I did post this in another thread, but thought that it's deserving of one of its own. In accordance with the information on the peyronie's uk blog --> Xiaflex Trails (http://www.peyronies-disease.co.uk/2011/01/xiaflex-trials-uk.html) are taking place in the UK in February. I emailed today to double check that places are still available, and I didn't get a 'no' so hopefully they still are. Froma personal perspective, I'm not going to go for this treatment, because I'm getting on well with other treatments available here, and I have a thing about injections. I know interest has been expressed in Xiafles though, so I'm sure it's appealing to some.
Actually, I may as well post it here...
QuoteTo whom it may concern,
A patient of ours has suggested emailing you some information regarding a new clinical trial for Peyronies disease.
This is a European Trial using Collagenase which will be due to start in Febuary once screening has taken place.
The main inclusion criterias include:
Men with Peyronie's Disease of at least 12 months and with a curvature between 30-90 degrees.
There are a number of other criterias that are stipulated for the trial but these will be discussed with the patients in more detail should they be interested in applying for the trial. The trial is "time intensive" with a number of visits to the clinic set over a 9 month period.
We would be grateful if you know any patients or of any followers of your forums that may be interested in participating in this trial. The patients may ring our office in Harley street on 0207 486 3805 or email myself, at mandi@andrology.co.uk for further information.
Many thanks
Yours sincerely
Mandi Kayes
Lead Clinical Nurse Practitioner to Mr David J Ralph
I did read somewhere that in the UK the Xiaflex trial would be an Open Label study ie the participant will know what drug is being administered, not sure if that means there will ne no placebo.
Quote from: UK on January 31, 2011, 03:59:14 PM
I did read somewhere that in the UK the Xiaflex trial would be an Open Label study ie the participant will know what drug is being administered, not sure if that means there will ne no placebo.
I didn't know that! Hopefully it's true. If so, that's reassuring for those taking part.
Quote from: newguy on January 31, 2011, 10:11:26 PM
Quote from: UK on January 31, 2011, 03:59:14 PM
I did read somewhere that in the UK the Xiaflex trial would be an Open Label study ie the participant will know what drug is being administered, not sure if that means there will ne no placebo.
I didn't know that! Hopefully it's true. If so, that's reassuring for those taking part.
I found what I was referring to - reading this indicates any trial outside the US will be Open Label studies
http://www.prnewswire.com/news-releases/auxilium-pharmaceuticals-inc-announces-initiation-of-xiaflex-phase-iii-studies-for-peyronies-disease-104692709.html
Our late stage global development plan for XIAFLEX will consist of four clinical studies and will be known by the acronym IMPRESS – The Investigation for Maximal Peyronie's Reduction Efficacy and Safety Studies. There will be two randomized, double-blind, placebo-controlled phase III studies, which are expected to enroll at least 600 patients at approximately 70 sites in the U.S. and Australia, with a 2:1 ratio of XIAFLEX to placebo. There also will be one open label study, which is expected to enroll at least 250 patients, at approximately 30 sites in the U.S., EU and New Zealand, and one pharmacokinetic study, which should enroll approximately 16 patients.
Oh oh! They are STILL going to be giving some participants PLACEBO. I guess they have to do it, but it is too bad some guys are going to miss out on ANY treatment for some time while this thing churns along. I guess the take home is that if you have something that is working now, think twice before enrolling in this trial. On the other hand, if NOTHING is working for you, this may be your opportunity. BUT, REMEMBER, ALL other treatments stop when you enroll in one of these trials! - George
Actually George I think you're incorrect -
http://clinicaltrials.gov/ct2/results?cond=%22Peyronie%27s+Disease%22
A placebo is not necessary in an open label trial - there's a number of different trials going on here and they're not all structured the same.
I've emailed them directly about this issue. Hopefully they'll get back to me soon :).
Mandi emailed through to confirm that everyone will receive the actual drug, so that's great news. There are no placebo drugs in this trial. I'll post a note on the blog too later, so that people know that they will be receiving Xiaflex. Other info,: those taking part will potenitally be receiving 8 injections (2 injections per cycle - 6 weeks apart).
Newguy, You are, of course, referring to the UK trials when you say "no placebo", correct? Because the quoted PR release seems to indicate that US and Aussie trials WILL include placebo. - George
Quote from: George999 on February 01, 2011, 07:29:20 PM
Newguy, You are, of course, referring to the UK trials when you say "no placebo", correct? Because the quoted PR release seems to indicate that US and Aussie trials WILL include placebo. - George
Oops, yes. My comment is specific to the UK study.
Thanks for posting this Newguy. I rang Mandi Kayes today and am now on the waiting list. Hopefully I'll be chosen for the trial. I think I satisfy all the requirements.
Will keep you posted.
Newguy
This is exciting news a study using the medicine on all patients.Wow wonder if this is something that might expedite its use if it works wonders.Again we have to be patient remember men have been suffering this sense the 1700' s.
Lets hope that our train comes soon especially for the young and those suffering for along time.
Fubar
Quote from: shrout on February 10, 2011, 03:33:45 PM
Thanks for posting this Newguy. I rang Mandi Kayes today and am now on the waiting list. Hopefully I'll be chosen for the trial. I think I satisfy all the requirements.
Will keep you posted.
I have my fingers crossed for you!!
Quote from: fubar on February 10, 2011, 09:29:46 PM
Lets hope that our train comes soon especially for the young and those suffering for along time.
Fubar
Yes, this is an exciting opportunity for people. The best part being that those accepted to the study, know that they are getting the real thing, and won't have to pay for the treatment. Hopefully some of them will report back here with their thoughts, just as those in the US studies have done.
Any updates from UK men in the xiaflex trials?
The Trials have not yet begun ...
They have now, just had my first injection today. Stung a bit and it's a bit sore now. 2nd injection tomorrow then back again on Monday. Anyone else on the trial?
So the trials have started. Great news! I will speak to my uro in 10 weeks and ask him how it is going as he is carrying them out at UCHL. That is a lot of injections!!!? How come you are having so many in such a short period. Don't they allow weeks in the USA between shots?
Hi,
Another UK trialist signing on...
Wow, I've been waiting for this day for about 8 years which was back when Biospecifics were developing this drug - monitoring its progression somewhat religiously and so I can hardly believe the day has finally come. Being only 37 it's been a rough period of time and my hopes are somewhat high.
Anyway, had the first injection today and as Gareth said, the injection did rather sting. The needle went deeper than what I thought it would, before Amr started to pull it out whilst injecting the solution.
I'm now rather swollen and like previous posters have mentioned, the penis has doubled in girth and starting to turn a mixture of red and dark blue. It is extremely tender although walking is totally fine. I'm not sure how Amr will find the plaque for the second injection tomorrow though with it being this swollen. However, I am sure tomorrow's injection will be much more painful with the penis being so tender now and the swelling and bruising will get a lot more intense. I'm slightly worried I'll be walking like John Wayne after tomorrow.
Incidentally, Cycle 2 sounds like it will be slightly harder too which requires an induced erection to measure any improvement before the 3rd collagenase injection (into the flacid penis still) can me administered. I really find those alprostadil injections painful, not especially the injection itself but the medicine stings for the penis for the rest of the day.
Anyway, I'm really pleased to be on the trail and am hoping that this treatment will end the living nightmare that so many face with this spiteful disorder.
Best of luck to you all.
WFX
Great news you got on the trail. I'm praying for good results for everyone and also myself. I was told that I had just missed out on the trial but if it were a success I would likely get it. So how many injections will you have in total?
Quote from: Worried Guy on April 08, 2011, 07:17:02 PM
So the trials have started. Great news! I will speak to my uro in 10 weeks and ask him how it is going as he is carrying them out at UCHL. That is a lot of injections!!!? How come you are having so many in such a short period. Don't they allow weeks in the USA between shots?
Gareth means that Monday is modelling day. Injections are only done on the Friday and following Saturday visits. Treatment cycle 2 (Friday injection, Saturday injection, Monday modelling) starts in 6 weeks time on the 20th May. Cycle 3 starts 6 weeks after that, and the final forth cycle, 6 weeks after the third. This is rounded off by 2 follow up visits some weeks after the final cycle.
A total of 15 visits may be required I think (including the screening visit), but if your curvature drops below 15 degrees the treatment stops but you still have to attend the clinic for one visit each cycle for a check up.
There could be a maximum of 8 collagenase injections over 4 treatment cycles. I hope this explains everything clearly.
This helps. Please keep us posted on your progression and I wish you all the best.
Quote from: Worried Guy on April 08, 2011, 08:01:04 PM
This helps. Please keep us posted on your progression and I wish you all the best.
Thanks. I'll keep posting updates. In the meantime I can recommend getting a penis extender / stretcher if you haven't already got one. This along with the PAV cocktail (pentoxifylline, arginine, viagra (or cialis) seemed to work the best for me up until this opportunity, as suggested by Prof Levine when he was holding a clinic at Mr.Ralphs in Harley St in November 2010. It sounds like you are seeing Mr Ralph at UCLH as opposed to Harley St which is good. I've been having to pay for my prescriptions privately.
Quote from: waitingforxiaflex on April 08, 2011, 07:41:47 PM
Hi,
Another UK trialist signing on...
Wow, I've been waiting for this day for about 8 years which was back when Biospecifics were developing this drug - monitoring its progression somewhat religiously and so I can hardly believe the day has finally come. Being only 37 it's been a rough period of time and my hopes are somewhat high.
Anyway, had the first injection today and as Gareth said, the injection did rather sting. The needle went deeper than what I thought it would, before Amr started to pull it out whilst injecting the solution.
I'm now rather swollen and like previous posters have mentioned, the penis has doubled in girth and starting to turn a mixture of red and dark blue. It is extremely tender although walking is totally fine. I'm not sure how Amr will find the plaque for the second injection tomorrow though with it being this swollen. However, I am sure tomorrow's injection will be much more painful with the penis being so tender now and the swelling and bruising will get a lot more intense. I'm slightly worried I'll be walking like John Wayne after tomorrow.
Incidentally, Cycle 2 sounds like it will be slightly harder too which requires an induced erection to measure any improvement before the 3rd collagenase injection (into the flacid penis still) can me administered. I really find those alprostadil injections painful, not especially the injection itself but the medicine stings for the penis for the rest of the day.
Anyway, I'm really pleased to be on the trail and am hoping that this treatment will end the living nightmare that so many face with this spiteful disorder.
Best of luck to you all.
WFX
Interesting that you got swelling and a mix of red and dark blue from the first injection, I just had a little red welt and a bit of pain overnight. However after the 2nd injection today I'm very swollen and the skin is badly discoloured angry red, black and purple. Just hoping it all calms down before Monday!!
Well, yesterday was the day for the second injection.
When I woke up yesterday morning (Saturday) the swelling had gone down by about 50% which was a relief, but the penis was still rather tender and bruising had increased to over the whole of the penis.
At the clinic before the second injection took place, Amr said that to him the plaque was harder to detect but thought that this was more due to the medication working as opposed to the swelling. He also said that his impressions were that it was not imperative to hit the plaque directly with the injection as the medication diffuses over the whole penis, as evidenced by the swelling of the whole penis. The staff commented that everybody apart from one person (Gareth I guess!) had significant swelling but the bruising varied quite widely. Apparently, one chap had bruising all around the groin area as well as the penis.
Anyway, the second injection itself didn't hurt anywhere near as much as the first, with only very mild pain like with a blood test. It didn't seem anywhere as deep. I'm not sure whether Amr had adjusted his technique or whether it was due to me knowing what to expect. About 10 minutes after the second injection, the penis started to sting (similar to the pain I feel with alprostadil injections) which lasted for about an hour. This didn't happen after the first xiaflex injection.
Over the next 8 hrs the penis began to swell more and more and became very painful to look a bit like a big blue sausage roll. The swelling was much worse than after the first injection. If I would rank the pain after the first injection as 4, this was 6 or 7 and was a bit of an ordeal to be honest. I had to take some of my back pain medication like diclofenac and co-codamol which helped. Walking was now a bit of a problem and so I decided to stay in last night. Lying in bed wasn't so painful for the penis, but walking around put pressure on where the penis attaches to the body (the penis was quite handful and heavy) which itself was quite bruised and tender now.
This morning (Sunday) the swelling has gone down by 50-60% and I'm not needing any pain medication but there is some tenderness in the pubic area now and a small bit of bruising too. I could probably manage to wander into town later if I wanted to, although the penis is still very tender and bruised.
I expect the swelling to go down tomorrow to for third visit for modelling tomorrow evening.
It's hard to tell whether things are improving (curvature wise) at the moment as the penis is still quite deformed from the swelling and looking for the plaque is rather painful.
That's it for now.
wfx
Been reading this with great interest,
thank you guys for going through this (for us others)
One question, you are all talking about "modelling day" after second injection..
For an outsider, what is "modelling" in such a study?
Luc
Hi Luciano,
As far as I am aware on Monday evening, the investigator running the trial will gently bend the penis in such a way to try to stretch the (hopefully now) thinned down and weakened plaque. I'm expecting to hurt a bit. We then have to repeat the modelling (or stretching) at home, every day until the next cycle. In Auxillium's PhaseIIb trials it was found that patients who were asked to model their plaque got slightly better results from those who did not. Using traction devices like the fastsize / jess extender etc (which a few of us may have been using regularly before this trial) would be too harsh at this stage and so gentle manual stretching is required.
I will post my experiences on Tuesday.
Regards,
wfx
Thanks for the explanation. Looking forward in reading your reports.
So yesterday was the day for the "modelling" which is described as a gentle bending of the penis to stretch the plaque area...
I woke up on Monday morning and the swelling had subsided another 50% (the improvements seem only to happen overnight) which was good I thought as it would be easier to find any plaque that was remaining. The penis was still bruised and pretty painful although that too was slowly easing.
However, I found the modelling itself done by the study doctor to be *extremely* painful. Seriously, I'd rate it an 8/9 out of 10. I was surprised at how much force seemed to be used and was swearing quite loudly. The study doctor said he was trying to break up the plaque - I didn't think we would be using the Dupuytren's protocol here! The protocol said gently stretching I thought. As an aside, it made me think that the success of Xiaflex will have significant dependence on the skill/experience of the urologist and his interpretation of instructions / choice of force and where it's applied. As Peyronies Disease sufferers we all know how fragile our best friend is and that more force may not mean a better result.
This morning the swelling had gone down a bit more but the penis was very sore today, especially where the study doctor had been stretching which i'm not sure was the site of my plaque?!? I managed to get an erection this morning and to be honest, the curve looked worse, with no improvement at the site of the old plaque (near the tip) and a new curve point slightly lower down the shaft where I think the study doctor was stretching. What I thought was my plaque and a distinguishable cord that used to run down the shaft can no longer be found. Instead there seem so be new bumps and indentations and worryingly, also what seems like a new lesion/tear where the study doctor was stretching.
I'm really hoping that I'm just being overly worried or this is just due to swelling and that things settle down and improve over the next 6 weeks. I would be totally devastated if this treatment made things worse as I only had a 30 degree bend in the first place.
Garreth, what did you make of the modelling? Are you seeing any improvement?
So, my thoughts directly after the first cycle are this:
That Xiaflex treatment with modelling is not to be taken lightly and some people will find it very painful. It is a powerful drug but the urologist's choices he makes with the treatment will probably impact your outcome too.
The modelling that we have to do at home is nothing like what the study doctor did. You have to stretch the flaccid penis as far as it will go for 30 seconds, 3 times a day so it's pretty much just mild hand traction and shouldn't cause much pain.
Hi folks,
Well everything did calm down by Monday evening, and then I went for the modelling. Definitely an 8-9/10 but more for skin pain with me, at one stage I thought he was giving me a chinese burn! My plaque is near to the base of my shaft, part buried by a little fat and I suppose it's not easy to stretch a limp penis!! Anyway, walked away really with sore skin which has carried on though today. However when I woke during the night I was shocked, everything definitely seemed straighter and pain free which I wasn't expecting!! I've not done my stretching tonight, been out pretty much all day and with the skin still very sore I thought I would start tomorrow. Funnily the injection sites were a bit tender and itchy today, hopefully they will calm down by the morning.
I think I've been luckier than some, my 1st injection whilst hurting didn't cause swelling and whilst my 2nd injection wasn't pleasant and the stretching hurt, all in all I've got to give Xiaflex a fair go. We've got 4 treatment cycles and I think that the idea is to break the plaque and then to break the bits of the plaque. So simplistically cycle one splits it into 3 lumps, cycle 2 then targets the biggest remaining 2 lumps and so on and so forth in much the same was as they blast tumours apart. So hopefully if we all stick at it, the drug will obtain it's licence and we'll see further refinement in treatment methods. For those of you who saw the early trials I seem to recall they were doing multiple injections into the plaque which I can only imagine how much that must have hurt!!
Good luck to everyone for cycle two, only 5 weeks and 3 days to go!!
After yesterdays panic, cautiously more optimistic this morning.
Swelling has gone down a bit more and so has the bruising quite a lot (had a bath last night which definitely helped). A semi-erection this morning actually looked pretty promising, appeared slightly straighter than when I started the trial - the curve softer.
Yesterdays erection which looked more curved could have been due to the swelling distorting it. The skin of the penis is still reasonably painful and there is a swollen lump under the skin which could have been the injection site. The swelling could have also produced a contour which felt like it could be a crevice/tear which I mentioned and was worried about in my previous post. This is still present but less pronounced.
So... fingers crossed.
I pm'ed a few people on the trial in other countries who were receiving the real drug and neither of their study doctors were so zealous with the modelling, actively trying to avoid pain in fact, but the they were still getting pleasing results for the cycle.
I think I may pass on the modelling next time :o
The Xiaflex trial seems to concentrate on the obvious problem of peyronie's which is curvature! Has anything been said about an improvement of girth and length. These tend to come hand in hand with plaque. Are they measuring girth and length on you guys?
Hi wfx,
A bath definitely helped me, definitely sore around the injection site, but a little less so today.
worriedguy:
They are monitoring length but not girth (or I don't remember any girth checks). I suppose curvature and length are more important than girth.
Just doing my stretches!!
Wow thanks for the description guys. I am also in the study in the USA but had zero reaction to ALL the shots so far, so I am probably getting the placebo.
Do you know why there is no placebo condition in the UK? I just find that interesting... common sense would tell you there should be no placebo condition here either, but the USA FDA (food and drug administration) doesn't operate by common sense when approving a drug. Looks like your healthcare system does.
I won't get the real drug until the summer of 2012 so i am gonna be really curious what happens to you... in particular, with size issues bc that has been a problem in addition to the curve. Please keep us posted on that front.
Isn't the doctor just injecting it directly in the plaque? How could it spread beyond there? There is only 0.58 mg... I would be more inclined to think you are just getting a reaction in the whole penis bc the body is creating a major immune / inflammatory response to this substance (which is a foreign protein) that is calling blood cells to the whole area. You know? Bee stings can make a whole hand swell up even though the venom isn't in the whole hand. The body responds more in some cases than others. I also wonder, if you took benadryl (diphenhydramine / anti-histamine) if that would lower the inflammation...if it is related to a response to the protein.
I wouldn't expect any changes in the curve for a few weeks - until things settle down...and it might improve over months after that as it heals and the elastin is restored. But whatever happens, THANK YOU for posting on here. This is the first info I read from a xiaflex patient that is 100% confirmed to be a xiaflex patient...not someone who might be in the placebo group.
Good news today!
Measured my curve and it has gone from 30 degrees to 20 degrees. I took photos before the first injection and compared them to a photo from this mornings erection. Got them up on the computer screen and measured with a protractor. There is an obvious difference between the two photos - the curve is softer and less pronounced.
I had another bath last night which again helped with the bruising this morning. Only pain today is still at the injection site which is still swollen. I can still feel a small bit of plaque but it's much smaller than before.
Hopefully with the manual stretching I could eek out a few more degrees before the next cycle. I won't post anymore updates until just before the next cycle on the 20th May unless something of particular note happens.
Hi Mike, in clinical trials the group that gets the active drug is always bigger than then placebo arm. It sounds like Auxillium are using the UK and a number of other European countries to boost the numbers in the active drug arm. I think Auxillium can use US placebo data to file in Europe with the EMEA.
Size is looking good and the penis feels fleshy which is also good. The doctor is aiming for the plaque. In my case I think he missed the main bit by a few mm, but my plaque was difficult to locate because it was still soft. I hope is now that elastin is restored and that the injection site doesn't become another bend in th future.
Finally, sorry to hear that you think you are in the placebo group. I have had Peyronies for over 8 years (since I was 28/29) and so I know the pain. Hopefully there is a light at the end of the tunnel for you with the Summer 2012 date.
I was hoping to get on the trial, but it's clear from the posts this past week that they've started, and I haven't.. so disappointed, obviously, but pleased for those who are lucky enough to be participating, and that the results look so promising.
Could I ask those who are taking part, how many of you are there on the trial, and whether you have anything in common? Are you all patients of Mr.Ralph, for example? Or do you have a similar curvature, or age, perhaps? I'd be interested to know.
I had three consultations at UCLH last year, but was seen by Mr. Nim Christopher, who didn't seem particularly clued up on Xiaflex, or any impending trials. I'm wondering if this had any bearing on who was chosen.
Anyways, thanks for the detailed posts guys, and best of luck for the remainder of the trial.
Hi Shrout,
There are 10 people on the trial and the first cycle has just been completed.
The next injections in our treatment cycle start on the 20th May. I was told by the trial co-ordinator (Mandy Kayes) that they hope to recruit another 10 patients or so later in the year to repeat another trial (open label, active drug).
Here are the details of the trial with exclusion and inclusion criteria: http://clinicaltrials.gov/ct2/show/NCT01243411
You may want to make sure you meet these criteria before you get your hopes up.
If you think you meet these criteria then I suggest you contact the study center to express your interest:
St. Peter's Andrology Centre
London, United Kingdom, W1G 6BJ
Contact: Mandy Kayes 44 (0) 207 486 3805 mandy@andrology.co.uk
Principal Investigator: David Ralph
I have been a private patient of Mr.Ralph's since around 2004 and Mandy called me in March to see whether I would be interested (although on each occasion I visited Mr.Ralph through the years I have asked about injectable collagenase and expressed interest in any trials). I'm not sure about the other participants, whether they were private patients of Mr.Ralph or their ages, deformities etc but I know that we all meet the inclusion criteria.
Good luck!
BTW: Xiaflex (as Xiapex) has just been launched in the UK for Dupuytrens, the first country in the EU.
Quote from: waitingforxiaflex on April 14, 2011, 06:19:39 AM
Good news today!
Measured my curve and it has gone from 30 degrees to 20 degrees.
That's impressive with 1 round of shots... congrats.
Did you have any narrowing over all these years? (if so - any change?) How stable was your situation? I feel like I'm getting worse but hard to say.
Quote from: shrout on April 14, 2011, 09:29:07 AM
I was hoping to get on the trial, but it's clear from the posts this past week that they've started, and I haven't.. so disappointed, obviously, but pleased for those who are lucky enough to be participating, and that the results look so promising.
I echo the opinion of others that you should continue to express your interest. A recent email regarding the study is up at the peyronie's disease blog and suggests that they may recruit further subjects in the future:
QuoteWe are up to our full quota of recruits for the study now and I would like to say a big thank you to you and your website as we had an excellent response from potential people. Unfortunately, due to the strict exclusion criteria and the amount of subjects we can recruit there were a few people we haven't been able to include.
We may at a later stage be allowed to recruit more subjects, depending on how the other Uk sites have managed. I will let you know if this should happen!
Best wishes and again many thanks for your help with putting the word out there!
- Peyronie's Disease (http://www.peyronies-disease.co.uk/) Blog
It's great news that there appears to be some positive results already from those in the trial. It offers yet another avenue of improvement for peyronie's sufferers.
wfx, very useful information. Many thanks...
I hadn't realised the numbers were so restricted. There are bound to be a lot of disappointed guys like me out there.
I don't actually meet criterion no.2 (stable relationship with partner/spouse for 3 months prior to the trial etc.). That's not something which can easily be manufactured. ( I would of course be willing to attempt vaginal intercourse before, during and after the trial, should a suitable lady be provided :-). But I don't suppose that's part of the deal. )
Newguy, thanks again for the encouragement. I will continue to register my interest with Mandy Kayes despite the drawback. And as you say, great news. The drug is finally here and it appears to be working. Fingers crossed for the next phase of the trial, and hopefully we'll see xiaflex widely available (and affordable!) as a treatment for Peyronies in the not too distant future.
Hi Guys
This is a first time post for me on here. I'm a |UK resident.
Thanks for all the info......
I've recently been diagnosed with Peyronies Disease. I've had pain for a while now and noticed my curvature (to the left) about two months ago. I've seen a local urologist (well actually I didn't get to see the local specialist in Peyronies Disease, although my appointment was with him, I saw one of his colleagues who was very matter of fact) since then I've found this forum. After this post I'm writing to my local specialist, he ain't getting away that easy :) and in fairness he has rang me since I rang to question why I didn't see him but I missed the call.
Anyway thats my rant out the way. I've an appointment with Mr Ralph in just over two weeks time as a new patient so it will be interesting to see what he has to say re this. His secratary did indicate that a trial was happening so it is interesting to actually read posts from trial volunteers.
I will share any info that I recieve.
I was about to stock up on Pentox but might hold fire until I've seen him. Does anyone know if Mr Ralph prescibes Pentox?
Any contacts from the UK would be most appreciated.
Thanks
Tunnelman
Quote from: tunnelman on April 15, 2011, 06:21:24 AM
Hi Guys
This is a first time post for me on here. I'm a |UK resident.
Thanks for all the info......
I've recently been diagnosed with Peyronies Disease. I've had pain for a while now and noticed my curvature (to the left) about two months ago. I've seen a local urologist (well actually I didn't get to see the local specialist in Peyronies Disease, although my appointment was with him, I saw one of his colleagues who was very matter of fact) since then I've found this forum. After this post I'm writing to my local specialist, he ain't getting away that easy :) and in fairness he has rang me since I rang to question why I didn't see him but I missed the call.
Anyway thats my rant out the way. I've an appointment with Mr Ralph in just over two weeks time as a new patient so it will be interesting to see what he has to say re this. His secratary did indicate that a trial was happening so it is interesting to actually read posts from trial volunteers.
I will share any info that I recieve.
I was about to stock up on Pentox but might hold fire until I've seen him. Does anyone know if Mr Ralph prescibes Pentox?
Any contacts from the UK would be most appreciated.
Thanks
Tunnelman
Ralph prescribed me Pentox on a private appointment. I asked for it, he obliged. Did not use it himself but was aware if was being used in San Francisco - that was about it.
Hi Tunnelman,
Think about supplementing the pentox with arginine and viagra/cialis - the PAV cocktail if you can.
Arginine can be obtained from Holland and Barrett and cialis/viagra either online or from pharmacies.
All 3 of these components increase blood flow to the penis and inhibit fibrosis and the literature suggests they have the biggest impact in the acute stage, so go for it!
This is what the main US Peyronie's urologists (Levine etc) prescribe.
BTW, you will probably have to order pentox in advance from the pharmacy so that they can order it in. No pharmacies I know stock it outright.
It's trade name is TRENTAL and comes in 400mg extended release tablets and costs around £23.50 on a private pescription for a months dose.
The current trials center around the use of Xiaflex for chronic, stable Peyronies. By the time it is on the UK market assuming EMEA success (about 2-3 years) you should be stable but you may not need it after all if you are lucky with the oral meds.
Quote from: waitingforxiaflex on April 15, 2011, 01:26:56 PM
Hi Tunnelman,
Think about supplementing the pentox with arginine and viagra/cialis - the PAV cocktail if you can.
Arginine can be obtained from Holland and Barrett and cialis/viagra either online or from pharmacies.
All 3 of these components increase blood flow to the penis and inhibit fibrosis and the literature suggests they have the biggest impact in the acute stage, so go for it!
I wouldn't want to take Arginine with Cialis. Arginine is a Precursor for the synthesis of nitric oxide (NO), which Cialis warnings clearly state don't take Nitric oxides. This is a bad, possible lethal, combination. I've stopped taking my ALC for this very reason, since I'm on a low-dose cialis now.
Crash
Great observation, now you might be saving lives.Me being a heart patient learned that early have not taken my nitro sense onset of this disease or the other.
Fubar: this can bee a risky business!
Sorry if i'm getting off topic, but i am starting to get worried:
Quote from: crashbandit on April 15, 2011, 11:22:17 PM
I wouldn't want to take Arginine with Cialis. Arginine is a Precursor for the synthesis of nitric oxide (NO), which Cialis warnings clearly state don't take Nitric oxides. This is a bad, possible lethal, combination. I've stopped taking my ALC for this very reason, since I'm on a low-dose cialis now.
Hmmmm .. I have been just taking L-arginine and Cialis for a week now... (cialis for a month)
I will stop the Arginine as long as I am taking cialis
May I just ask a stupid question:
Cialis is an PDE-5 Inhibitor just like Viagra.
In the PAV coctail promoted by Levine we have Pentox - Arginine and Viagra
Does it apply to Viagra also?
Somewhere I read they tested with cialis because it was easier to administrate and remained longer in the body (so it was actually a pricing question)
Without wanting to hijack this thread..
Another question: Are we talking about Arginine (You said
you stopped taking ALC - in my mind that was Acetyl-L-Carnintine)
Does it apply to ALC also or only to L-Arginine?
Luc *confused and worried*
--------
Taking actually:
3x 400mg pentox (since 3 months)
2x 1000mg ALC (since 1 week)
2x 1000mg L-arginine (since 1 week)
3x 100mg ubiquinol (since 3 months)
3x 3 neprinol (since 1 month)
1x 5 mg cialis (since 1 month)
Quote from: crashbandit on April 15, 2011, 11:22:17 PM
Quote from: waitingforxiaflex on April 15, 2011, 01:26:56 PM
Hi Tunnelman,
Think about supplementing the pentox with arginine and viagra/cialis - the PAV cocktail if you can.
Arginine can be obtained from Holland and Barrett and cialis/viagra either online or from pharmacies.
All 3 of these components increase blood flow to the penis and inhibit fibrosis and the literature suggests they have the biggest impact in the acute stage, so go for it!
I wouldn't want to take Arginine with Cialis. Arginine is a Precursor for the synthesis of nitric oxide (NO), which Cialis warnings clearly state don't take Nitric oxides. This is a bad, possible lethal, combination. I've stopped taking my ALC for this very reason, since I'm on a low-dose cialis now.
Crash,
That's exactly what I said to Levine when he prescribed it to me but he said it wouldn't be a problem and I don't find it to be.
However you raise a good point that people should consider their medical backgrounds and history before they take internet advice, and should really talk to a doctor.
Thankyou :)
PS: Luciano - Levine said I could take Cialis instead of Viagra if I wanted to (which I do for the reasons of it being longer lasting)
Sorry, my mistake about the ALC. I got it mixed up with GPLC (Glycine Propionyl-L-Caritine), which is a definite NO increaser. I did alittle research on ALC and I can't see it being listed as increasing NO production.
I'm not sure about Viagra and Nitric Oxide supplements.
Thanks for the info gents. I've started on everything bar the Pentox and Cialis. I will see Ralph in a two weeks time and alos order over the net. Any heads up on best suppliers to the UK?
Thanks
http://www.oncologytube.com/index.php?page=videos§ion=view&vid_id=100494
Now I know a few of you have seen this video before but it highlights a few of my concerns with Xiaflex which have not been addressed. He talks about what happens when the scar is dissolved.
It seems like they are not measuring girth on the study but it sounds like they should be. Nobody wants a thinner penis than when they started especially when some of us have a thinner penis due to peyronie's anyway.
That's a great video WorriedGuy. It touches on the exact concern I mentioned to you in a message a couple of days back. Dr Lue says in the video that's it's a minor concern, so hopefully that will prove to be the case. It could mean that men will be somewhat limited in terms of how many courses of this treatment will be allowed.
Thought this thread was about the UK Xiaflex trial, not an opportunity for Worriedguy and newguy to have a pop at Xiaflex!
I'm not being funny guys, we've read the risks, we've surfed the net and we don't need you guy's throwing concerns around it's not the time for if's but's and maybe's!
I'm giving Xiaflex a go, if it works brilliant, straight up and a happy wife. If it doesn't I've lost nothing cause it doesn't work now! If it does and it works for a good percentage of people on the trial it may, and I stress just may, make thousands and thousands of peoples lives better.
I don't care if my penis ends up a bit thinner, if it's straight enough to go in thats all that I care about.
He just said the tunica could be thinned out - and he means that it would happen acutely, by the process of injecting too much into a spot that doesn't have much scar - so the collagenase might dissolve some of the collagen in the tunica. That (in a severe case) would result in penile fracture, as he stated. It has not happened in any of the trials, though it is a warning we've all been told. Similarly, a small number of people had tendon ruptures in their hands after xiaflex in clinical trials.
The actual penile girth itself would hopefully expand if xiaflex was able to dissolve and release the tension of the scar... well, that's my hope anyway. They are not measuring girth for some reason...which is unusual to me. Even if it is unchanged, this is important to know, i'd think.
Quote from: smithgareth on April 18, 2011, 05:21:28 PM
Thought this thread was about the UK Xiaflex trial, not an opportunity for Worriedguy and newguy to have a pop at Xiaflex!
I was simply commenting on Dr Lues words in the video. By no means am I stating that I think Xiaflex is a bad idea. If I thought that I wouldn't have created this very thread :). WorriedGuy isn't anti either. I think he tried to get on the trial. I'll keep my future xiaflex comments (even replies) out of this particulalr thread unless they are specific to the UK trials.
smithgareth,
Hey there, I'm not knocking Xiaflex at all and the reason I posted it on here was because I had asked if they were measuring girth during the UK trail. A thinner penis could create a hinge so yes it could be a problem. I'm sorry if this video was ill considered and I have highlighted a concern that was perhaps something you did not want to hear about at the moment. I understand that you may have your own concerns already. The fact is that Dr Lue wrote the book on peyronie's so I'm interested in listening to the guy. I was told that if I had visited my Uro a few weeks before I may have gone on the trial and that if this trial is a success there is a good chance I will be getting it after it is cleared. I probably will risk Xiaflex but will be sure to take girth measurements myself. Also, because I'm not on the trial I've not been warned first hand about the dangers and this was the first I'd heard of it. He did say that these were minor issues but this is why it is a trial as you know. I really do wish all the best for the guys on the trial. So far people seem to be having positive results so lets hope they continue. I'm honestly sorry if I annoyed you.
Mikesmith,
I did consider that also. If you can get rid of the scar it will allow the area to expand. In the lab it seems like it only dissolves the scar and leaves elastin. I read that from one of the posts on here.
I don't necessarily think Lue is totally correct about what he says about the elasticity, or maybe I misunderstood him. How could one improve in length at all if no change in elasticity takes place? Just from angle improvement?
Quote from: BSSS on April 21, 2011, 04:40:45 PM
I don't necessarily think Lue is totally correct about what he says about the elasticity, or maybe I misunderstood him. How could one improve in length at all if no change in elasticity takes place? Just from angle improvement?
If I understand him correctly he says:
The problem is the loss of elasticity. So once the scar tissue is softened, you need some stretching, either physically (i think he meens modelling) or with a device (probably tranction or ved ? no idea)
Luc
Not looking forward to Friday, not sure there is any noticeable improvement, and not looking forward to a weekend of pain!!
Good luck!
Hi All,
Like Gareth said, cycle 2 of the St. Peter's Andrology Centre Collagenase trial starts on Friday 20th May 2011.
By my measurements, I have gone from a 30 degree deviation to roughly an 18 degree deviation after one cycle.
I will post the official improvement once known.
The "12 degree" improvement was noticed about 2 weeks after the first cycle once all the swelling had gone down and the daily home modelling sessions appear to have made no difference on the deviation (although I guess they could have kept the improvement intact).
I do have new lumps in the tunica which are of some concern. I'm not sure whether these were due to the collagenase or due to the modelling session by the investigator which was very very painful.
I'm not sure whether these lumps will turn into something more sinister at a later date of whether the second cycle will smooth things out. I will report on this at a later date.
12 Degrees from one cycle seem to be one of the better results posted from these trials. Although I have had the disease for 8/9 years the plaque, although fibrous and feeling like a cord, has always been softish with no signs of calcification. Erections have also been better since cycle 1, with the head fully engorged.
So, after cycle one I am quite impressed with the results. Also, as I am still above 15 degrees deviation I qualify for another cycle which will hopefully bring me down to somewhere close to 5 degrees at which point I would be happy. It would have been gutting to be at 14/15 degrees deviation now and therefore not qualify for the next cycle.
It will be interesting to see whether the next cycle has a bigger/smaller/same impact as the first. On paper you could argue any of these possibilities.
So ahead lies a long weekend of severe pain, having a pumped up, extremely sore aubergine between my legs and 3 trips to London.
I think I had better get some good films in.
WFX
Thanks WFX you've made me feel better! Glad you've had a noticable improvement, hopefully the truth is better than my perception and I will post my results on Friday. I've also noticed better erections, feels that they are stronger and almost stretching the skin. Unfortunately I'm working over the weekend so no films for me, think I'm going to spend most of it sat at my desk, will probably have to claim a sore leg to save too many questions!!
WFX/Gareth
I did read that they were also measuring flaccid length in the trial. If in fact you had a reduction in the first place and they did measure are you able to share those results?
My biggest issue is flaccid curvature which is a 3 times daily reminder of the disease, so is of interest to me what effect Xiaflex treatment might have in respect of that
thanks
Quote from: UK on May 18, 2011, 11:32:41 AM
WFX/Gareth
I did read that they were also measuring flaccid length in the trial. If in fact you had a reduction in the first place and they did measure are you able to share those results?
My biggest issue is flaccid curvature which is a 3 times daily reminder of the disease, so is of interest to me what effect Xiaflex treatment might have in respect of that
thanks
UK,
I have lost length as a result of the disease (I went from 7 3/4 inches to around 6) but has been largely mitigated by the use of a penis extender as I am back up to around 7 inches - I used an X4 labs one but Fastsize are probably just as good which I used for quite a few months in 2010. Anyway, stretched length before treatment was recorded as 14.5 cm by the investigator.
I will let you know if they measure and what the result was sometime in the next few days.
WFX
OK, so quite a lot to report.
I'll get myself out of the way first...
Reduction in deformity was confirmed from 30 degrees to 18, a 40% reduction after one cycle :)
Stretched length was again measured and read 14.5cm - no change here.
At 18 degrees deformity I was coming close to not being eligible for the second cycle. The investigator checked and I just qualified.
The first injection of this cycle was probably the least painful of all so far (yesterday). However the second injection (today) was by far the most painful. This was partly due to the plaque being hard to find by the investigator requiring much manipulation (having an already very sore penis) and partly due to the needle feeling like it went deeper than usual into the penis. Swelling, bruising and pain post-injections this time round has not been quite as bad as the first time. It will be interesting to see if this translates to less curvature reduction.
Modelling is on Monday. My favourite. :-\
Anyway, during this cycle I had more of a chance to meet the other trialists (as we waited to have blood samples, blood pressure and heart rate taken) and so we were all able to compare notes and talk about our experiences of the condition in a very amusing, enjoyable and frank matter. We all agreed this was the first time we had all done this as it's not the subject you bring up with your friends and found this to be an unexpected benefit of the trial. Highlights from our discussions... Improvements in curvature from cycle one varied quite widely. From the trialists I spoke to, 'The Champ' was a trialist with a 20-25 degree reduction from 75. We were all quite blown away by this. Another trialist had a 15 degree reduction, a few trialists had 5-10 degrees and a few had negligible improvements. Some trialists also mentioned that they had improvements in stretched length too. As for pain and swelling, some people had more swelling this time than last time, some less. Some found the second injection of this cycle more painful, some the first. It all seemed to vary with no pattern.
Finally, the centre has recruited another wave of 10 patients which is due to start in June. I did ask whether they had any free spaces but they said that they were fully booked.
I hope this helps.
WFX
Quote from: waitingforxiaflex on May 21, 2011, 07:49:47 PM
Anyway, during this cycle I had more of a chance to meet the other trialists (as we waited to have blood samples, blood pressure and heart rate taken) and so we were all able to compare notes and talk about our experiences of the condition in a very amusing, enjoyable and frank matter.
Heart Rate LOL - what they measuring there - who has the biggest fear of needles? :-)
Thanks for the report.
WFX,
Thanks for the update. Some pretty amazing improvements for some people. Speaking to the guys was the general feel that people were improving more than they anticipated? Did you ask about the new lumps which have formed and has anyone seen improvements in girth?
Cheers
Some great improvements guys. If these improvements stand the teest of time this is definitely an important weapon in the peyronie's arsenal.
Hi Folks,
sorry I didn't post on Friday unfortunately I haven't been well. I had an increase in stretched length of 0.5cm but no change in curvature. WFX was among a group who'd had noticable improvements and it just shows how hit and miss trials can be. My plaque is a little unususal I believe in that it's moved from when I first developed Peyronnies and now sits a few centimetres away from the curvature so on my second injection of cycle 2 Amr decided to leave the plaque and inject at two points on the curvature, running along the curvature rather than through the plaque. It'll be interesting to see the results from that.
Modelling was less painful this time but hopefully will produce better results.
Fingers crossed
OK so modelling was last night.
As previously mentioned - swelling, pain and bruising are significantly less this time round.
In fact, the investigator said that everyone showed less pain, bruising and swelling - possibly due to us all building up antibodies.
As there was no "angry aubergine" this time round, there was only very mild pain for the modelling procedure. The investigator used the same "force" as last time which in reality wasn't that much, it just seemed like it was last time as the penis was so sensitive. It's just really itchy today.
That's it for now.
Fingers crossed for more improvements!!
ACT FAST. Mandi at Andrology UK sent me this email (http://www.peyronies-disease.co.uk/2011/06/collagenase-xiaflex-trial-uk-update.html) earlier today, asking to get the word out. Basically they are looking for a few people to take part in the next Collagenese trial VERY SOON, with treatment starting on the 10th June for those who they fulfill the criteria. Very limited places. Express your interest at mandi@andrology.co.uk
Many thanks Newguy.
I have acted fast and registered my interest (again!), although, not currently being able to satisfy condition No.2, I'm not particularly optimistic about my chances. Keeping my fingers crossed nevertheless.
What is condition number 2?
I just checked. You will have to tell a lie Shrout/Or have sex with a friend.
WG
2. Be in a stable relationship with a female partner/spouse for at least 3 months before screening and be willing to have vaginal intercourse with that partner/spouse
http://clinicaltrials.gov/ct2/show/NCT01243411
EDIT: Dang, I already sent the email, in which I failed to lie (i.e.admitted the sad truth). Oh well...
Last heads up on this as I should think they've received a few responses. If you're in the UK and wish to take part in the Xiaflex trials next week, check a few posts down for mandis email address and contact her expressing your interest!
Quote from: shrout on June 02, 2011, 12:09:15 PM
WG
2. Be in a stable relationship with a female partner/spouse for at least 3 months before screening and be willing to have vaginal intercourse with that partner/spouse
http://clinicaltrials.gov/ct2/show/NCT01243411
EDIT: Dang, I already sent the email, in which I failed to lie (i.e.admitted the sad truth). Oh well...
Shrout,
How would anyone actually check to see if you are having relations with a female? :) (hint...they won't be able to)
BSSS
BSSS, you're right. Unfortunately I didn't realise this until too late and it looks like I've blown my chance. The more I think about this condition the more ridiculous (and unfair) it seems. So be it.
Still, it's not about me.. it's about the trial, and the outcomes, and a potentially powerful weapon in the war against this horrible disease, and, hopefully, an end to the suffering of thousands of men. I'll be following with great interest.
In the meantime, it's back to the VED :-\
Two weeks to go to round three ding ding! Looking forward to it as I think my curve is about 25% reduced so hopefully down to about 40 ish degrees! Fingers crossed!
How was the pain and swelling in round 2? Things seem to be going well for you. Have you managed to speak to the others?
That's awesome smithgareth I wish you luck for round three!
Sorry I've not posted earlier, busy few days. Measurement on Friday shows curvature down to 40 degrees!! Following the injection on Friday I had a popping/ cracking sensation during the night and when Amr did the modelling last night he said something had changed. He got a ruler and my stretched length is up nearly 2cm!!! Just need to see how things settle down now and see if the curve has changed too!
Strange. What do you think happened? Have you noticed a reduction in plaque size? Amr told me during my last appointment that the study was looking positive but it was too soon to tell at the moment. I look forward to reading it once it is published. He did say it would be a few years until it is available to the public. It concerns me with all the cuts at the moment that nice will he not pass if for the NHS.
My guess is the plaque split?? Does that sound plausible? Just want to see what the curvature is like now, but I'm not sure I'm ready to find out yet!!
Do you know how big your plaque is? Did they tell you?
When you can hear or feel the crack or snapping sound, it is the plaque breaking up. That is a good thing. If you think of the plaque as a cord, what is happening is that the cord is breaking. I don't think it happens to all and you can still have change even if you don't hear or feel something.
I do hope this trial will open up to people with hourglass deformity. I'd give anything right now to be on the trial, I know we all have varying degrees of the same problem but at 26 it's a nightmare. When you next visit Amr would it be wrong to ask for you to casually inquire how the treatment would work for people with hourglass deformity. Hope all is going well for you though
Hi,
An update from me on this UK trial...
The 2nd cycle that took place in May produced no change in curvature or stretched length.
If you remember I went from just over 30 degrees to 18 degrees after the 1st cycle.
The weekend that just passed was for the measurements from the 3rd cycle (early July injections) and injections for the 4th cycle.
My measurements as a result of the 3rd cycle injections are now 13-15 degrees depending on erection strength.
My stretched length has now gone to 16cm from 14.5cm.
The study co-ordinator was of the opinion that the treatment should now stop, which I agreed with.
So 13-15 degrees is a noticeable curvature but of a more cosmetic concern than a functional one.
So I'm pretty happy with the result overall - worth the wait :)
Finally, speaking to the other participants, a number of people have reduced their curvature by roughly 40-50% over 3 cycles. I didn't get a chance to speak to everyone but of those I did, a 45 degree improvement (started with 90) was the best result, and in this instance if I remember rightly, he had only a very small improvement after the first cycle.
Waited For Xiaflex :)
Thanks so much for the feedback. This is starting to sound really promising if your experience and that of the others you spoke to is anything to go by.
Yes, some very encouraging stories from the trials on both sides of the Pond. :) Thanks to all participants who took the time to post their experiences and results.
Any update guys?
I'm hoping for positive news from you all. I cannot wait for this drug to made public. I just want a cure for this awful condition.
veryworriedguy
My first post on the forum. Have suffered with Peyronies for 7 years and am very excited about Xiaflex. As a result of New Guy's posts in June I emailed Mandi at Andrology UK. Very excited as within 48 hours I travelled to London to the Clinic for assessment for the trial. Very disappointed as I did not satisfy the criteria due to the fact my plaque was too hard or calcified. The doctor explained the needles used were fine like Insulin needles and Auxilium did not want to run the risk of a needle break on the trial. So now I am hoping Xiaflex will be approved and I can pay for treatment. I hope the hardness of the plaque will not be a bar to treatment.
Quote from: John59 on October 30, 2011, 09:31:42 AM
My first post on the forum. Have suffered with Peyronies for 7 years and am very excited about Xiaflex. As a result of New Guy's posts in June I emailed Mandi at Andrology UK. Very excited as within 48 hours I travelled to London to the Clinic for assessment for the trial. Very disappointed as I did not satisfy the criteria due to the fact my plaque was too hard or calcified. The doctor explained the needles used were fine like Insulin needles and Auxilium did not want to run the risk of a needle break on the trial. So now I am hoping Xiaflex will be approved and I can pay for treatment. I hope the hardness of the plaque will not be a bar to treatment.
Thanks for your contribution. Pentoxifylline has a good track record for removing calcification. If you're not taking it already, perhaps doing so might mean that somewhere down the line you're suitable for xiaflex?
Thanks newguy. I've never tried Pentoxifylline but will do so and will report the outcome.
So, it's about a year since I had my last round of injections. Deformity has kept to around the 12 degree mark and any concerns are entirely of a cosmetic nature. I was worried that the curve would worsen again but touch wood, that doesn't seemed to have happened :-)
waitingforxiaflex
Thank you for the update. It may encourage people that are waiting for the Xiaflex.
It is very encouraging that your deformity is 12 degree after almost a year from the Xiaflex treatment.
James
Anyone on here that has received Xiaflex through Mr Ralph and his team in the last Xiaflex trial who could write about their experience in terms of the procedures and outcome?
Many thanks
T
A small search and I got:
UK Xiaflex Trials - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,1558.0.html)
You may want to read it until you will get some concrete answer.
James
I am a private patient of Mr Ralph's and have been waiting since February 2014 to go onto the UK Xiaflex trials. Does any member out there know what the status of Xiaflex is in the UK?
paul warwick thompson
See my answer bellow to tunnelman
James
Hi paul warwick thompson
I am just finishing a trial with Mr Ralph's clinic and awaiting the results in April.
If you have any questions please ask me.
Voglin
Please open a new topic detailing your experience.
It will help others that want to go on this way
James
Thanks for letting me do this james I certainly will.
I get my final results on 10th April so probably best to wait until then.
Don't need to thank me Voglin, this is how this forum is working, trying to help each other. :)
James
I'm new to this forum and to be honest a little apprehensive. I've had Peyronies for 11 years and apart from my wife and Doctor have never discussed it with anyone. The reason I'm posting this is that I'm about to have my first Xiaflex injection on Saturday and wanted to know what your experience has been of Xiaflex. I don't yet know if I'm one of the 50% on the trial that will undergo remodelling, but I would like to know what that actually involves? Everything I've read leads me to believe that after the injections you are left bruised and sore. Is this soreness to the extent that you are unable to function ie work, gym, for a period of time? My level of bend has been calculated at 55 to 60%, with a shortening of around an inch. Any help or advice you may be able to give will be gratefully received.
Hi AnonK. I started with the same bend as you and it's now down to about 30 degrees before my 5th shot. There will definitely be bruising and swelling, possibly even redness. It's very tender to the touch and if it's inadvertently bumped into you'll know it.
I usually have my shots early in the morning and am able to work the same day, no problem. I've even gone for runs the same day, with all my junk somewhat compressed so there is minimal movement going on down there. It's important to stay active and keep your endorphins pumping. This disease can get the best person in the dumps so do what you can to fight that, exercise definitely helps with depression, for me anyway.
Nighttime erections will probably wake you up in the first several nights at least once but that's a good thing. It gives you the opportunity to do the straightening exercises.
If you would like to see pictures of what my angry member after the shots I'll be happy to oblige. That way you will know I lived through it, had my temporary discomfort, but soldiered on and now I have all my girth back and my curve is more manageable, and hopefully will be below 20 degrees after my last treatment!
Congratulations on getting in the trials and I wish you the best of health.
Hi hope4all
I appreciate you taking the time to reply. I've also been contacted by someone who underwent the same trial as I'm about to start and he too had good results, so I'm going into it with my eyes open and hoping for the best. As I blogged previously I've had this disease for eleven long years and can honestly say that not one day of those eleven years has been the same as pre-diagnosis. Before Peyronies I was a successful salesman but eventually couldn't face clients with the same enthusiasm and lust for life that had made me successful. I now do a solitary manual job and estimate that over the eleven years have earned over £100,000 less than I would have in sales. And I work longer hours to achieve it! As a man that was brought up in a very macho environment I was very confined by what the definition of a REAL man was, and so to see my manhood disappearing just completely stripped me of my self esteem. They say time is a healer but I've never come to terms with it. Diagnosis, severe depression. Another disease that as a REAL man you can't talk about. I still wake most nights in a panic feeling almost tangible grief for the man I use to be, that I'll never be again. But the real regret for me are the eleven years that my Son has grown up without the Father I wanted to be for him. When your whole existence is haunted, laughter doesn't come easily and I know that's his perception of me. I do understand that Xiaflex is not a cure and I'm honest enough to recognise that I'm probably hoping for too much. But where do I go if this fails??? It won't give me back the relationships I've ruined, but if it is successful hopefully it will help me come to terms with whatever future I may have. Maybe I'll even be able to laugh with my Son occasionally! Tomorrow is my first injection and I will try to update on how it's going. Who knows maybe it will give a glimmer of hope to someone else.
AnonK
First, I wish you excellent outcome from the Xiaflex. :)
Wish you get back your manhood as it was before or at least close to that.
But not connected to the results of the Xiaflex treatment, you should make a timeout and re-think about what life is.
Especially laughing with your son!!!
Believe me I grow up in a not less macho environment, where at age of 11 if you are not smoking and don't have a knife in your boots you are not a man, but you must make a reset and see other sides of the life, not just your manhood.
I am 67, have Peyronies for 6 years and a 5 years old daughter, being busy with her make me forget that I have Peyronies :)
James
AnonK. Relate 100% to your situation and I'm really sorry to hear how this has turned your life upside down.
I went through severe depression and still have my good and bad days. I always enjoyed sex and when this happened I was 41 and still feeling like a stud, dealing with the onset of middle age, but having a lot of fun in the sack. I was really pissed that Peyronies Disease took away my manhood and changed my personality from outgoing to introverted and brooding. It took several years to snap out of it.
I've suffered from depression on and off since my 20s and this brought it to a new level of low. I got back on meds and I'm doing better now along with some exercise, not enough exercise but some. When I'm not traveling I work from a desk so I got a stand up desk and now stand all day and work which has given me some relief in my crotch and is suppose to be excellent for your health as well.
You can turn this around, you can change your thinking...I know macho guys don't like to ask for help in the psychology department, but talking to a therapist definitely helped me and the meds did too. Depression is just as insidious as Peyronies Disease and you have to actively get involved with both. If I were you I would concurrently treat your Peyronies Disease and Depression. Good luck AnonK with the treatment!