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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 firstname.lastname@example.org for further information.Many thanksYours sincerelyMandi KayesLead Clinical Nurse Practitioner to Mr David J Ralph
Quote from: UK on January 31, 2011, 03:59:14 PMI 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: newguy on January 31, 2011, 10:11:26 PMQuote from: UK on January 31, 2011, 03:59:14 PMI 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: George999 on February 01, 2011, 07:29:20 PMNewguy, 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: shrout on February 10, 2011, 03:33:45 PMThanks 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.
Quote from: fubar on February 10, 2011, 09:29:46 PMLets hope that our train comes soon especially for the young and those suffering for along time.Fubar
Quote from: Worried Guy on April 08, 2011, 07:17:02 PMSo 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?
Quote from: Worried Guy on April 08, 2011, 08:01:04 PMThis helps. Please keep us posted on your progression and I wish you all the best.
Quote from: waitingforxiaflex on April 08, 2011, 07:41:47 PMHi,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
Quote from: waitingforxiaflex on April 14, 2011, 06:19:39 AMGood news today!Measured my curve and it has gone from 30 degrees to 20 degrees.
Quote from: shrout on April 14, 2011, 09:29:07 AMI 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.
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!
Quote from: tunnelman on April 15, 2011, 06:21:24 AMHi GuysThis 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.ThanksTunnelman
Quote from: waitingforxiaflex on April 15, 2011, 01:26:56 PMHi 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!
Quote from: crashbandit on April 15, 2011, 11:22:17 PMI 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.
Quote from: crashbandit on April 15, 2011, 11:22:17 PMQuote from: waitingforxiaflex on April 15, 2011, 01:26:56 PMHi 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.