ACCOLATE to soften scar tissues

[james1947]

I have opened this new topic because it sounds interesting and promising.
I have copy/past a few sentences from an other topic.
Funnyfarm:
I have been having excellent luck softening my scar tissue with oral accolate (20mg 2x/day) over the past 10 days.   So maybe I won't need topicals or injections if the softening is permanent.. only time will tell.  I am surprised it is working much better than the Pentox and without side effects.
Hawk:
Isn't Accolate an asthma medication?  What is the method by which it would impact plaque?
Funnyfarm:
Hello Hawk, yes it is an asthma med, but my peyronies specialist prescribed it off label.  He is a board certified Urologist and Plastic Surgeon and said it is also used for some breast implant patients for a condition known as capsular contracture.

Zafirlukast (Accolate): A New Treatment for Capsular Contracture by S. Larry Schlesinger, MD, FACS - RealSelf

When I told him the inflammation has been persistent he gave me the script for accolate.  So I am not sure is it will clear plaque, but it has reduced (but not eliminated) my inflammation and most importantly, pain !  The penile scar tissue is much. much, softer (even a recent scar on my forehead and foot softened a huge amount).  Since the peyronies struck I have quite a few minor accidents but I won't get into that..   I don't want to jump to conclusions though regarding its efficacy.  It has only been 12 days so I don't want to get my hopes too high for a permanent improvement.  I have been disappointed too many times in the past using other modalities.    
Also the pills are not cheap about 1.50 ea or 3.00/day (I don't have insurance) but I plan to take them for a few months.  

James

[funnyfarm]

Thank you James I will update progress in a month or so.  If anyone else tries this medication please feel free to do the same.

[Hawk]

Funnyfarm,

Who is your doctor?  Has he used this before?  Since it seems he has also used Pentox has he expressed an opinion on the differing or comparative rolls of these two drugs in the treatment of Peyronies Disease?

[George999]

Hello funnyfarm.  Congratulations for having an innovative urologist who is not afraid to try an off label drug if it has potential.  I REALLY, REALLY hope this keeps working well for you and it is good you are passing along the information here.  There are quite a few guys around here who cannot tolerate Pentox, either because of the gastro-intestinal issues or the anxiety issues.  Thats why we REALLY, REALLY need more options in addition to Pentox and CoQ10.  Do keep us up to date on how this goes.  If it is working, I really wouldn't try to figure out WHY it is working at this point, but I would just be very, very thankful it IS working.  Many of these drugs have yet undiscovered benefits.  The medical press is full of accounts of exciting new uses for existing FDA approved drugs.    The FDA should really be analyzing the evidence and conditionally approving these drugs for new uses when those applications show potential.  They should not be requiring a whole new round of gazzilion dollar trials for each new use.

[LMP]

Those results in 2 weeks are very good, please keep us updated.

[funnyfarm]

My two peyronies physicians are in Los Angeles,  but my local GP gave me the script for the accolate.  He offered 10days supply 20 pills, with multiple refills.  I was told to just take if for a few weeks and discontinue if there was not improvement.  Surprisingly the softening happened from day 3 to day 5, and slightly more from day 5 to day 7.  The second week it continues to be about the same (good, but still painful masturbating).  So I  am not out of the woods yet.  Prior to this I have inflammation and pain 24/7 (1 to 3 out of 10), so this is a very welcome change.

I should mention I also take 1200mg pentox daily (stared Nov 1), it is possible the combination of the two drugs has a synergistic effect, however I know the pentox alone did nothing for my pain, and little in terms of softening.  I don't want to stop taking it though just in case it is also helping me heal or had a delayed onset of pain reduction.

I plan to continue accolate treatment unless I develop  a bad side effect.  I was warned in rare occasions it can effect the liver after prolonged use.  So I will have my blood checked monthly.  

The good news is if you want to try the accolate you should know in a week or two if it is helping.  The doctor also told me singulair can be prescribed instead which only needs to be taken once a day (but was more expensive at my  pharmacy and I could not find any studies that endorsed it for scarring.).

[George999]

You may find adding CoQ10 to the mix to be helpful for the pain also.  I continued to have pain upon stimulation with Pentox but combined that with Ubiquinol and pain stopped immediately.  - George

[funnyfarm]

thank you george.  I have been taking Ubiquinol, and other natural supplements, for over a year however.

[skunkworks]

How is it meant to work? Decreasing inflammation?

[George999]

Skunkworks and anyone else wanting to know more about how accolate works - be sure to read the paper cited by funnyfarm and included by James at the beginning of this thread.  It should pretty much answer most of your questions and those it doesn't are probably pretty much unknown at this point.  I would also suggest that we shouldn't try to be advertising the name of this Dr since he is willing to put himself out on a limb for the sake of funnyfarm.  At this point we should be simply waiting to see how this goes with funnyfarm and anyone else interested in taking Accolate could snatch a copy of the paper below and try to convince their doc with it.  Otherwise one could always try to get it from an Internet pharmacy without prescription, BUT anyone doing so should be getting regular liver enzyme tests to make sure there are no hepatic complictions going on as this drug can affect liver funtion.  CoQ10/Ubiquinol would likely protect against that to a certain degree and Milk Thistle even more so.  I would definitely be considering Milk Thistle if I was taking Accolate.  - George

Funnyfarm:
Zafirlukast (Accolate): A New Treatment for Capsular Contracture by S. Larry Schlesinger, MD, FACS - RealSelf
James

[goodluck]

My fingers are crossed that this is a great break thruough.  

I ditto George on the Milk Thistle.

Just wondering if it could be effectively made into a topical and thus avoid the digestive track and much of the liver.?

[funnyfarm]

Thanks George I am a big fan of your posts pertaining to supplements.  I have been taking milk thistle 2x/day since I started and also avoiding alcohol, eating healthy, and exercising.  I will have my blood checked in early Jan to make sure all is well.  Also I made my acupuncturist who I see 2x/week is aware of my drug regimen and she says my pulse and tongue look good so far, so my "liver energy" is still healthy..

To me having my whole body healthy is essential to healing so if the accolate starts to have a negative impact I will discontinue promptly.

[james1947]

Sorry, I am not so good in English.
Can someone tell me what is "Milk Thistle"?

James

[ashtown]

Take a look at the Wikipedia page James and scroll down to Health Benefits for an explanation. It's basically a plant extract that is thought to help the liver.

http://en.wikipedia.org/wiki/Milk_thistle

[james1947]

Thanks for the link Ashtown.
By the way, it is used in the "old fashion country medicine" by elders in my town. It grows everywhere.

James

[LMP]

Any chance of a mini update please Funnyfarm? Would be a great Christmas present to hear that your success continues.

[funnyfarm]

Hello, not much new to report.  Today is day 22 on accolate.  Softening is the same as day 7, no better and no worse.  I did cut my pentox down to 800mg from 1200mg for a few days so far and no change, but I think I will go back to 1200 just to make sure I am doing everything I can.  

I would say 80% of the scar tissue is soft.  The problem is the 20% remaining (about he size of an aspirin) continues to cause issues, with pain and inflammation (not as frequent as before but still it bothers me).  This is the site where the scarring began so perhaps in a few months it will soften as well.  The more I read about scar tissue the more I see it can take a long time to resolve, so I am trying to be patient.  

I will get my blood tested next week and report back if anything is outside of normal.

[LMP]

Thanks for the update.

[rd]

Funnyfarm, I have not taken accolate, but what you describe as softening is similar to my experience before mine disappeared. The plaque softened pretty quickly atleast for me then remained soft for a good amount of time but was actually more tender to the touch then when it was hard. Then it eventually went away. Even after the plaque was completely gone it was tender for a while before feeling like normal(prepeyronies) I am dealing with some other plaques but it reminded me of what I noticed when the two of mine went away. So hopefully yours will do the same.

[funnyfarm]

Thank you RD, I read about your stem cell treatment a while ago, interesting stuff.

The harder nodule at the epicenter of the scar has softened slightly, but not enough.   I think it is tough to draw conclusions because inflammation can make scarring worse, but it can also be part of the healthy healing process as the blood vessels "clean" the tissue.  So I reframe from taking oral or topical anti-inflammatories for now.

Did you problems eventually resolve RD ? Thanks.

[rd]

The treated lumps did resolve, and another none treated lump on the left side of my shaft just slightly off from the center top about a inch down from the head. I have a new well not new anymore but a new lump that appeared right under where the old lumps were that is constantly changing, as of right now it appears to be getting softer and smaller but its done that before then a few days/weeks later its big and hard again. The ones that were treated took a while but got soft and slowly seemed to fade away. I also have one small one on the left on the bottom side of the shaft that I only know is there because I found it examining myself but it doesn't hurt or cause any deformity just a small knot or lump there that I am keeping a eye on. My deformity is hardly noticeable but I know its there and it causes pain and discomfort if I touch the area to much. But the pain/discomfort is a lot better than it use to be.  

[funnyfarm]

Thank you for the reply RD.   We seem to have similar symptoms.  My lump at the epicenter of the scar, is sometimes hard or rubbery, especially in the morning when I wake up.  After I take my pentox and accolate, there is more blood flow and it softens.

Since I can not increase pentox dosage due to side effects,  I may increase the accolate dosage from 40 to 60mg next week, if my blood tests are okay, too see if I can get additional softening.  

Right now, mainly though I need to be patient and continue to pray for improvement.  I appreciate your info and support.  

[funnyfarm]

Just a quick update, I discontinued my pentox treatment on Dec 26th due to contracting the flu.  I was afraid it might make it harder to fight the virus due to potentially lower white blood cell numbers.    

Although I see less blood flow to my extremities there has been no reduction of softness of scar tissue or increase in penile pain.   I would like to believe this is due to the accolate, but honestly there is no way to be sure.  

I will likely start the pentox back up again soon, just to insure I am getting maximum benefit.

[james1947]

I was always stopping the Pentox when having flue until the last one.
Last flue I didn't stop the Pentox and the flue gone after a week.
One of my old friends, a GP has told to me long time ago that flue is over in 7 days if treated with medications and is over in one week if not treated.

James

[funnyfarm]

Restarted pentox again yesterday 1200mg.   I am urinating quite a bit, just like before, and also have slight burning of the urethra once again.   Before I suspected these were due to my prostrate, but now I know it is from the pentox..

Also, I feel very jittery.  I avoid caffeine, but it feels like I had a bunch of coffee.  If things get too bad, I will reduce the dosage.  At least my flu is gone !

[LMP]

I've been following this thread with great interest as it seems to fit in with my symptoms too. Namely flaccid pain and hard plaques. I only have a slight curve and some hourglassing but its the pain and lumps that bother me the most.

Funnyfarm - do you continue to see improvements and how much better are you than when you started? Has anyone else tried accolate?

Thanks

[funnyfarm]

LMP at this point I would say the scar tissue is about 75% improved.  However it has not reduced in size by that amount, but rather it has softened by 75%.   Also I still have pain/soreness which fluctuates quite a bit from week to week, but I would say it is not much better overall.  However I would imagine healing could create some soreness, so I don't want to jump to conclusions yet.

Also I increased my pentox to 1600mg/day a few days ago, which probably improved softening from 60% to 75%.    At this point I really don't know if I am getting more benefit from the pentox or accolate, but I don't want to discontinue either while I continue to see softening.

I think if you try the accolate for a week or two you should know by then if it is softening things or not.   I don't know for sure but my hunch is that the accolate helped more at the beginnning, and now the pentox is helping more at the higher dose.   Also the accolate is more expensive, but unlike the pentox has no side effects in my case.

My plan is to take the accolate for another month or two and then stop and continue with the pentox.  Since I am only 6 weeks into this treatment it is too early to give you any hard advice.  

[LMP]

Thanks for the update. Going to ask my GP and/or urologist about accolate.

[LMP]

However I would imagine healing could create some soreness. .

Since starting Cialis all of my flaccid pain has re-appeared. Is pain ever a good thing?

[ashtown]

However I would imagine healing could create some soreness. .

Since starting Cialis all of my flaccid pain has re-appeared. Is pain ever a good thing?

I would say it can be in the sense that pain might indicate there is healthy tissue reacting to the situation and a calcified plaque wouldn't do that. When I last spoke to the urologist and mentioned my penis hurt for a long time if I prodded the plaque he said that was a good sign.  

[LMP]

Well that's something I suppose. Thanks.

[Hawk]

Ashtown,  I have to question that there would be no pain with calcification.  The calcified plaque itself may not hurt but the surrounding tissue could.

Generally speaking pain is a warning sign.  In the case of Peyronies Disease I think it would always indicate the presence of inflammation or active phase (acute phase) of Peyronies Disease.

I search the recesses of my mind for another explanation and cannot come up with one.

It could however be slight and temporary so it does not necessarily mean a whole new round of deformity.

[ashtown]

You have a lot more experience than I do Hawk and I'm still at the stage without calcification as far as I know but perhaps it makes a difference if the pain is ongoing for no obvious reason or has been provoked by direct contact and handling. Personally I find the less it is touched the better.

I feel much better since stopping with the VED and doubling my Pentox to 6 tablets a day a couple weeks ago. The deformity is no better but at least it has stopped getting worse and the scar feels much softer. I'm hoping that continued use will begin to lessen the curvature.  

[funnyfarm]

Ashtown my pain is also in flaccid state, at the site of the plaque.  I noticed that every night I took cialis, pain was worse in the morning so I stopped taking it.   In my case when I take cialis the erections are very very hard at night, and I think they stretch the scar tissue more and for a longer period than just a normal erection without the cialis.   It is kind of like going to the gym and being sore the next day.  

Now that the scar tissue is softer I may try the cialis again.    Also, VED made my pain very bad.  I can only assume it provoked the scar tissue way too much.  

I am researching more about inflammation but we have similar symptoms and my hunch is that intermittent, low level soreness is part of the process of tissue remodeling or healing.   Inflammation that is very bad, or  does not let up at all, is probably problematic in the sense that it will not provide the scarring the right environment to heal.

[ashtown]

When I first went on Cialis the urologist told me that erections would initially be more painful but it would help over the longterm to heal and reduce the scarring.

My only discomfort right now is actually due to my GP and local pharmacy who are horribly disorganised and I've now been without Cialis for a week. After about 3 days I have found my penis frequently feels cold, which I hate so I had to complain earlier and they've promised they'll have it on Monday. Nevertheless I think the combination of less VED and more Pentox is helping.

The irony for me is that I can't really remember the last time I had pain during an erection but I do get it from time to time when flaccid, however I'm sure it would be an awful lot worse if I wasn't taking the Pentox etc.

[funnyfarm]

I also only experience pain flaccid, never erect.  I stopped the pentox for a few weeks due to the flu and the tissue really did not get much harder.  The pain was not much different either.   I would like to think the accolate/pentox is working and at some point things will resolve and we can discontinue, but I no longer get my hopes up too much..

[LMP]

How are you doing with the Accolate FF? Still holding up?

[funnyfarm]

Things are going well James.  The scar still continues to slowly soften.  Unfortunately since I have been doing both pentox and accolate, we will never know which was more effective.  I will stop the accolate in 3 weeks which will be the end of the 90 day treatment. Obviously if someone that can not tolerate pentox tries accolate, we could get a better understanding of how effective it is.

I still have pain though unfortunately so I am working on dietary adjustments, and it seems to help.  But requires more discipline than taking a pill !

[LMP]

But the pain is less than pre accolate?? The softening is encouraging.

[funnyfarm]

Yes, before it was quite a bit worse.  But I started the pentox only a few weeks before the accolate,  so I am not sure which had greater efficacy.

[yyy]

funnyfarm,

What do you exactly mean with softening? plaques passed from calcified to fibrotic? or you already had fibrotic lumps now disappearing?

[funnyfarm]

I have one large lump next to the glans.  It is visible through the skin and although not calcified it could be labeled as fibrotic scar tissue.

It is still there but now it is much softer.  Not as soft as the surrounding skin, but not hard like before.  I hope this helps you.

[yyy]

yes, it does help a lot.
I have a fibrotic lump, pretty hard and palpable but not calcified (fortunately)
The problem is that caps are 20mg; I have to take 2 of them,and not with food. As anti-asthmatics cause insomnia, I was wondering when I could take the second one...maybe at 4pm? Please tell me what you think about that, thank you  

[funnyfarm]

Hello, I have had a history of insomnia and I can tell you I take the second pill right at bedtime and it never effects my sleep.  Also I believe the half life is very long like 12hrs so if you took it 1 hr before dinner you would also be fine.  But yes I also have had asthma and I know the inhalers can cause very bad insomnia, but I think they somehow effect your system differently.

Finally I read the pill is only 40% less bioavailable when taken with food so occasionally if I sleep late I will take one with breakfast knowing I am still getting some benefit.

[yyy]

thank you for your reply.  

[LMP]

Any update on the Accolate experiment?

[skunkworks]

Seconded, this has been a very interesting thread! I'm not far from giving it a shot myself, if I can get it here in Aus.

So many questions though. Does the softening stay after cessation or will it revert back to how it was before? While you're on it is the scar tissue slowly healing/receding and would staying on it long enough mean a cure? I guess we'll not know until more of us have tried it, as I doubt we'll ever see a clinical study on it and Peyronie's.

[funnyfarm]

Skunk, I do not know the answers to your questions.   I was told to take the accolate for 90 days which I did and then discontinue.   It has now been 10 days since I stopped and the scar is still soft.   However, I still get the inflammation, so I am still having issues with pain (although not as bad with better diet now).    Also, as I mentioned before unfortunatley there is no way for me to tell if pentox contributed more to the softening or the accolate.  Except for a 10 day period in january when I stopped taking pentox (with no change in symptoms), I have always been taking both at the same time.

I may stop the pentox in another month and see if anything changes.   If someone who can not take pentox tries accolate, that would be a more useful evaluation imo.

On good thing, I usually am sensitive to meds, but had zero side effects when I was taking the stuff.  

[skunkworks]

Has erection strength/quality improved?

[funnyfarm]

No but this has never been an issue for me.