I'm just throwing this out for discussion, but I was diagnosed with Ulcerative Colitis (UC) in August of this year. I'd been having symptoms for about a year and a half, and it roughly coincided with a spontaneous flare of Peyronie's I had in 2013, after twelve years of normalcy (no progression). I did not put the two together in my mind (I thought I was just having a real stretch of bad luck). But both Peyronies Disease and UC are auto-immune problems. So in hindsight, I've come to suspect that my body's inflammation trigger turned on in 2013 and kick started my Peyronies Disease and brought on the UC. (I also have an auto-immune skin condition called Vitiligo, but this has not progressed in years). I guess I'm pretty much a grab bag of auto-immune disorders.
All this is to say, my doctor is very likely about to put me on Humira for my UC. Humira is being used for things like Rheumatoid Arthritis, and some other auto-immune disorders, most recently approved for Ulcerative Colitis. Interestingly, Humira is an immunomodulator - it essentially turns off part of your immune system, specifically the response of TNF-alpha (tumor necrosis factor alpha). And what is considered a big culprit in Peyronie's, which our beloved Pentox is supposed to fight? TNF-alpha!
So I'm hoping that Humira will not only help my UC, but also "turn off" my Peyronies Disease, which has slowly but surely continued to show more plaques over the last two years. I will be sure to keep you guys updated if I see results (or even if I don't). Unfortunately, Humira is ridiculously priced (something like $3,000 per month) if you don't have insurance prescription coverage and prior authorization, which you could never get for the off-label treatment of Peyronie's. But it is important to know if it works. And I can promise you this, if I see a positive impact on my Peyronies Disease, I will press my doctor to push the company to study its application towards Peyronies Disease. I'll make it my mission to get that ball rolling. This is one case where I'm happy to be a guinea pig.
Best,
Nemo
Really good thoughts here Nemo. Don't stress too much about Auto Immune. Everyone has some form of auto immune. Hell allergies are auto immune. Nobodies immune system is perfect if it were they would live forever. Think my peyronnies came on from Tylenol abuse actually. Well Vicodin abuse that has Tylenol. That was years ago though. Peyronies Disease is a rare side effect of too much Tylenol use. Although it's hard to tell.
Nemo,
this is a very good discussion topic.I work in an office of Gastroenterologists and I am very familiar with Humira and its uses, we have many patients with UC and Crohns disease. While we do not deal with Peyronies patients I will go to my physicians and see what tneir opinion is on its use with Peyronies. I hope to get back with you on this soon.
Thank you for bringing this to us
Stabler67
Stabler, I think the thing to mention to them is the TNF-alpha aspect. Supposedly TNFa plays a role in Peyronies Disease, and that's also what Humira is supposed to bind, or suppress. So I'm just theorizing that as a systemic treatment much more potent than Pentox, Humira might realize some benefit with Peyronies Disease. Just a theory but would be interested to hear their thoughts.
Thanks,
Nemo
Quote from: Nemo on December 17, 2015, 07:36:17 PM
And what is considered a big culprit in Peyronie's, which our beloved Pentox is supposed to fight? TNF-alpha!
No, Pentoxifylline inhibits tgf-beta Pentoxifylline inhibits transforming growth factor-beta signaling and renal fibrosis in experimental crescentic glomerulonephritis in rats. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/18679024)
Humira (adalimumab) is quite a serious beast with serious side effects. In my view it reapeates the strategy of GC's for serious autoimmune diseases control but not the tratment. I would think carefully before even starting it for Peyronies Disease....
Pentoxifylline inhibits both TNF-alpha and TGF-beta, it's not an either-or proposition.
And yes, Humira is a serious drug with potentially serious ramifications. So is ulcerative colitis, which is what I'll be taking it for. But you are correct in that thinking carefully is always a good idea.
Nemo
it is agreed that any medication taken for a reason other than its intended use should be researched by you the patient and your physician. The worst that can happen is they will tell me that it would do no good and be able to give me reasons why, answers that maybe you as a patient would not be able to get. Also our information will be coming from a trusted group of physicians, I dont just trust them because I work for them but because I am one of their patients.
I certainly think it is worth asking about.
Stabler67
In my case, I suspect that anything that seeks to turn off the "inflammation switch" that gives me conditions/diseases like: Ulcerative Colitis, Vitiligo, Peyronie's Disease stands to benefit more than just the condition it's being targeted at. For instance, there is now a case of the rheumatoid arthritis drug Zeljanz curing an RA patient of her Vitiligo. So now it's being looked into for its potential treating Vitiligo (and also Ulcerative Colitis). So, in a similar way, I'm hoping that another biologic, Humira, which was originally an RA drug, might "turn off" both my colon inflammation and the inflammation that is behind Peyronie's scarring. Especially since both seemed to flare up at the same time, leading me to believe they're connected in some way.
It's an interesting theory I'm anxious to investigate.
Nemo
I just wanted to post an update, with the holidays and the flooding in my area I havent been able to get to work so I have not been able to inquire with my physicians on Humira in regards to Peyronies. I have not forgotten about this though and will post as soon as I gain some information.
Stabler67 :)
Sounds good. I talked about it with my own Gastroenterologist, and she didn't offer much more than "Well, I don't know. TNF is kind of a common suspect in a lot of inflammatory issues, so who knows?" ...
I think the fact that I have multiple auto-immune conditions is little more than of passing interest to her - she's strictly focussed on the ulcerative colitis.
Happy new year,
Nemo
Ok guys here is what I was told.
While Humira is not intended to be used for Peyronies it is possible that it could be a benefit in regards to the inflammation, it should not be considered or thought of as a treatment for Peyronies. It will not hurt the condition at all but would have no effect on removing or reducing the scar tissue which causes the blockage and or indentations. My physician stated he had been asked about this exact thing recently.
So the answer from a Gi point of view is it may help with the inflammation aspect of Peyronies but nothing more, and certainly wont do any harm.
Hope this helps some,
Stabler67
Stabler, that's about what I was figuring. I don't see any way the Humira would remove scar tissue already formed, but I can imagine it stopping the inflammation and thereby halting the progression of Peyronies Disease. Will likely be a couple more months before I start on Humira, so this will be a long process, but I've been essentially in an active phase for two years now, so anything to halt the systemic inflammation in my body will be welcome. I'm also planning on seeing a rheumatologist to see if he/she can offer any help since my various docs only want to look at their specific field: gastro, dermo, etc.
Thanks for checking.
Nemo
You are certainly welcome, if you come across any othe questions that I can help with please let me know.
Stabler67
Nemo,
I thought you might want to know about adverse reactions to Humira that resulted in death, which is not completely uncommon.
Humira and Death - Suspected Cause - Reports of Side Effects (http://www.druglib.com/reported-side-effects/humira/seriousness_death/)
With my case I plan to ask my Urologist to do a FIT (Fecal Immunochemical Test) for a whole host of food sensitivities beyond my confirmed gluten sensitivity. For me gluten not only causes issues in the intestinal tract, but causes inflammation and other foods may be doing the same. It may be worth getting a FIT test to see if your body is having an inflammatory response to foods, particularly grains. I think this is why I am having so many connective tissue problems beyond Peyronies.
John
I just wanted to add some insight to Stabler67 comments for the potential of TNF-a inhibitors like Humira for treatment of Peyronies Disease. Tumor necrosis factor-alpha (TNF-α), a pro-inflammatory cytokine that may have an effect on smooth muscle cells of the corpus cavernous and collagen and elastin expression.
First, I am 8 weeks into treatment with Cimzia (a TNF-a inhibitor similar to Humira) for axial spondylitis (primarily back pain). AxSpA is an inflammatory disease that can share symptoms with Ulcerative Colitis, Crohn's and Psoriatic Arthritis. I started having severe back problems two years ago, and in hindsight Peyronies Disease. TNF inhibitors can take anywhere from a couple weeks to a few months to kick in.
I have two peripheral symptoms with my disease that I have noticed may be associated with my disease psoriasis and Peyronies Disease. The psoriasis is a toenail with some pitting and minor yellowing that has begun to heal/regrow in the last few weeks.
It is only after the last shots in the past week that I have had significant improvement in reduction of back pain and other symptoms.
My Peyronies Disease/symptoms:
I first noticed the girth of my erect penis being larger about 2 years ago. Initially I thought a little extra girth might be positive if it came with aging. There is now a bulge that is about a third of the erect length and is about 30-50% larger in diameter than previously and the rest of the penis. There has been some pain from it feeling too erect. Initially I discounted this as the increased pain/stiffness that also seemed to increase the intensity (i.e. pain is pleasure).
I have only started googling Peyronies Disease related to my inflammatory disease in the past couple of days. That is because some of the erection pain and feeling too erect has been reduced in the last week - this was unexpected.
Hopefully more research can be done with regards to TNF inhibitors like Cimzia and Humira. Unfortunately they are priced to treat diseases that are considered to be more serious and these biologics are some of the most profitable drugs on the market. To be fare though they are relatively expensive to produce and distribute. The pricing models of specialty drugs make it unlikely to ever be available off-label by insurers. I suppose China or India could get around some patent restrictions and pursue off-label research and prescription. It'd be interesting to see if low dose treatment with TNF inhibitors could be beneficial - full dose may literally be overkill for ED. It's unfortunate that secondary symptoms are often overlooked in auto-immune diseases - doctors don't seem to have time to address all our issues - inflammation seems to effect every body system.
Emerging Role for TNF-α in Erectile Dysfunction
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031865/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031865/)
and
TNF-α knockout mice have increased corpora cavernous relaxation
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2843140/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2843140/)
I have seen very few comments on sexual disfunction or ED in the auto-immune online community, so I hope this is helpful.
SpondyPeg, great post. Thanks.
I have not actually started on Humira. I moved from the US to Amsterdam earlier this year, and the US doctors didn't want to start Humira right before a move. Then when I got to Amsterdam, the doctors were much more conservative in their approach to colitis, since my clinical symptoms are mild. So bottom line, six months later, I'm still not on Humira. Now I'm going to be moving to Saudi Arabia for work, where hopefully, I'll be long enough to FINALLY get Humira started. And I'm ready for it. My Peyronie's is very strange, and I'm certain its directly related to my colitis and vitiligo inasmuch as it's a manifestation of systemic inflammation issues.
My Peyronies Disease since 2013 when the colitis presented has never been hard plaques or "bending," it's been soft, firm nodule, that months later fade to almost imperceptible, but leave indentation or wasting. Ironically, this has left me straighter than I've ever been in my life, but with mild depressions/wasting that frighten me every time I feel them, fearing what will come next.
I really believe hardcore anti-TNF agents like Humira would at least stop this situation from getting worse, so I'm ready to get started on Humira. Will likely be a few more months though, unfortunately.
Thanks for your post - and keep us updated, pleases, if you see any results insofar as your Peyronie's.
Best,
Nemo
Be very careful in considering this drug. It has been shown to cause lymphoma and the FDA has attributed at least 5 deaths because of this.
Uncontrolled Ulcerative Colitis ain't no walk in the park, either. Considering my multiple auto-immune issues, I'm willing to take a risk on an FDA approved treatment.
Nemo
Nemo,
Do you consume anything that contains gluten, i.e. Barley, Wheat, Rye, and Oats (which have Gladin)? UC is one step away from Crohn's, which is the worst of all gluten intolerance issues. Being a person with a gluten intolerance, I know all to well how in impacts the digestive system.
QuackAttack, we've been through this before. No, I don't have gluten intolerance and this isn't a thread I started to discuss the origin or treatment of Ulcerative Colitis. It's about Humira and other anti-TNF drugs as they might (emphasis on "might") be helpful in treating Peyronie's Disease. While I appreciate your concern, I'd like to stick to the topic.
Nemo
@nemo: any results from Humira?
pey ron, I've been living overseas since 2016, and I've found doctors overseas are far less quick to jump to the biologics like Humira in the treatment of Ulcerative Colitis, especially in a relatively mild case like mine. As a result, I'm still not on a biologic, only lower strength anti-inflammatory treatments that are limited to the colon (Mesalazine), and an immune suppressant called Azathioprine (or Imuran).
So, no Humira for me yet. Thankfully, my Peyronies Disease has been in a period of stability since early 2017.
Regards,
Nemo
Could you have been on to something Nemo? Recent study released where adalimumab (humira) has helped reduce nodules in patients with Dupuytren's.
https://www.medpagetoday.com/rheumatology/generalrheumatology/98527
Very interesting. Believe it or not (and I guess this is a good thing), all these years later, I'm still not on Humira for my Ulcerative Colitis, and it appears to be in remission (for how long, who knows?).
But this is interesting, nonetheless.
nemo
Beat me to it, I read about that too. It is not the only thing that acts against Tns-alpha, mind you.
https://dermnetnz.org/topics/tumour-necrosis-factor-inhibitors
That has a link to a specific topic on it.
Catechins and curcumin are already widely reported for anti inflammatory and anti fibrotic properties.
They are more readily available, both low molecular weight so could likely be applied transdermally with DMSO if not other carriers.
Tried a few biologics (TNF blockers, integrin blockers) for other conditions. They worked for those, not the peyronies.