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Collagenase - where is it available?
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06/29/09 03:01
jimh 
06/29/09 03:01
jimh 
Re: Collagenase - where is it available?

This sounds extremely dangerous to me. Santyl is a topical medication, and if DMSO succeeds in moving this molecule through the skin and into your tissues (which I doubt), there is no way to target it. You do not want collagenase in your blood stream. Xiaflex (injectable collagenase) is intended to be carefully injected into the Dupuytren's tissue, because it could damage other tissue. Many structures in your body are made of collagen and you do not want collagenase indiscrimately attacking them.

06/30/09 23:35
bstenman 
06/30/09 23:35
bstenman 
Re: Collagenase - where is it available?

I agree that there is potential risk in using DMSO with another substance but it has been widely used by Dr. Stanley Jacobs for 4 decades and no harm has come to the patients treated at the medical center where he works and has done his research. DMSO has been shown to be very effective in reducing scar tissue that results from arthritis related inflammation of the joints and increasing mobility and reducing pain.

Risks come from using any of a variety of chemical contaminants as the DMSO is very effective in transporting agents through the cell walls. This would make it a good match for use with another substance, but the purity would be a concern and a lotion is going to have multiple ingredients. As for traveling through the blood stream and causing a problem in some other organ, this has not been shown to be a problem with the DMSO products in use, though the main added ingredient is urea.

Every treatment for Dupuytren's carries with it risks to consider and I have trouble seeing where this is any different.

07/02/09 20:42
dana

not registered

07/02/09 20:42
dana

not registered

Re: Collagenase - where is it available?

Katherine,
I actually just got a perscription from my doctor and filled it via our mailorder plan with CaremarkCVS. That being said, I would then think that CVS itself would have it, or could obtain it for you. Should be much cheaper to do the 3mnth mail order if you in anyway can. From what my onologist said, any doctor can write the script. He knows I have researched this, and Santyl does no harm to healthy tissue -- the only thing that might have happened is nothing.

Good luck!
Dana

07/02/09 20:59
wach 

Administrator

07/02/09 20:59
wach 

Administrator

Too good to be true?

Quote:



... He knows I have researched this, and Santyl does no harm to healthy tissue -- the only thing that might have happened is nothing. ...
Dana



Sorry, but I have difficulties to believe this. How should a chemical be able to distinguish between "healthy" collagen and "sick" Dupuytren's collagen??

We had wonderful reports on topical Verapamil which then turned out as useless. Now it seems to be Santyl's turn. I don't question Dana's improvements but if Santyl would work so well for everyone I am sure Joe and John would have reported it long ago.

Wolfgang


Edited 07/02/09 22:21

07/02/09 21:27
moondanc 
07/02/09 21:27
moondanc 
Re: Collagenase - where is it available?

I would caution those using Santyl to be extremely careful. In fact, I would caution you NOT to use it. I was in the Xiaflex study 1.5 years ago. They were extremely careful to take multiple blood tests many times over the course of the year the study ran. They did them before the injections, after the injections, a w2eek after, a month after 3 months after, 6 months after, etc. to find out how collagenase "spreads" in the body. It can affect the immune system and many patients in the study had swollen lymph nodes in their armpits for days - weeks after the injections.

That said, my DC has become so aggressive after Xiaflex injections that I-- and others-- can see weekly, almost daily changes in my DC. Last week I could bend my fingers to type, this week it is exceedingly difficult. Since being in the study where I had only the ring finger -MCP-on my right hand treated, my DC has progressed to the PIP joint on my ring finger and two more fingers on my right hand, both MCP and PIP joints. It has also become much more aggressive in my LH hand where 1.5 years ago NONE of the fingers qualifed for the Xiaflex study. I now have three fingers on my LH affects, both MCP and PIP at close to 45 degrees--- all of this in 1.5 years. Since the study only tracked patients for 1 year-- in fact in my study they pushed it up to 11 mos., there is no data on quickly DC returns with Xiaflex. For the life of me-- given Xiaflex does not correct or deal with lumps on the palm or skin tethering-- and from what I was told by technicians in the study, is not much more than 50% effective on PIP joints-- why there is all the excitement about Xiaflex.

11/04/09 00:39
genepatek@rocketmail.com

not registered

11/04/09 00:39
genepatek@rocketmail.com

not registered

Re: Collagenase - where is it available?

I have Dupuytren's Contracture and have consulted my Doctor. He indicated the only way to correct it now is to have surgery. He mentioned a new injection of collagenase is being tested but not available yet. I prefer not to have surgery. Are there any clinics that are testing this procedure that I could volunteer? How far away is the approval of this injection? I have it in both hands and one hand is starting to develop it in the ring finger as well. Any help is appreciated.

11/04/09 09:13
Wolfgang

not registered

11/04/09 09:13
Wolfgang

not registered

Re: Collagenase - where is it available?

Gene, for alternatives to surgery you might want to read this web site (menu on the left side, specifically "needle aponevrotomy", "Radiation therapy", and "Other therapies" - Collagenase and Steroids. Note that none of the therapies can cure Dupuytren's disease, that's just not feasible. Therapies can make the hand functional again (if you have a contracture) or reduce pain or delay surgery.

Collagenase is not approved yet for Dupuytren's, probably by year and or early next year, but it is not the solution to each and every case of Dupuytren's disease. It can remove a contracture.

Wolfgang

11/04/09 18:33
bstenman 
11/04/09 18:33
bstenman 
Collagenase treats the effects of Dupuytren's but not the disease itself

I view Xiaflex as an alternative to NA or a fasciectomy for treating the effects of Dupuytren's, the contractures and nodules. There is no reason to think that Xiaflex is a treatment of the disease itself and therefore likely to halt or even slow the progression of Dupuytren's in individuals.

I suspect that the researchers wanted maximum effect and so over-treated their subjects hands by injecting the Xiaflex throughout the hand instead of using it to loosen the chords at key points in the contracture as is done with NA. The negative side effects may be due to the overzealous injection of the Xiaflex.

It is not at all unusual for medical practitioners to over proscribe medications and to overdose their patients. With such a tiny study group no doubt the people performing the injections decided to do a heavy dosage on everyone rather than 2 or more dosage levels as their would have an even less statistically relevant group for later analysis.

The only treatment that has shown to have any effect on the progression of Dupuytren's is X-ray treatment and it is most effective when done at the early stages. I had it performed on both my hands after receiving NA on them both. My left hand has progressed much further than my right hand and now 2 years later the progression of the Dupuytren's on my right hand has appeared to have halted (at least in terms of flexibility which is the same as it was after the NA) while by left hand is going back to where it was prior to the NA procedure.

My results may not be typical but it convinced me of the need for early treatment and treatment by someone experienced with Dupuytren's who could palpate the hands and make an accurate assessment of the areas that should be treated. For me it is also clear that both hands should be treated even if one is not showing outwardly visible signs of the disease.

11/05/09 02:25
flojo 
11/05/09 02:25
flojo 
Re: Collagenase - where is it available?

Each person is different and each hand is different. My right hand was clearly active and progression was obvious. I now know what to watch for. My left hand has slight indication of Dups, but IF I had not had it in my right hand, I wouldn't even notice it.

I agree that RT at the early stages is best. It seems fairly clear, too, that it is most effective on active Dups. Since I don't see evidence of my left hand having ACTIVE Dups. I am closely watching my left hand and if it begins to show symptoms of active Dupuytren's, I will get RT right away.

Increased cancer risk after RT is so negligible, but it still a risk at <2% after 25 years. The potential for stopping progression of Dups was so well worth the risk that I didn't think twice about it. As I said, I'll get RT again in a New York minute if I get active Dups again.

12/21/09 22:20
bstenman 
12/21/09 22:20
bstenman 
Re: Collagenase - where is it available?

Cancer risk from XRT to the fascia material of the hands is less of a concern than having X-rays of your mouth by your dentist every other year for decades. With your mouth the X-rays have a much greater chance of affecting organs than with exposure to hands or other extremities.

The collagenase treatment is truly experimental and does not have decades of use with thousands of patients as with XRT for Dupuytren's. The side effects are not being made available by the company manufacturing the substance or the medical people who have been conducting the trials. No news is probably bad news when such trials are conducting in the USA. The manufacturer needs to continue to raise money and would be eager to publish any results that put their product in a favorable light.

I doubt that any such treatment will be truly effective until it can accurately target the affected tissue and not enough is known about the mechanisms involved with the disease to know if even this is going to be a remedy or for what period of time before a relapse.

We in the USA are fortunate that at least the German government with its socialistic approach to medical care has funded the work of Dr. Seegenschmiedt and that socialist French doctors have pioneered the use of NA for Dupuytrens. Otherwise we would be completely dependent upon some blockbuster drug which is likely to be prohibitively expensive.

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interphalangeal   metacarpophalangeal   double-blind   injection   Patients   fingers   placebo-controlled   Contracture   participants   Collagenase   injections   available   treatment   1212&highlight=   surgery   Pharmaceuticals   Xiaflex   Collegenase   Dupuytren   clinical