Right so everyone it is time for another patient interview again I have contacted this person using the Dupuytren's online forum. I contacted this person because they have been using verapamil gel. For those who don't know what this is I recommend you visit the PDlabs website but it is a gel that you apply to the the disease areas and it helps to stop progression and maybe reduce nodules. I may do a treatments post on this to explain further but from the PDlabs website HERE it says that it is a calcium channel blocker and calcium is required for the production of collagen.
Anyway thanks to Patricd for agreeing to do this and providing the answers below.
1) Do you have Ledderhose Disease, Dupuytren’s disease or both?
I have both Ledderhose and Dupuytren's as well as knuckle pads to boot!
2) Do you have a family history of the disease? If yes how prevalent is it?
Yes my father, and his brother have it in their palms but no contracture, just lots of webbing and cording.
3) How long have you been symptomatic?
I have been symptomatic for 1 1/2 years.
4) What treatments have you received?
I have just had transdermal verapamil gel as I do not yet have a contracture of the fingers (but a cord can be felt).
5) How successful were these treatments?
The Verapamil lotion eliminated the night pain in my feet and softened the tumors in my feet. Can't say it did much to the knuckel pads or the cords in my palms.
6) You said you had verapamil treatment, what was this experience like?
It is just a case of applying the gel and costs $69 per 1 1/2 month supply made by a compounding pharmacy at 10% concentration cream.
7) Are you currently satisfied with the treatment that you have received?
Yes it has worked better on my feet than hands. No other treatment is available except Xiaflex but it is not FDA approved for knuckle pads or plantar fibromitosis.
Summary:
So as you can see the results for this are average. I have not seen any data that suggests that this works properly and in fact if you look on the Dupuytren's Society page it is shown as only have anecdotal evidence for it. Clearly the person above has had good results on their feet and the prices that they have it for are not too bad compared to some of the other more proven options.
As I said I hope to do a treatments page on this and see what evidence I can find for it working and maybe seen if I can find the exact science behind why it works. Hope you enjoyed the interview and thanks again to Patricd.
Is the gel available in the uk? Do you just buy it or need a private prescription?
ReplyDeleteAs far as I am aware it is not available in the UK and as I said it is unproven, though I have heard of people requiring a prescription which I think would be hard to obtain in the UK given he lack of evidence that it works.
ReplyDeleteHi are you using the cream or gel ? Also, what amount do you use on your foot each time? thanks for answering
ReplyDeleteAs the interviewer I can only say I don't know but I will ask the guy I interviewed.
DeleteAlso people from the UK please ignored my previous comment as I now believe that this is obtainable in the UK, ask me if you want me to try and find out for sure.