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Has Verapamil helped your DD?
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03/17/2010 23:45
snickers 
03/17/2010 23:45
snickers 
Has Verapamil helped your DD?

I told my story last year about how I feel CoQ10 kicked my Dupuytrens Disease into action http://www.dupuytren-online.info/Forum_E...rens-0_508.html.

Briefly, I started taking CoQ10 in Feb 2008, began showing signs of DD in July '08, was diagnosed with DD in Oct '08 and it really started progressing quickly through the Winter months. I stopped CoQ10 in March 2009 and actually saw my DD improving about a month after that.

I still firmly believe that CoQ10 was the catalyst to my DD as I had no signs of DD before taking CoQ10 and for a lot of the reasons I mentioned before. However, a few weeks ago I was reading an article on Verapamil which is a calcium channel blocker. The article talked about how Verapamil was being tested for use with DD. Coincidentally, I started taking Verapamil off label as a Migraine preventative in March '09, at the same time my DD started improving.

My DD has always been in the very early stages. After stopping the CoQ10 and starting the Verapamil, my DD reversed some and never bothered me. I stopped taking Verapamil in Sept '09. My DD started progressing shortly after this, but I didn't put everything together until I read the article on Verapamil.

After going back to my neurologist earlier this week, I just switched back to Verapamil. The last time, it took about a month before I saw any signs of improvement. I'm really curious if this drug helped my hand the last time and if it will help this time. I'll let you know how it works out for me.

Has anyone had any experience taking Verapamil? If so, did it have any affect on your DD?





Edited 03/18/10 01:45

03/18/2010 01:37
jocond 
03/18/2010 01:37
jocond 
Re: Has Verapamil helped your DD?

Snickers,

How exactly are you taking or using the Verapamil? Pill or topical?

Joe

03/18/2010 02:25
flojo 
03/18/2010 02:25
flojo 
Re: Has Verapamil helped your DD?

Have heard nothing about Verapamil. Please keep us posted! Also, please post website addresses so that we can all research it.

03/19/2010 01:31
snickers 
03/19/2010 01:31
snickers 
Re: Has Verapamil helped your DD?

Joe - I am taking Verapamil in pill form. I didn't take very high dose before and won't be able to take a high dosage this time either.


Flojo - I was looking around the Dupuytren Foundation website (which also has a link to this forum) and came across a tiny article in the Treatments section. Here is a link to the area http://www.dupuytrenfoundation.org/Helpful-Medications.

I went down to the Calcium Channel Blockers and clicked on one of the links (they're both the same) next to it. I didn't understand everything I read, but it put my taking Verapamil into the timeframe where my DD showed improvement. Here is a section of that article that intrigued me:

"In the second part of the study, prostaglandins E1 and E2 or the calcium blockers nifedipine and verapamil were tested for their ability to inhibit LPA-promoted contraction. It was found that both types of inhibitors partially block LPA-promoted contraction of Dupuytren's fibroblasts."


I am hoping to find at least the same improvement I had before so I can more definitely say it was the Verapamil that helped. I will let you know how works for me, but it will take a some time. Thank you!

02/02/2012 23:28
GaryBall 
02/02/2012 23:28
GaryBall 
Re: Has Verapamil helped your DD?

Hi snickers,


I m thinking of having a go with verapamil......what is the latest newsyour end???

Many thanks

Gazza



Joe - I am taking Verapamil in pill form. I didn't take very high dose before and won't be able to take a high dosage this time either.


Flojo - I was looking around the Dupuytren Foundation website (which also has a link to this forum) and came across a tiny article in the Treatments section. Here is a link to the area http://www.dupuytrenfoundation.org/Helpful-Medications.

I went down to the Calcium Channel Blockers and clicked on one of the links (they're both the same) next to it. I didn't understand everything I read, but it put my taking Verapamil into the timeframe where my DD showed improvement. Here is a section of that article that intrigued me:

"In the second part of the study, prostaglandins E1 and E2 or the calcium blockers nifedipine and verapamil were tested for their ability to inhibit LPA-promoted contraction. It was found that both types of inhibitors partially block LPA-promoted contraction of Dupuytren's fibroblasts."


I am hoping to find at least the same improvement I had before so I can more definitely say it was the Verapamil that helped. I will let you know how works for me, but it will take a some time. Thank you!

02/05/2012 23:02
snickers 
02/05/2012 23:02
snickers 
Re: Has Verapamil helped your DD?

Hi Gazza,

I am still taking Verapamil in a low dose and it still seems to be working pretty well for me. Once in a while I'll get that familiar itch or a little pain for a short period of time, but then it will eventually go away. I do want to let you know that my DD was never very progressed. I did have some nodules and a small cord with no contractions. This is all of my personal observances although I do swear it has helped me. If you do try it, I hope it helps you and wish you the best of luck.

02/06/2012 01:09
GaryBall 
02/06/2012 01:09
GaryBall 
Re: Has Verapamil helped your DD?

Hi snickers,

Thanks for the reply.....here s a good example how the forum can help people.....

My interest in this started with your post......I also suffer with migraines......have done for years.....of course most people report no benefits from verapamil..... But if it works for 1 in 100..... What the hell......

I ve spoken to my GP.....he's prescribed 120 mg a day......so I ll keep you in the loop as to how it goes in the next few months....

Once again thanks for the input.....

Cheers


Gazza

02/06/2012 02:09
Maddie 
02/06/2012 02:09
Maddie 
Re: Has Verapamil helped your DD?

This exchange on Verapamil is really interesting. I did a little research on the web and saw that it has also been used as a treatment for ME/CFS, which I have. And also migraines, as noted above. Since there is speculation that each of these conditions has links to vascular issues, I find this intriguing.

Two questions:

1) Does anyone else on this forum have ME/CFS or chronic migraines in addition to DD or Ledderhose? I now have been diagnosed with DD, ME/CFS, and frozen shoulder (the left one a few years ago, and the right one just recently). So I have been wondering a lot whether these conditions are linked in some way (I know about the link betiween DD and frozen shoulder). It seems logical to think they would be linked somehow -- either that or I am just unlucky or a genetic basket case! I should add that I am very health conscious, eat well, maintain a healthy weight, don't smoke or drink, etc.

2) There was a thread a few months ago on the Ledderhose forum about the use of transdermail verapamil, with some reporting success using it on their hands and/or feet. Do those of you who have been using it have any updates you can provide? I think I would feel more comfortable with a topical medication if it seemed to be effective, as I'm taking so many oral meds already.

I also realize that some have said Verapamil didn't help them at all, so I am especially interested in hearing more reports.

Thanks for your help!!

Maddie

02/07/2012 02:15
megB 
02/07/2012 02:15
megB 
Re: Has Verapamil helped your DD?

In Dec 2011, I tried a compounding pharmacy Rx of 15% Verapamil, with Ketoprofen(for pain) and a substance to transmit it through the tissues (not DMSO). My MD wrote the Rx to match the % Verapamil used in the PD Labs (Texas) copyrighted compound. $65 out of pocket for a months supply
I would have preferred that it had been mixed with DMSO and that the Verapamil was a higher %. For only one month's use it's hard to say if anything positive was happening. It was very slow absorbing and sticky . Cotton gloves didn't help. It did help slightly with the aching in hands and feet. As for reducing nodule size or hardness - I would say unsuccessful in my case. Still progessing with cords to PIP in 6 of 10 fingers.

Don't forego trying this though, maybe with a higher % Verapamil, DMSO and applying more than once a day. As we know, everyone's DD and LD is different... I'm not sorry I gave it a try and may try again. Right now focusing on getting to Germany and Prof S. for RT. Since I couldn't be sure it was helping, I had to decide to keep it up or go for RT while DD is still active. Really difficult decisions this disease puts us through.

megB

Edited 02/07/12 04:29

02/07/2012 02:44
cureall 
02/07/2012 02:44
cureall 
Re: Has Verapamil helped your DD?

my experience with transdermal verapamil. 10% in the cream applied twice daily for one month and I thought I was seeing some improvement. I stopped using it because the doctor refused to refill my subscription so I had to wait a few weeks to get a new sub and dang if the dupuytrens seems a little worse now. It could just be coincidental, of course, but I'm going back on the trans. verap. consistently and see what happens. Perhaps just the act of massaging the nodules night after night may have some slight benefit...It's hard to know...Just hate the idea of flying all the way to Germany TWICE for this...and yet I tried a local rt doctor and they seemed so disorganized...that's my frustrating experience. This is no fun...

cureall

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