severe digital ulcers
Posted 10 April 2008 - 03:30 PM
Posted 10 April 2008 - 03:42 PM
So glad you have found us but so sorry it is because your wife is in such pain. What a wonderful husband you are to come here and ask for help for her.
I am surprised that she hasn't had any sucess with Viagra. I know that a lot of people have. Is it possible to change the dose?
I also use nirto cream and it does help a bit. Also want to mention that caffeine is a no-no for those with Raynaud's as it constricts the tiny capillaries. Same goes for smoking but if she has been battling Raynaud's for so long, you both probably already know that.
Since your wife is not happy with her doctors is it possible for her to get a second opinion from another doctor?
I'm sure others will chime in with some words of wisdom. Welcome to the forums hopefully your wife can visit us too.
Posted 10 April 2008 - 04:30 PM
I'm sorry to read about the problems your wife is having with Raynaud's. Like Barefut, I'm surprised that Viagra didn't help, but then we all are different. Norvasc didn't work for me whereas it has worked well for others. We do have a page on Raynaud's treatments. So please click on the link: Raynauds Treatments. You might find something there that would help her. I started taking Bosentan (Tracleer) 1.5 years ago for PH. It has had a wonderful side effect of decreasing my Raynaud's episodes and the severity of them. My fingers use to go ghost white and hurt. Now they just turn purple and tingle. It's a very expensive drug and can cause liver damage so I have to get my liver enzymes checked every month. So far so good.
Of course - if at all possible, it's important to prevent the episodes from occurring in the first place. We have a page on prevention, rewarming, and tips from patients that you both might want to peruse. Of course as you already know, prevention is easier said than done.
I hope you find something that works. It's wonderful that you are so supportive and helpful. I have a wonderful husband as well and couldn't have made it this far without him.
Big Hugs to you both,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 10 April 2008 - 04:35 PM
Thank you for replying so fast, please refer me to as chico78 as my wife is chica78. Yes she has tried 50mg and 25mg a day but tends to get her light headed and week throughout the day. Her last doctor visit this past Wednesday the doctor recommended to cut back the viagra until she starts feeling better. Also he prescribe cozaar 25mg daily and to watch her blood pressure, if that is tolerable then to alternate the viagra and the cozaar. T
oday was the first day she used cozaar, she has been feeling week the whole day but her blood pressure has been good. By the way I forgot to mention chica has renal failure and currently on peritineal dialysis which at time drys her out and lowers her blood pressure.
She has several doctors in the Wichita Kansas area and one scleroderma doctor in Houston, which she has not seen this year. I appreciate all the great info on the site and all the caring people that are here. Hopefully next time she writes to you herself knowing how nice and friendly everyone is.
Posted 10 April 2008 - 08:19 PM
If your wife's finger tip has turned black, my guess is that it's gangrene. You say you have a sclero specialist in Houston and that you haven't seen him or her this year. I would advise you to call this specialist right away for advice, if not a visit. Would this be Dr. Mayes?
I'm not a doctor, but I believe gangrene is dead cells. I hope your wife can continue taking viagra or cialis to get the blood to the finger tips and perhaps, stop the problem from spreading further, but I'm thinking it can't "fix" the cells that already have died. Someone who really knows this disease should look at her finger right away!
I had gangrene on the end of my left index finger. It was the most painful thing I ever endured and part of the end formed a black cap which eventually fell off. No one was using viagra at that time, but, later, when another ulcer starting forming on my other hand, my doctor put me on Viagra and that ulcer healed right up and I have never again had a bad ulcer like that first one again. But I had several doctors treating me that first time who really didn't know about sclero. Fortunately, I had a couple who did.
The first doctor who was able to help me was a pain management specialist. As soon as he saw my finger, he booked me immediately for a procedure called a ganglion block. Within an hour, I was anesthetized and he put a needle in my neck and I really don't remember the details or what that did. I think it was supposed to force blood into the finger tips of that left hand. Later, I had that done again and then for a time I actually wore a sling and had a bottle of something dripping into me. The healing slowly began after that first block.
I had that thing for almost a year before it healed. I lost part of the end, but it's even grown a little nail back! It's an odd little nail, but I like it!
Tell your wife not to give up. I sure know how she's feeling, though, because there were times that I just thought I couldn't go on. The pain was never-ending until I got to the pain management guy. He was an M.D. with a specialty in anesthesia.
I had been put on several strong pain medicines which didn't help at all! He switched my medicine to something really strong and, from them on, I had good pain relief. Please call your specialist in Houston right away. If nothing else, maybe she can refer you to a good pain management specialist in your area.
Keep us posted on your progress. I'll be thinking about your wife and you. You are a good husband to be standing by and trying to help your wife. My husband was wonderful to me during that awful time, and I can tell you that I appreciated it and won't ever forget it!
Mary in Texas
Posted 10 April 2008 - 10:20 PM
Hi Chico, I agree with Mary, if the doctors are not aware of or have not seen the back area on your wife's finger, you should contact someone ASAP. She might need some more powerful intravenous medication to prevent it form getting worse. Regarding medication for Raynuads, I have quite severe Raynauds and have tried several different drugs with little effect but have recently started taking Losartan ( I think it may be called Cozaar in the US?) and it has made a big difference.
Posted 12 April 2008 - 03:25 AM
I don't have any words of wisdom on this particular problem...but you are definitely in the right place to find some solutions! I wanted to welcome you both and wish you good luck in finding the right doctor to help your wife.
Posted 12 April 2008 - 04:56 PM
I've been having pain in my pinky toe and the toenail is turning dark. Of course I'm now woried about gangrene since I've learned so much about it from you and Karen.
I suppose I should have it looked at....
Posted 12 April 2008 - 05:05 PM
If I think something might ought to be looked at, I have it looked at! You can't be too careful with those fingers and toes.
Mary in Texas
Posted 13 April 2008 - 06:47 AM
I have a couple of ulcers almost every year, but a couple of years ago I had an extremely severe one on my right ring finger. It had gangrene on the tip and they were talking amputation, I went to the wound clinic at the hospital every week. Digital ulcers are the most painful thing I've ever experienced. My doctor decided on hyperbaric oxygen therapy, I had to go everyday for 22 days. It is expensive, but my insurance did cover most of it and my finger healed. My fingers on my right hand are shorter than the ones on my left, but that's okay, I'm just thankful for having all of them. It is worth checking into if it is turning black. I have recently tarted revatio for my ulcers, seems to be working great. Good Luck!