I am facing a decision now about surgical debridement and nail removal. Horrible ulcers on three fingertips. On nifedipine and recently started 20 mg sildenafil twice daily but no results yet. Iron absorption and ferritin very low. Just finished iron infusions. Iloprost infusions not available in US. Had digital sympathectomy on both hands 6 years ago which was very successful for the ulcers at the time. My rheumatologist does not support surgical debridement because he worries about healing.
Anybody want to share their experience with debridement of ulcers?
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K9rsqr
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I guess that if you have only recently started the Sildenafil he wants to give that chance to work. My understanding is that it can take time, up to 6 months in some people. I also think there is still some room for increasing your dose. So I suspect he wants to try everything and that surgery is very much a last resort. I have had minor surgery to remove calcinosis in the past and it took forever to heal and I would only do it again in an absolute emergency. The problems with ulcers are even greater because they will have to take things back a long way to find viable tissue. And ulcers already show that your tissue is not able to heal well.Such a hard decision for you and such a horrible position to find yourself in. Are there any specialist centres in the US who would have any other opinions or would be licensed for other treatments?
Hi K9rsqr,I am so sorry to read of your predicament.
I have Raynaulds in my hands and have been taking Nifedipe 10mg 3xdaily for 7yrs. Although I only get small ulcers on my fingers they do disappear after a while.
I agree with your Rheumatologist as if your having problems with the healing process it could make it worse and how would they heal afterwards. I know you said you've had an iron infusion but have you had blood tests for vitamin difficancies i.e B12?
The only thing that I can think might help is an aqueous cream and cotton gloves put on before you go to bed and keep them as dry as possible, wear cotton gloves under rubber gloves for washing up and cleaning.
When your hands are wet, use a hair dryer to dry them as much as possible as towels will make it worse. It's what I do when I notice my fingers getting small ulcers.
I do get digital ulcers as well, but I have never seen any as bad as yours.
I do consider Sildenafil my wonder drug which normally helps me within a few days of upping my dose. I am constantly on them, but can vary between 0-6 tablets per day for my 25mg dose.
Maybe ask your rheumatologist about it. 40mg daily is not a lot. I take up to 150mg if my fingertips are really bad and don't heal. And I do definitely notice a difference with the increased dose, but don't have any side effects that I know of (I know some people don't get on with it so well)
Good news! After my hand surgeon changed the type of dressing being used on my fingers, the ulcers have improved. Of course, the steroids also helped. Surgery has been postponed to see if the improvement continues.
In the meantime, I managed to get an appointment with a rheumatologist at the Cleveland Clinic in Weston, FL for a second opinion. This location was recently named a Scleroderma Center of Excellence so I am hopeful.
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