Scleroderma - hand surgery

[Kc_1411]

Hey all hope u r well....

has anyone had hand surgery to stop the claw affect or which treatment has worked for u???

[Supaflydan]

My hands are clawed so so sick if it. Noting is helping at the minute. I noticed as soon as I came off methotrexate my hands literally clawed within days. Might ask to try going back on it to see if it helps.

[Kc_1411 in reply to Supaflydan]

Thanks my husband was on methotrexate many years ago and he stopped since his scleroderma has just completely taken over his hands are so clawed and white patches are a lot worse (his is brown complexion) I previously went to his last appointment with him to try and convince him that there is some hope. But his consultant offered nothing feel so sorry for him surely there must be something that can help It just feels as though the docs don't want to push for surgery. I hear of many things in America but U.K. Is very different. I may have to beg him to try methotrexate again it's now been 5 years he's been off it ( his reason for stopping to me was the long term effect on organs)

How long have u been with scleroderma?

[Supaflydan in reply to Kc_1411]

I was diagnosed 3/4 years ago I have lung involvement but it seems to be stable at the minute. My fatigue and pain is stable at the minute after chemotherapy I found it helped me a lot, I’m currently trying mycophenolate to help soften the tissue and tendons in my hands, I’ve asked and asked about the way forward for my hands and I get the same response nothing they can really do. I think I’m just going to buy a vice and slowly crush my hands by straight that’s how desperate I feel!

[Kc_1411 in reply to Supaflydan]

So frustrating!!! I'm on a mission to find something fingers crossed I do thanks for being honest xx

[Supaflydan in reply to Kc_1411]

Hi for it! I’ve heard also wax baths are good but I doubt it works. If you find anything be sure to let me know!

[meders]

I had surgery on one of my fingers. It was almost touching my palm. It got fixed in a more natural position. Can only move it at the knuckle not on the joint but I can grasp things ok.

[Kc_1411 in reply to meders]

Thanks For letting me know, if u don't mind me asking did you request this treatment or was the finger causing you a lot of pain? Was the treatment in the uk?

Only asking because when speaking to my o/h consultant there not really interested in offering any treatment/surgery

Thank u

[meders in reply to Kc_1411]

The finger wasn’t causing any pain but it was restricting what I could do with that hand. I was referred by my consultant to see a plastic surgeon. And it went from there. The surgery was in the uk. I’m under the care of Chapel Allerton Hospital.

Hope this helps.

[Kc_1411 in reply to meders]

Thank u it really does

[LucyJean]

Hello there, hand surgery is always one of the many options for managing hand function, and if they thought that you would benefit from doing it I am sure they would. Usually an orthopaedic hand specialist or a plastic surgeon would be the ones involved and making a decision about whether surgery was possible and beneficial. In addition they and your Rheumatologist will be making decisions about your overall health, your ability to heal afterwards, the state of the tissues in your hands, the degree of disability, your medications and disease control. It is never as simple as just yes or no, there are many complicated factors that they are considering.

Lucy xx

[Kc_1411 in reply to LucyJean]

Thanks Lucy I guess it's just difficult to accept that there are no more options left

[Supaflydan]

Yeah I understand now if my fingers were really really bad and almost stuck to the palm then that’s when the surgery would be carried out. If I went into surgery now then it probally wouldn’t make a difference as they arnt curled up as close to my palm. They are badly disabled but probally at the point where meders (guy above) fingers have been put back to. I’m glad your fingers are a lot better and your coping.

[bluesgirl]

Clawed fingers are one of the most upsetting things Scleroderma has given me. My hands look awful and l can often see people looking at them with interes but it’s the lack of mobility in them that is frustrating. I can’t hold a glass, use a knife and fork properly and am constantly dropping things. Scleroderma doctors don’t seem to realise this problem is as important to us as managing internal problems. I have been offered surgery to straighten a couple of fingers but have been advised l am just replacing one problem for another as fingers will remain in a straight position with just some movement from knuckle joint. If anyone knows of any other orthopaedic procedures or have had the surgery and it helped please post.