Ulna drift: Hello I have had rheumatoid for 25 yrs and... - NRAS

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Ulna drift

Mishelno64 profile image
14 Replies

Hello I have had rheumatoid for 25 yrs and developed ulna drift of 3 fingers basically it happened very suddenly I felt a pop then noticed it. I saw the surgeon and went to therapy for a short time and had some splints made which I can wear at night but I feel it makes my pain worse at times I have a lot of pain anywhere from then palm of my hand all the way down my fingers and now some in my wrist I have a hard time writing grabbing and holding on to things. This is very luge altering to me and very frustrated the doc is watching me and changes his mind in what he wants to do the last visit he said I would most likely need 2 knuckles replaced and a tendon rebalanced of 2 or 3 fingers . I am 50 yrs old have been on remicade for 13 yrs so they are actually shocked that I developed this . Any input on this would he helpful especially had anyone had surgery for this .

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14 Replies
Tinwoman2 profile image
Tinwoman2

Hi Mishelno64, yes, I have had 6 MCP knuckles replaced. It restored function & took away most of the pain, but the swelling has never really gone down. The 2 joints on my left hand didn't 'take', (so they still go off in another direction) and I broke one of the others on my other hand-somehow. It really hurt when that happened for about 2 months & was really swollen, but the pain went away & I haven't had it fixed & don't feel the need to now.

I have to admit, I did it mainly because of how my hands looked, but I am still glad that I got the replacement joints because the procedure took a lot of the pain in my hands away. They still get 'stiff' in wet & cold weather but they really don't hurt any more, for the most part.

Good luck with whatever you decide to do.

Christine

Mishelno64 profile image
Mishelno64 in reply toTinwoman2

Thank you for your reply. My doctor advised me not to do the surgery for cosmetic reasons which I wouldn't do anyway I would do it because it's like altering to me and painful. I hope you are doing better now. Thanks again

sean1151 profile image
sean1151

Hi, what you need to do is take control. First thing would be to contact your rheumatology helpline explaining your problems and firmly request to be referred to your local orthopaedic surgeon. If the surgeon isn't specialised in hand surgery he will refer you to someone who is.

Secondly request a medication reviw from your GP. If the medication you currently take is not offering pain relief try something new; same with anti-inflammatories.

You need to be proactive. Don't suffer and moan about it.

Mishelno64 profile image
Mishelno64 in reply tosean1151

Thank you for your reply. I have seen both my rheumatologist and my hand surgeon whic h o have seen every few months. I have been on remicade for 13 yrs f I can not take any anti inflammatory e's due to my stomach I have been given celebrate it doesn't really do much.::.my sure on is a special in and surgery he is just not jumping onto surgery because it is a big one there isn't much more to do at this point thank you a.

Tessthomy profile image
Tessthomy

Hi. So story to hear about your hand. I've had RA for about 12 years ish. About 4 years ago my right hand started to drift off to the right. I am a teacher of piano and I also own horses one of which I still ride most days. My hand is v noticeable ( to me) but have been told that no one else really notices it. It's really quite bad and my piano playing is somewhat now restricted because of it.

I too went to see a surgeon who said that surgery could be carried out for the look of it but said that I may lose the strength that I still have even though this is diminishing now. I have pain in both hands and wrists but generally it is managed well with embrel and sulphasalazine .. So far..

I still am determined to carry on my life with horses and persist with the piano regardless of the deformity. He did say that maybe at a later date (not sure when? As I cannot think of a time when I won't be able to see to my horses..)... I could go down the surgery route. Let us know what you decide. TT x

Hi mishel sorry to hear about you hands. It makes one wonder were you properly controlled on your meds at all to develop your ulnar deviation. I've been lucky, age 47 diagnosed 21 years but hands look pretty normal despite lots of problems with them over the years. Hope you get done better pain relief sorted and some good advice. Take care x

Mishelno64 profile image
Mishelno64 in reply to

Than k you for your reply. I have been on a high dose of Remicade every 8 weeks for 12 yrs and have been fine. It happened very suddenly I just felt a pop and then noticed the drifting I have seen my rheumatologist and the surgeon already and being followed by the surgeon every few months plus saw the therapist and had some splints made which gust more than help. . Will make a decision about surgery sometime. Thanks again take care

beeckey profile image
beeckey

hi i have had RA about 12 years had lots of surgery.I have been on infliximab 2 years can hardly move at the moment with right knee.In the last couple of weeks my pinkie and ring finger are like the joints are gone hard to explain but the knuckle on the little finger seems to have moved and it is facing upwards and does not bend had thumb fused in feb and both hands tilt in towards each other they just feel weird so i am falling apart at the moment hope you feel better soon

Mercedes profile image
Mercedes

I had this surgery in 2004. My pinky finger was at a 180 degree angle and the rest were following suit. It was done on my writing hand, and while my fingers are now straight, I lost a lot of strength in my hand. My fingers also do not lay flat to the palm on their own. The surgery was followed by months of physical therapy. I decided to get the surgery done because I kept hitting my fingers and was afraid I was going to break one. For me, I was able to function okay before surgery, so not sure if it was necessary at the time, but I felt that my fingers were in danger being that splayed out.

NeonkittyUK profile image
NeonkittyUK

Sorry to hear that Mishel. I haven't had surgery but maybe could benefit from it, but seeing my physio to ask this soon and my Rheumy. It isn't the bit most high up the list for replacement! I think too as after 20 years of RA I developed drift and deformity of some fingers whilst waiting to go on an Anti TNF and being left with no med which was working to protect me. Saw several of my fingers go mad over a short period of time. This was before I got on my current med which seems to have halted the other joint damage. Two fingers do hurt . .. which have a Boutonniere and Swan Neck deformity. I can type and write and do most things but difficult to pick small things up ... money etc and do little buttons and fastenings. I have had some awful comments from a woman about these fingers .. only two are really that noticeable .. she stood in front of me in a very public place recently and shouted .. ugh your hands are horrible. How can you go on like this? I said .. Don't you worry .. I do more than you do with these horrible hands. ;-) For cosmetic reasons I may think of having them operated on but never for anyone who says anything like that. To be honest she needs some happy injections and a personality implant! ;-) Hope you are stable/well at the moment with your RA. NK x

Mishelno64 profile image
Mishelno64 in reply toNeonkittyUK

Thank you for your reply. I get aggregated because I don't have the strength I use to I drop alot of things because of the age of my hand I can't do certain things like put a cup in my cup holder in my car etc. I have times where I have alot of pain the other day my wrist and my little finger and my knuckles of my first and second fingers hurt alot my baby finger almost felt dislocated whenever I moved it . It Hurt alot . I just don't know what they Consider this condition impacting your life enough to do the surgery.best of luck to you.

NeonkittyUK profile image
NeonkittyUK in reply toMishelno64

I understand entirely .. it is a constant battle to find ways and techniques of doing things which are easier. Reading others' experiences I would not go for surgery in my left hand (writing hand) as yet as it can still function/do many things. It is very true though that if the wrist has problems too then that makes things even harder. Both mine are fused to a certain restriction but I have managed to keep them semi mobile. They don't stop me from doing most things even though considered quite damaged, by my physio. Have you tried wax hand baths to alleviate the hand/knuckle/joint pain? It used to help me lot whether the RA had my hands inflamed/swollen or not. Lasted a good couple of days and calm down the pain. Good luck to you too Mishel and hope you can get what you want and need for your hands.

Metal-legs profile image
Metal-legs

I am really sorry to hear about your hand problems. I have just been looking at ulna drift photos on internet, I didn't realize it could suddenly happen, I thought it was something that happened gradually. It must be very unexpected as your R.A has been controlled on remicade. I haven't had knuckles replaced but I have had 3 tendons in my fingers re-aligned. I think it was called a lateral band re-alignment, and I needed it because I couldn't bend my fingers. I had months of hand therapy after the op and at first it was very successful but then I lost the bend in the fingers, due to too much joint damage. I wish you all the very best and hope there is a solution for you.

Mishelno64 profile image
Mishelno64 in reply toMetal-legs

Hello ,I am not sure if my Ulna drift was sudden due to i had fallen and broke my small finger it was bad needed surgery i had a ruptured volar plate, the bone broke away and the ligament followed i also had scarring of both tendons and also a swan neck deformity it was a long recovery and 8 weeks of therapy then a few months later i needed surgery for trigger finger in the same hand so not sure it it was a domino effect. When the drifting started i felt a weird opo in my hand and thats when it started my tendons have slipped in three of my fingers one finger forgets to bend at times like when i wash my hair, The doctor wants to wait a bit longer because i am on the verge of needing knuckle replacement so he wants to do the replacement and the rebalance at the same time ! Take care !

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