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For those of you who have developed severe hand deformities, had you been on medication, was it detected late?

A myRAteam Member asked a question 💭
Greenville, PA
January 10
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myRAteam

Have you developed severe hand deformities despite being on medication, or was your RA detected late?

Hand deformities in RA can develop when inflammation isn't well-controlled over time. The inflammation attacks the synovium (joint lining), creating thick tissue called pannus that releases chemicals breaking down Show Full Answer

Have you developed severe hand deformities despite being on medication, or was your RA detected late?

Hand deformities in RA can develop when inflammation isn't well-controlled over time. The inflammation attacks the synovium (joint lining), creating thick tissue called pannus that releases chemicals breaking down cartilage and bone, leading to erosions and joint damage.

Factors that may contribute to deformities:

- Late diagnosis - It can take years to get properly diagnosed, allowing joint damage to progress untreated
- Inadequate disease control - Even with medication, if inflammation isn't well-managed, deformities can still develop
- Disease severity - Some people have more aggressive RA that's harder to control

Prevention is key:

Disease-modifying antirheumatic drugs (DMARDs), biologics, and targeted synthetic DMARDs can slow or stop disease progression when started early. These medications work by reducing inflammation at its source to prevent further joint damage.

If you're experiencing hand deformities, talk with your rheumatologist about adjusting your treatment plan. Occupational therapy, splints, and hand exercises can also help manage symptoms and slow progression. In severe cases, surgery may help restore some function.

A myRAteam member shared their experience: "I wish I'd been more in tune with my body when it all started."

January 10
A myRAteam Member

Diane,
When I was participating in clinical trials, due to not finding a med that would work. Once we did, it was to late. I do think that typing for hours on end, for over 60 years did not help either. I have done PT, OT, HT, splints, etc., nothing seemed to slow it down. I was blessed to have access to many who had decided to have surgery and those who chose not too.
Since I have a very high pain threshold, I decided against surgery. It is an individual decision.
I hope this helps.
Dinah

January 12 (edited)
A myRAteam Member

You're not alone. There are many of us out here who understand your pain and frustration. I'm praying tomorrow will be a better day for you.

January 12
A myRAteam Member

I have hand deformities but not severe yet. I would say moderate. I learned that I have a ruptured tendon in my left thumb and my middle finger is deviating towards the left almost causing an over lap but not quite. This is due to the synovial fluids being so buildup in my knuckles.
My right thumb is always swollen but I don’t have any problems with the fingers yet except pain.
I truly believe my RA was not caught and missed diagnosis probably for many years. I believe I have had this diagnosis and it never showed in my blood until 2 years ago. Which I learned is Seronegative RA. I am not able to take DMARD medication bc I get very ill. I see the doctor in 2 weeks. I think I am going to be put on a biologic medication. I also have psoriasis so I think I may Psoriatic arthritis so I am unsure what to expect. I am noticing that my hands are getting rather weak. I work full time and have to type. Which I believe is therapeutic for me. I use compression gloves to keep my hands warm. I was able to find them on Amazon for a decent price. They really do help. Honestly, I believe if this was caught and treated years ago I wouldn’t have the problems. And no one can tell me why which is frustrating but I try to think positive because I have too. I can’t let this disease win. I am going to work as long as I can. It’s nice to talk to people about how you feel. I often feel very alone in my battle. I am scared of what the future brings bc of my hands. And this really bring me down. I hope you find relief. Hang in there!

January 12

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