Rheumatoid Nodules

[bighair]

My fingers are covered with Rheumatoid Nodules, some are the size of marbles and I also have small ball bearing sized nodules growing on top of the marble sized ones. My 2 index fingers no longer bend because of them. I had one surgically removed a few years ago but it had grown back bigger than ever and surgeon not keen to operate again because of risk of skin breaking down. I don't agree because my fingers don't bend so no pressure on the skin. I'd rather not take Hydroxychloroquine as a mean to reduce them as research not conclusive. Has anyone had successful removal or decent reduction in size of nodules from surgery or medication?

[Deejojo]

Oooooh u poor thing I do feel for u xxx

[helixhelix]

That looks uncomfortable! What medication are you on, and is yourdisease active at the moment? As maybe changing medication could help.

[Pam-51 in reply to helixhelix]

Hello,

In my experience the nodules are a sign that your disease is very active and that you require additional medication. Suggest you contact your Rheumatologist for an appointment to discuss your problems.

I have had surgical procedures to remove such nodules from my hands and elbows many years ago. They were quite painful particularly those on my hands as I frequently knocked them. The surgery was done by a specialist hand surgeon in Leeds who also replaced the joints in my right hand. Think you are unlucky that the nodules have recurred and I would recommend trying surgery again to improve the function of your hands. If necessary, you should seek a referral to a different hand surgeon for another opinion.

My disease is now better controlled by a multitude of drugs including steroids, methotrexate, rituximab and anti-inflammatories. No longer get the nodules. Don't know how old you are or how long you have had RA. I am now 65 and have had this dreadful disease for over 40 years. We are fortunate now to have effective drugs which was not the case when I was diagnosed and consequently I have many deformities.

You should not have to tolerate your current discomfort. Please be assertive and get the treatment you want. Get armed with as much information as you can and prepare your case before you see the specialists. We have to be proactive to ensure we get the best treatment available.

Best wishes.

Pam

[Karen77 in reply to Pam-51]

I read online that nodules can be surgically removed but often come back.

I am interested to know if your nodules have diminished/disappeared. I have hard bumps under my skin on most fingers, certainly nothing as bad as @bighair but I am concerned that they are not going away but seem to have increased in number. My rheumy told me that it could be due to MTX and they'd go away, but I have been that since Feb 2016. I'm currently on Arava and Humira, plus Meloxicam.

[Pam-51]

Dear Karen,

I had a number of nodules removed from my fingers and elbows at the same time as I had the joints replaced for the second time in my right hand. Some did recur on my fingers but are much smaller and not painful as my disease is less active at the moment. Have not heard that they can be caused by MXT, always thought they were a sign of active disease. Have had RA 44 years and been on MXT for 32 years but sure I had nodules before the MXT.

Best wishes Pam

[bighair]

I'm 55 and had RA 38 years. I am currently taking Cimzia and I think that has probably contributed to nodules development. I'm reluctant to change meds as keeping quite well. I had a major flare up 6 years ago and that's when nodules really started but some have developed over last year or 2 when I've been well. I will ask GP to refer me to hand surgeon again. Thank you for all the good comments. This forum is good now I know it is here I will use it.

[Hidden]

Oh my, how painful they must be. Please keep us updated on what your GP & hand surgeon says.