Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I have CVID - my IgG level is low so I am on plasma injections to pump it up. My journey started with joint pain, which in 3 years is at an all time high! I am in lots pain, very symmetrical. Weather changes kill me. My condition means I don't make antibodies properly - including sometimes the markers for autoimmune diseases. My doc is convinced (as am I) that there is some autoimmune thing going....my symptoms are classic RA with the exception of positive blood work and swelling. I get very minimal swelling - but I do get the redness over some joints.
Anyway, I am awaiting an appointment with an internist...my next step. Xrays look fine but the pain is huge. Voltaren (diclofenac) is almost useless. Anyone out there in the same boat ?
IMHO, I have seronegative RA...certiainly fits. Unfortunately, I am not sure what that will mean. Autoimmune drugs depress the immune system, my plasma injections pump it up (I've had 3 pneumonias in 3 years). Other symptoms include huge fatigue, brain fog, dry eyes, some hoarseness, some tendon & muscle pain, stiffness, bad sleeps....etc.!
Anyway, I am awaiting an appointment with an internist...my next step. Xrays look fine but the pain is huge. Voltaren (diclofenac) is almost useless. Anyone out there in the same boat ?
IMHO, I have seronegative RA...certiainly fits. Unfortunately, I am not sure what that will mean. Autoimmune drugs depress the immune system, my plasma injections pump it up (I've had 3 pneumonias in 3 years). Other symptoms include huge fatigue, brain fog, dry eyes, some hoarseness, some tendon & muscle pain, stiffness, bad sleeps....etc.!
The immune system is large and complex. I see you are in Canada. Do you have access to anything like the Mayo Clinic in the states, where specialists will work together to try to find solutions? There probably isn't any one individual who knows enough about both CVID and RA to treat both, and to know how the problems with one affect the other.
I thought a one time that I would be in your shoes but I'm not quite yet. My IgG level came back low so my Rheumy drew subsets. Out of the subsets, only my IgG was below normal. But, it deserves watching for me as my IgE, IgA, and IgM subsets were all within 10% of being below normal.
There is a very large crossover of people with CVID having one or more autoimmune diseases. So, in addition to an Immunologist and Hemetologist, perhaps you might want to add a Rheumatologist to the mix to help with the possibility of an auto-immune diagnosis.
Just in case you were not aware, there is a CVID board on Daily Strength as well as this board.
In addition, another resource on the Internet is the 'Immune Deficiency Foundation.' They will send free booklets and pamphlets for PID or CVID if you request it.
I wish you only the best.
Take care,
TheWino