My husband has CVID and is recently experiencing severe joint problems. His knee has been swollen for weeks. The knee is drained and keeps re-swelling. His right shoulder is experiencing adhesive capsulitis. His right hand has tendonitis. This is not your typical fibromyalgia pain (which he also has). He is having problems walking. Has anyone else had such a problem with CVID? I welcome any input on this matter.



Post Edited (20-09-05 05:09)

Im not sure how related it is to CVID or just a product of the abuse of athletics throughout my life but i have been expereincing some knee problems and swelling as well as some elbow and shoulder problems. It sounds like your husband's situation is much more intense than mine but thought i would chime in.

Andy

When I was a child I had JRA Juvenile Rheumatoid Arthritis which caused a lot of joint problems in the knees and ankels, when I went threw purbity it went away and no Dr could figure out why. Three years ago I was told that it was probally the first problem symptoms I had had of the CVID. You might want to look into or ask about the Arthritis factor?

Have they tried treating him with antibiotics? I have many times had the experience of thinking I was getting very bad arthritis in anything I ever broke or injured, only to have the pain go away when I was given antibiotics for something unrelated. I've done a lot of research on RA and there are many who think it's actually a mycoplasma infection - mycoplasma seems able to hide in small places and is not easy to detect in the ways other kinds of bacteria. Considering the immune deficiency, some sort of infection in the joint seems the most likely cause.

My 9 1/2 year old with CVID also has joint pains at times. His tend to be right after his IVIG treatments or at the end of this 3 weeks before his next treatment. We have been told it is related.

I have had CVID for 10 years and recieving IVIg for 7. 7 years ago I had an outbreak of rheumation arthritis. As a result of all the blood work they accidentally found the CVID. They say they are nor related but I am not convinced.

Uh, yes RA is so related to CVID. Time to educate the doctor. People with CVID are statistically more likely to get RA, and more likely to have relatives with RA. (My mom has RA.) And I've had unexplainable back pain for years, which always gets worse when I'm ill. I think it's arthritis--worse first thing in the morning and last thing at night. It started about the same time my CVID started.

The gamma globulin treatments have helped greatly--no more "itises." I do, however, have painful joints--feels like I am bruised inside--knuckles and shoulders are worst of all.

I have had paiful joints for a long time, mostly my hips and fingers, long before the CVID diagnosis. Mine seem to be worse after my treatment for a couple of days, I get achy like the flu in my joints.
Jo

From what I understand, autoimmune ailments (including RA) and CVID are known co-conspirators. It is my autoimmune problems that tipped off my docs to my immune deficiencies in the first place. My joint problems were thought to be due to psoriatic arthritis so I'm on Enbrel which is working great for the psoriasis. But I started Subcutaneous Ig 4 mos ago and my joints have been getting worse. I am hoping my worsening arthritis is temporary. Since being on IgG, I have battled 2 cases of pneumonia (one started prior to getting the IgG), but I actually put up a fight to the last one. For the first time in years, my fever went up to over 100.00 during a bout with pneumonia. All that fighting, however, alerted my immune system and it did what it always does, it attacked my joints. It really hasn't shut down since, but I'm trying to get through it with the Enbrel and Aleve.

Although my experiences with arthritis are different than those of you who've responded to this post, we all seem to have an inflammatory component to this problem. I hope all of you get to feeling much better!

Donna

I was having similar joint pain and my immunologist in charge of my IVIG had no answer. I went to a rheumatologist and bloodwork showed CRP inflammatory factor of 96 (0-4.6 is normal), but negative for RA, and was put on prednisone.Found another immunologist thru the Jeffery Modell Foundation website and she KNOWS PID.She explained I do not produce the antibodies for the RA test, so it is always negative, and there is a hard to kill bacteria associated with CVID. She put me on 3 series of Zithromax, and CRP dropped to 3, joint pain and swelling gone.Try the JMF website for a Doctor , because this is only 1 problem she helped me with when other Dr.had no clue.