Hi:

I was diagnosed with CVID last year (Oct 2007-age 52). Lately, I have been getting pain in my ankle, wrist, and lower back. A MRI of the ankle showed that it was inflamed all over along with some damage to tissues. The ORTHOPEDIC doctor is at a lost as to how it should be treated. He can't inject because the whole ankle is involved and cortisone would also cause more damage. He says that something is attacking my joints systemically and causing premature wear/deterioration. A mylegram of the back is next and from there he will send me to a rhuematologist.
Meanwhile, the immunologist that took over for the one I 1st saw says that this is probably not CVID related! Many articles on the NET contradicts this.

My background: I am a father of 7 and am married (24 years!) I had battled cancer successfully twice-the 1st time it was 2 cancers unrelated and then one of them returned a year later. I am 3 years out. After getting several 'childhood type' infections last summer, I sought an immunologist. After some expensive blood tests, the diagnosis was made. I did 6 months of VIVAGLOBIN and the IMG came up so the new (to me) immunologist took me off from it, even though the T-cells are deficient and risk of certain infections remain.

Needless to say, I deal with multiple medical issues every day as a result of cancer treatments and now joint pain possibly from CVID.

Any help/advice will be appreciated.

Thank you

Hi! I am 49 years old, diagnosed with CVID in September 2007. I've had IVIG treatments monthly since the diagnosis and although I'm feeling much better and haven't gotten sick with pneumonia, sinus infections, colds, etc., I have major joint pain in my back and ankles and knees. I had a bone density test that showed my bones were very good and it was suggested that this was possibly related to the soft tissues in those areas. That makes sense to me as my ankles especially always feel weak, but it has worsened since my diagnosis. I have no answers for you other than to say that you are not alone. I need to further investigate this myself. Good luck in your investigation too!

Thanks. The ankle MRI showed that soft tissue indeed was involved. It may take 2 months to get to see a rhuematologist as they are very specialized and busy. I hope I don't like like the scarecrow in the Wizard of Oz (with straw removed) by then :-)

My granddaughter, age 13, has CVID. She also has joint pain and was just diagnosed with Hyper Mobility Muscle Syndrome and Hyper Mobility Nerve Syndrome. Have your rheumatologist check you for his also.

UPDATE:

I saw a rheumatologist and he analyzed all of the data. (MRI, mylegram, x-rays, etc.) . He is 99% sure that I have degenerative arthritis. This is not as bad as rheumatoid but there is no cure and it seems to be in several joints as well as my lower spinal discs. He believes there is no correlation with CVID. It is due to a combination of aging and possibly cancer treatments. The best they can do is pain management as along with physical therapy to strengthen surrounding ligaments.

Many thanks to all who have posted to this thread.

MAZMAN

Wishing you the best. Shelbie also has arthritis with her CVID and everything else she has wrong with her body. She also has brittle bones and right now has her third broken ankle.

I was diagnosed with CVID when I was 4, and am now 48. During the last 4 years, I have had tremendous ankle, knee and lower back pain. I am quite certain that it is from CVID, as I get some relief after being infused. I get infused twice a month, or every other week at 30 MG's.

I got a TENS unit today to try to see if that would work on my lower back, which is the worst. I have had limited success thus far, but am hopeful. I also take daily, every 4 hour doses of Ultracet's to curb the pain. These are 5/325 dose pills and I take 2 every 4 hours. When these don't cut the pain, I have a limited supply of Oxycodones. These are highly addictive, so I am extremely careful with them and only take them when I am at my worst.

I am no longer able to work, as the pain is quite debilitating, and even with the IVIG, I am still getting extremely serious infections that last for months. In other words, I am getting worse. However, you may want to talk to your doc about a TENS or some stronger pain killers.

Why are you "Quite certain" your pain is from CVID? Have you seen a Rhumatoligist? Have you explored all of the other posibilities for your pain?