|gareth||-- 10-04-2006 @ 2:43 PM|
I am a patient with CVID, and have had since I was 10, I am now 28. I was reading differnt discussion threads on info4pi.org today, and noticed the amount of people that painfull or stiff joints. I recently began getting this problem, and actually have lost most of my cartlidge in my right knee, pain is incredible. My own research, reasearch by physicans and my own experience has led me to believe the joint problems are related to CVID. Last week my left knee went very fast (previously no problem), to be on par with my right knee.The pain was so incredible, a affecting my quality of life, it was clear life had changed once again, and I needed to start making plans for a different job, intensive physical therapy
Funny thing happened on Monday went for my IVIG treatment and the problems with joints have dramatically cleared up, if I was to put a number on it at least a 75% improvement. I don't think I'm getting enough IVIG and their is infection in my knees, called mycoplasma, and thus causes arthritic joints!
Please reply to this posts if you have these same problems, as I need to convince my Dr, joint pain and CVID are linked.
|Diane||-- 11-04-2006 @ 7:37 PM|
Joint pain is well documented in CVID:
(journal)THE LANCET vol337: Feb2,1991; article PRIMARY ANTIBODY DEFICIENCY IN ADULTS by G.P. Spickett, S.A. Misbah, H.M. Chapel see the table on page 282
You can also get a patient handbook from IDF(Immune Deficiency Foundation) firstname.lastname@example.org On pg. 17
it discusses joint pain and CVID.
Just so you know, joint pain can be from not receiving enough IVIG, infection (commonly Mycoplasma, Staphylococcus aureus, or Ureaplasma),or autoimmune disorder.
|Veronica||-- 02-05-2012 @ 4:53 PM|
Hi, I am 52 and just diagnosed w/ CVID. Also very bad joint pain which comes and goes, sometimes related to my taking antibiotics for sinus infections. I was told by my MDs that I cannot have joint infections as they are not swollen, warm or red. The literature I have read on the subject mentions arthritis-like pain, but no swelling, redness or warmth. It can be caused by mycoplasma, I just googled "joint pain and CVID" and read up on a couple of sites. "Mycoplasma infection is the commonest cause of arthritis and deep abcesses in CVID; those patients with low levels of mannose binding lectin (MBL) are particularly susceptible (Hamvas et al - unpublished). These patients need to be treated for at least 8 weeks with appropriate antibiotics. There are very few laboratories in the world able to culture mycoplasmas and perform antibiotic sensitivity studies, and it is useful to ask for help from a specialist centre before embarking on a long period of treatment. Combinat- ions of clindamycin and doxycycline are often effective, although a new experimental drug, Econor, has been impressive.37" This is a direct quote from an article; here is the title: "Clinical and Immunological Spectrum of Common Variable Immunodeficiency (CVID)" hope this helps...
|graceinGod||-- 04-06-2012 @ 12:25 AM|
Hi, I developed CVID when I was a very young child. At that time, it was not known as a disease..I am now 49 years old. I have a twin sister who also has it and many female family members with other immune diseases. In the last few month, I began experiencing severe joint pain along with severe pain in my upper body...shoulders, collar bones, arms, wrists, hands, as well as legs and knees, ect. I do have spinal issues and fibromyalgia and neuropathy, but this pain was new and severe and has lasted longer than any other time I've experienced pain this severe. I have been experiencing other symptoms along with it that have left me lying on my couch for most of those few months. Any time I attempt to exert myself, I pay a high price physically and all of it has affected me mentally and emotionally, which I already fight with having bipolar and PTSD with related issues. Trying to get any doctor other than my regular doctors and specialists to agree with anything other than "it's all in your head" in like asking for an act of God, which I think is easier by far at this point. It is draining to not have these issues addressed and have that biased attitude thrown at me constantly. I've about given up asking for help, but what I have read here gives me something to send to my doctors to help educate them too. It is very apparent that they do not know much of anything regarding this disease and I know that my twin experiences alot of the same symptoms and health issues and you can't just blame it all as being psychsomatic. My husband has seen the results of what happens when I attempt to do much physically and suffer and cry and am too ill and in pain to get up or move my body for days on end. He has often noticed before I have that I am experiencing so many symptoms and am about to even pass out as have others who see me and ask me within about 5-10 min. of trying to even just do some shopping walking at a snail's pace. No fewer than 10 people asked me if I was ok recently on one trip I was forcing myself to do out of desperation to see the outside world instead of just my couch. I kept repeating I'll be okay I think more to myself than to them because of the severity of the issues I was experiencing. These have been constant for months and I'm drained and feel pretty hopeless to convince anyone or that any treatment will help. But I read this and find I am not alone and not imagining anything and there is information I can give to my doctors to check out. It's a start and a sliver of hope for me. I never knew that support and more information existed for this and other immune diseases. I am glad to have been guided to this place. Thank you for the information and sharing or your personal experiences. graceinGod
|Message Board :||http://www.info4pi.org/p2pforum|