Any information on Castlemans Disease??

[supportive]

Its been a while since i have posted, so much happening, husband has been getting frequent bouts of pneumonia. Now most recently he has been diagnosed with castlemans disease..they had a hard time finding out what was causing all the lymph nodes to enlarge and severe edema plus pneumonia..CD4-137 vl 88..and after 22 days in the hospital he's finally home, but on oxygen. Ive looked on the internet about castlemans and got some information on it but was looking for someone who has it and can give me some insight on it..thankyou so much.

[Realist]

Hi Supportive,

I don't have this condition, or know anyone who has, but before I was diagnosed with HIV, I was investigated for a number of lymph disorders and this came up as a possible. From my understanding, Castleman's is extremely rare. The difficulty with those of us who have HIV is, along with HIV, the disease attacks the immune system (hence the ever more frequent bouts of pneumonia of your husband) and is caused by a herpes variant virus. So, essentially the body gets attacked twice.

The single site version is usually dealt with by surgically removing the lymph node affect. When multiple sites are affected (in the case of most HIV/AIDS cases) the condition is more difficult to treat, but starts with HAART and possibly an anti-herpes treatment.

The rarity of the condition makes it difficult to find others in the same position but there are some web links which you might find useful (although you may have seen them already). There are a number of studies being undertaken into the multi site version of the condition currently and there may be one in your local area that your husband would be eligible to join.

http://www.castlemans.org/patient-resources

https://www.castlemansresearch.com

Good luck.

[supportive]

Thankyou Realist, i have been on the site castlemans.org , and yes from what i have heard it is a rare condition, our dr said he has only seen 6-8 cases in the 15+yrs in the field. They also changed his hiv meds from atripla to 3 pills, norvir, prezista,truvada. Really dont know what to expect from these new ones. He doesnt like taking the 3 compared to 1 but what choice do you have at this point. Having a hard time with this. Its alot to take in, in a 1yr time. But trying to stay positive and help him the best i can. Thankyou again for your response