Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hi I am currently 41 years old and have been diagnosed with CVID and on treatment for 15 years. I have been real sick for almost 7 months now with weird rashes, fever, joint paint, bone pain, tight chest, and fatigue so here is the story.
My immunologist ordered updated labs CBC & Igg counts etc when they came back with both WBC and RBC low she told me to follow up with my PCP. So he ordered an updated CT scan of he chest of which they found 17 nodules, AP window lymphodenopathy, and numerous enlarged nodes so I was referred to a pulmonologist who did bronchioscopy and told me I was fine. The report said all the scrapings, washings and biopsies had excessive WBC's observed. I also had sputum test and screenings for fungal. I also was seeing a dermatologist for these skin lesions.
Still running a fever I returned to my PCP who then referred me to an Infectious Disease dr who I saw 3 weeks ago. He did numerous bloodwork and also reviewed the dermatology reports and yesterday I found out that I have latent TB of which I will now have to be on meds for at least 9 months and I have Systemic Lupus so getting a referral to a rheumy. They are thinking the Lupus is in a major flare and has been for 7 months causing the above listed problems. So he says the rheumy will have to use immunosuppressive drugs and we will do a delicate dance of balancing the immunosupressive drugs against the Hizentra as well as trying to keep the TB as latent. Has anyone else ever been down this road?
This is the condensed version as I could detail out many more appts tests etc but talking about the ones of concern to me I guess
Any input is welcome as I currently feel like I am drowning and I am so scared, frustrated, and tired...
Thanks for understanding
My immunologist ordered updated labs CBC & Igg counts etc when they came back with both WBC and RBC low she told me to follow up with my PCP. So he ordered an updated CT scan of he chest of which they found 17 nodules, AP window lymphodenopathy, and numerous enlarged nodes so I was referred to a pulmonologist who did bronchioscopy and told me I was fine. The report said all the scrapings, washings and biopsies had excessive WBC's observed. I also had sputum test and screenings for fungal. I also was seeing a dermatologist for these skin lesions.
Still running a fever I returned to my PCP who then referred me to an Infectious Disease dr who I saw 3 weeks ago. He did numerous bloodwork and also reviewed the dermatology reports and yesterday I found out that I have latent TB of which I will now have to be on meds for at least 9 months and I have Systemic Lupus so getting a referral to a rheumy. They are thinking the Lupus is in a major flare and has been for 7 months causing the above listed problems. So he says the rheumy will have to use immunosuppressive drugs and we will do a delicate dance of balancing the immunosupressive drugs against the Hizentra as well as trying to keep the TB as latent. Has anyone else ever been down this road?
This is the condensed version as I could detail out many more appts tests etc but talking about the ones of concern to me I guess
Any input is welcome as I currently feel like I am drowning and I am so scared, frustrated, and tired...
Thanks for understanding
I have RA, lupus, and scleroderma in addition to CVID. I am 42.
It is a balancing act as you described, but it is possible. Try to assemble a good team of doctors who will work together. I have an immunologist, pulmonologist, cardiologist, rheumatologist, gastroenterologist, and the "quarterback" of the team is my primary who is an internist. It has taken me a few years and I've left a few docs who just werent right for me, but now i have a great team. I pray the best for you as you manage these conditions.
it is possible to throw this mess into remission with the right team of docs!
I want you to know that you Will feel better. I am on plaquenil and it does help. I don't have the lung nodules you have and I am so sorry but I think Kelli is a tremendous resource on that!
Hang in there!
Diagnostic issues in autoimmunity: Antibody based testing (we dont make antibodies very well, not very accurate in us), ANA/RF usually negative in CVID with autoimmune arthritis AND when we do show an antibody response its from our donor IVIG WE NEED A GOOD TEAM Experienced rheumatologist clinical evaluation is VERY IMPORTANT!
Here is a link to the notes I posted here, although I have 4 pages of them:
http://www.dailystrength.org/c/Common_Variable_Immunodeficiency/forum/14998948-notes-patient-education-meeting
good luck!
IF you can't stand it anymore you can go to an ER and insist on getting pain relief. I know it is a yucky place to go but they can help you in a pinch. If your liver is all swollen, there is a chance that being admitted would help you. They can give you fluids and keep an eye on your liver functions and try and bring them back down.
Maybe they can at least keep you comfortable.