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.
My internist (not immunologist) told me to begin substituting Claritin for the Benadryl I was using as a premed to my weekly subQ infusion of Gamunex C. The Benadryl in combination with Lunesta (for sleep) was too much and had made me woozy all of the next day, and there is recent news regarding Benadryl and it's possible connection with brain shrinkage. So 2 weeks ago I did substitute it but had localized redness during the infusion at each of the 4 needle sites. Then this past week, I took the Claritin again for my premed and during the infusion over half of my abdomen turned bright red and heated and remained so during the treatment. That was Wednesday night and the redness went away shortly after the infusion but I've also had an almost non-stop headache since. It's not as severe as the aseptic meningitis headache I had following my first IVIG treatment but it's not seeming to respond very well to the alternating Tylenol and Ibuprofen I'm using. I was concerned this morning because I also awoke with a nausea similar to that with the meningitis. It's improved thank heavens.
I put a call in on Thursday to my immunologist's office regarding it all and thought I'd hear from them a reply from the dr. by Friday afternoon but didn't. It's not severe enough to go to ER but is of concern and I'd like to get rid of the headache before Monday. The infusionist I talked with when I called in said she'd tell the dr. and get back with me but the dr. might suggest splitting my subQ into 2 per week with lesser amount...but I HATE that idea. I think the Claritin doesn't work to help like the Benadryl. Is it also possible I'm having reaction to the Gamunex C now although I've been on it for about 1 1/2 years? Has anyone here decided that the Gamma Globulin isn't worth doing because of the side effects? It seems to have helped me with some energy increase and possibly fewer infections but what are the dangers in stopping? I'm a bit frustrated with the lack of timely response to my call to the immunologist's office especially in light of the COST and time involved in treatments. ASAP: Does anyone have any experience or ideas? Thanks!! I'm just trying to think things through.
I put a call in on Thursday to my immunologist's office regarding it all and thought I'd hear from them a reply from the dr. by Friday afternoon but didn't. It's not severe enough to go to ER but is of concern and I'd like to get rid of the headache before Monday. The infusionist I talked with when I called in said she'd tell the dr. and get back with me but the dr. might suggest splitting my subQ into 2 per week with lesser amount...but I HATE that idea. I think the Claritin doesn't work to help like the Benadryl. Is it also possible I'm having reaction to the Gamunex C now although I've been on it for about 1 1/2 years? Has anyone here decided that the Gamma Globulin isn't worth doing because of the side effects? It seems to have helped me with some energy increase and possibly fewer infections but what are the dangers in stopping? I'm a bit frustrated with the lack of timely response to my call to the immunologist's office especially in light of the COST and time involved in treatments. ASAP: Does anyone have any experience or ideas? Thanks!! I'm just trying to think things through.
I wouldn't stop the sub q. I do get some locals swelling and redness. It seems to increase a bit as infusion continues, then decreases. After infusing I do have some redness around where I infused. I goes away in a day or two. I use a heat pack on abdomen while infusing because it feels good. It is a heat pad that is filled with buckwheat seed and it's a bit heavy but he pressure feels good on my abdomen. Th next day I have some swelling and tenderness and I switch to ice.
If trying a different allergy Med doesn't work can you decrease your dose of Benadryl? You could always by the children's liquid and take that smaller dose.