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.
The best news is that, thanks to this support group, I am now doing the subq infusions, andbest of allfeeling so much better in general. My fourth one is today, and I've even done the punctures myself the last two times. (I didn't even feel them last time thanks to the Lidocaine cream, applied at least half-an-hour in advance.) I never thought I'd be able to do it.
The problem now is side effects: first from the big prednisone dose of the day before and day of infusion 50 mg each time), which gives me sleep-disturbing dreams. So my immunologist suggested 25 mg the day before. But then last week came the headaches two days after the infusion, surprisingly, but reminiscent (head and neck) of last November's meningitis, post IVIG. So the immunologist suggested going back to the 50 mg the day before, since that's the only thing that had changed from the week before.
I know from this site that it can take awhile finding just the right mix. Any other insider suggestions?
The main thing is the feeling better part! Honestly, I'd forgotten what it was like to feel so well.
The problem now is side effects: first from the big prednisone dose of the day before and day of infusion 50 mg each time), which gives me sleep-disturbing dreams. So my immunologist suggested 25 mg the day before. But then last week came the headaches two days after the infusion, surprisingly, but reminiscent (head and neck) of last November's meningitis, post IVIG. So the immunologist suggested going back to the 50 mg the day before, since that's the only thing that had changed from the week before.
I know from this site that it can take awhile finding just the right mix. Any other insider suggestions?
The main thing is the feeling better part! Honestly, I'd forgotten what it was like to feel so well.
I have had 4 Monday at-home subq infusions, and I think most of my side effects (disordered sleep, headache) have come from the high prednisone dose, 50 mg the day before, and 50 mg the day of the treatment. It is an issue--though not as serious as being ill without the treatment--because waking up 4 times during the night with my heart pounding is not very restful, and I'm a big fan of sleep.
Two weeks ago, my immunologist (very responsive) said to lower day-before dose to 25 mg, and that was the week I awoke on Thursday to a massive headache (neck too) that lasted almost 4 days. That, I think, was an infusion related side effect. But I'm trying the lower dose again today, because my doctor really wants to get the prednisone down. (And maybe that bad week was a coincidence, as I also have systemic lupus and migraine history.)
The good news: I've started working in the garden again a bit, and we took our rescue to the dog park for the first time, topping it off with a visit to the opening of a new, local coffee shop, and Iscraped gunk off the floor to prepare for a new are rug, and cleaned out the garden shed (not the same day, though this might be the prednisone talking, come to think of it!) and had a friend over to dinner last night. I could have never done some of these things in recent months, before treatment. AND I'm partway into writing the first book in a new series for my publisher (children's novel). After the last 12 months of almost-constant illness, what a relief!
Thanks again for your advice, Kelli. I'm upping the water intake (75 oz!! you're a champ) and definitely wishing you well. Fingers crossed for me, too...