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.
I wrote under the topic "Possible Gammagard side effects" about the symptoms I've been experiencing since beginning subq infusions in late January, 2016, an itchy raised rash on my forearm that does not go away, andmore life-disruptinga bad recurring headache that has been waking me during the night.
But someone generously replying to my post raised an interesting subject that I think affects many of us: the multiple doctors we are obliged to see, 1) some/most with no idea at all of what CVID is"Interesting, I'll have to look that up," 2) usually with no mutual communication when a problem comes up, and 3) each often insisting to his/her own take on a problem, though it differs from another doctor's diagnosis or opinion. (No argument about the CVID though.)
**Do you experience this problem too? And how do you deal with it? To whom do you listen?**
For instance, in my case, there's the rheumatologist I've been seeing for many years, who is the one who did the tests leading to my diagnosis, and who I trust the most (but he is in a different city/hospital). But there is also a neurologist, a dermatologist, and an internist involved at times, not to mention the immunologistwho seems only to keep track of the infusion material, Gammagard in this case.
Specifically, I finally got in to see a substitute dermatologist yesterday about the rash, which seems to get worse after each weekly infusion, then eases off toward the end of the week. (My feeling is that I can tolerate it if it's not dangerous, since the infusions are working so well). There was an aggravating 50 minute wait, sometimes necessary if there's been an emergency with a prior patient, but a wait made worse by THE SAME SONG being played in an endless loop the entire time. It was like being stuck in some weird dream.
The dermatologist was predictably mystified. **Then she guessed that the rash was from my "immune system being turned back on by the infusions."** ? Does this make sense to anyone? So, maybe indirectly, not directly, linked to the Gammagard. Maybe. She gave me a sample salve that made it itchier when I used it.
I was so frazzled by the wait and the music and the stress of trying to start from zero with a new doctor that I forgot altogether to tell her about the headache, which woke me again this morning 3 1/2 hrs ago, and lingers. (I now have to sleep with two cold gel packs in a little insulated bag next to the bed, just in case.)
And that's that, until I see my rheumatologist next month, and my neurologist the month after that, and my real dermatologist the month after that. Probably each with a different opinion.
So, multiple doctors? Multiple opinions? How do you handle it?
But someone generously replying to my post raised an interesting subject that I think affects many of us: the multiple doctors we are obliged to see, 1) some/most with no idea at all of what CVID is"Interesting, I'll have to look that up," 2) usually with no mutual communication when a problem comes up, and 3) each often insisting to his/her own take on a problem, though it differs from another doctor's diagnosis or opinion. (No argument about the CVID though.)
**Do you experience this problem too? And how do you deal with it? To whom do you listen?**
For instance, in my case, there's the rheumatologist I've been seeing for many years, who is the one who did the tests leading to my diagnosis, and who I trust the most (but he is in a different city/hospital). But there is also a neurologist, a dermatologist, and an internist involved at times, not to mention the immunologistwho seems only to keep track of the infusion material, Gammagard in this case.
Specifically, I finally got in to see a substitute dermatologist yesterday about the rash, which seems to get worse after each weekly infusion, then eases off toward the end of the week. (My feeling is that I can tolerate it if it's not dangerous, since the infusions are working so well). There was an aggravating 50 minute wait, sometimes necessary if there's been an emergency with a prior patient, but a wait made worse by THE SAME SONG being played in an endless loop the entire time. It was like being stuck in some weird dream.
The dermatologist was predictably mystified. **Then she guessed that the rash was from my "immune system being turned back on by the infusions."** ? Does this make sense to anyone? So, maybe indirectly, not directly, linked to the Gammagard. Maybe. She gave me a sample salve that made it itchier when I used it.
I was so frazzled by the wait and the music and the stress of trying to start from zero with a new doctor that I forgot altogether to tell her about the headache, which woke me again this morning 3 1/2 hrs ago, and lingers. (I now have to sleep with two cold gel packs in a little insulated bag next to the bed, just in case.)
And that's that, until I see my rheumatologist next month, and my neurologist the month after that, and my real dermatologist the month after that. Probably each with a different opinion.
So, multiple doctors? Multiple opinions? How do you handle it?
I had a lovely headache last night too! I think mine was the weather and I forgot to take my headache preventative medicine...oops. I had to get up at 3 am to take treximet. You could call and ask Immuno about headaches. Has Immuno been managing that? I'm lucky Immuno is managing headaches, gammunex, and auto immune issues.
My best advice is to specifically ask at next appt with each respective dr about what they would be managing. That way you get clear answers and management of each concern.
These doc, usually, but not always, are allergist/immunologists who took a two year fellowship in Clinical immunology.
In the standard allergy immunology residency most allergists have never seen, let alone treated, a patient with a primary immune disease.
Clinical immunologists are few and far between and usually found in a major medical center or medical school.
They are worth the effort in order to have an expert involved in your care even if you get the vast majority of your everyday care near your home.
So the two present themselves as immunologists. DId you check to see where they did their fellowships? Another way to see if they pass the quick test is to see if they actively treat at lest 20 patients with a PI.
(In general, since starting the subq infusions, I feel so much better! I was hoping not to get more infections, but I hadn't dared hope for that. Now: no infections since December, 2015. I think it's the longest I've gone in years without sinus or upper respiratory infections.)