IgG levels up, no improvement in symptoms

Posted by 525gooze @525gooze, Dec 8, 2024

Diagnosed with Hypogammaglobulinemia after 3 sets of labs showed same results.
IVIG one year out on Asceniv, IgG has increased in last set of bloodwork but symptoms have not improved. They had first 3-4 infusions. Dr wants IgG level to get to over 1000, now at 800 but
Migraines, body and joint pain, sinus, etc. worsening again.
Dosage of Asceniv just increased but only by 3 grams which I understand is too low, normally 5-10 at least.
Dr was worried about renal functions, appreciate real experiences etc

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@525gooze

Thank you for your response. I had none or very little response (from what I remember) to pneumonia vax trial.
IgG’s are checked every 3 months but not all of them each time along with basic panels and whatever she may want depending on prior results. She will check all before next infusion.
The concern with provider is kidneys which bloodwork sometimes show on lower end/normal range with last result much improved so this is why increase from 20 gr to 25, which is a really the lowest amount given with the brand.
My husband said recently, the provider is more worried about kidneys than treating your problem. She is going on numbers and algorithms which don’t always work. When I first saw this provider she said the med I am on was easy to get started with and adjustments, change of brand are to be expected but last several months has said this can be a long process lets stay with same brand, dosage, and kidneys. I am not sure how much experience the few Dr’s have with these problems as it seems allergy patients are the majority of their practice.
The migraines, body and joint painI have had for many years before but after second or third infusion lessened by 80% or so. This is another reason we don’t understand why the waiting game where symptoms are now as bad as before first infusion and IgG levels dropping along with. I also do not experience any side effects from the med. I do take Benadryl/500 mg Tylenol before as directed.
In writing this it is very apparent I am not in the right place yet. I have this forum and knowledgeable people like yourself to thank.
I have a referral to another Dr (found out yesterday) so I see him in January, fingers crossed he is a better fit.
If not there is another Dr about four hours away as another possibility. I will stay proactive, thanks again, and many good days for you in your journey.

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@525gooze You are worried about your current rheumatologist’s focus on your kidneys and not your other symptoms. Now you’re thinking of changing doctors. Here are links to 2 different organizations that keep records of doctors who specialize in autoimmune diseases.
https://rarediseases.info.nih.gov/. Genetic and Rare Diseases organization
https://rarediseases.org/. National Organization for Rare Disdeases
When you call one of these organizations, you might also ask if the doctor you plan to see is on their list.

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@becsbuddy

@525gooze Welcome to Mayo Clinic Connect! I think the members will be better able to hep you with your concerns. I doubt that many members will be able to really understand all of the lab values. No one here is a medical professional. They can best help by relating their own experiences as compared to yours. But we’ll see; we’ve got some real intelligent people on Mayo Connect!

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Thank you. Like many people, my body presents more challenges the older I get. Having hypogammaglobulinaemia for more than five years and getting IVIG treatment every three weeks has been a literal lifesaver. Recently I have been diagnosed with moderate hip arthritis and am interested in resolving the issue. Speaking with an orthopedic physician yesterday, I was told that hip replacement surgery frequently comes with bacterial infections and that my compromised immunity might impact my ability to have this surgery. I'm just reaching out to see if anyone has any ideas about how serious these infections could be or perhaps other options.

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My hubby has IgG4 RD disease and now he has to try and different type of drug because he had and allergic reaction to Rituximab!! I got in to get more information and this Rare disease and and share information

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