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IgG levels up, no improvement in symptoms

Autoimmune Diseases | Last Active: 6 days ago | Replies (11)

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@sb4ca

With your hypogammaglobulinemia, do you have additional immune defects? Were you able to build an antibody response to the pneumonia vaccine challenge? I'm only asking as once upon a time I had hypogammaglobulinemia and at the time did not qualify for infusions. No one even gave me the vaccine challenge at that point. But it transitioned to CVID (common variable immune deficiency) which is when IgG is low along with low IgA or low IgM or both. That just makes me curious if something like that is occurring here. Do you have all of your IgG's measured when you do your troughs? If so, then it would show up there.

Just confirming that you have been on Asceniv for a year now and only in the last 3 months have you seen your IgG trough number rising? I'm assuming you're having your blood drawn only right before your infusion, correct? I would think that after 12 infusions and only getting into the 800's means the drug is not working well for you. It might be helpful to increase the dose by a reasonable amount. I'm not familiar with this brand of IVIG you're using but increasing by single grams seems really low when the strategy is to boost it adequately. It's possible your immunologist is being conservative since IgG has moved some lately-just not enough. But another option open to you is trying a different brand. That is done quite often, at least with those with CVID and this can't be much different.

IVIG can be hard on the kidneys and I wonder if switching to sub-q would be an option for you. Do you already have some kidney disease happening? Sub-q also stabilizes your IgG levels more evenly without creating the big dips at the end of the 28 days or whatever monthly cycle you're on.

I would also say that some of your symptoms may not be related to your immune deficiency and/or infusions won't help a lot. Migraines are not part of CVID though people can get side effects from infusions causing migraines. If that's the case, switching brands, slowing the infusion rate or switching to sub-q can be helpful. Are you getting pre-meds like Benedryl or steroids? Body/joint pain isn't part of CVID either unless it's being caused by an infection that creates those symptoms. It wouldn't be surprising for you to have these pain issues from inflammation either because your trough is so low. I developed whole body lymphadenopathy and after a big medical work-up, the doctors believe it's from the CVID itself where I am constantly fighting infections causing the lymph nodes to swell. And fatigue is terrible issue to deal with. But also be aware that people with primary immune deficiency are prone to autoimmune disease though they're very difficult to test for. This is because we lack the ability to create antibodies as the basis of an immune deficiency. And once on infusions that becomes more difficult as the donor pool antibodies will show on lab work giving some false positives. Biopsies and imaging become important tools.

I would suggest you look at the Immune Deficiency Foundation website. Community support can be invaluable for those like us. It has a vast amount of information on immune deficiencies with a lot of videos and presentations on many different aspects of the conditions including symptoms. You can look up immunologists, get help with insurance or financial help for cost issues just to name a few. I hope in the next months you'll find yourself improving and if not, keep pushing your immunologist. Make sure if you need antibiotics they cover a longer period of time. A regular course typically won't work.

Best of luck and wishes.
https://primaryimmune.org/

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Replies to "With your hypogammaglobulinemia, do you have additional immune defects? Were you able to build an antibody..."

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.