Mayo Clinic diagnosis of Gammaglobulin deficiency: Any tips?

I am thrilled your infusions will be fully covered; it’s hard enough to cope with an illness, and then have to struggle with the financial and insurance pressures in the US. Best wishes; I truly,hope,the infusions help!
Jane in NC

@janeinnc Hi Jane - that’s an incredible bit of advice!

I’m 57 - so I’m not quite there yet for Medicare - and have regular insurance, but we’re investigating SCIg for my autoimmune disease as I developed a clot in my brain after my first IVIg treatment and the SCIg comes with less risk.

I have significant tremors which make doing any kind of fiddly work difficult. Do you think this might work for me too?

Thank you!
Pauline

@pm56 That is scary, that you got a clot in the brain, after I-V infusion!!I am on I-V infusion, and SCig just isn’t possible for me to do, with my age anf physical conditions! At the time, I am on blood thinners, but am supposed to go off them in 6 months. I’ve already had 2 recent strokes, so, now I’m not sure what to do? Maybe I should stay on blood thinners! I’ll discuss with my Dr. when I see them next! Thanks for posting this! Good luck to you!

Good morning Pauline,
Please, please advocate to get infusions/injections at a medical . The prescribing doctor’s office can (and will) code this accordingly; unfortunately, each insurance company has different (and horrid) co-pay/co-insurance rules which change annually. So you might still,have a co-pay.
Even under Medicare with supplement, because my home injection started in November, I had to,pay the first 2k last year; I always want to know ‘who,put the hell in healthcare?’
Wishing you all the best.
Jane in NC

@foundryrat743 are you on IVIG or a different kind of IV treatment like a biologic?

IVIG specifically comes with a thrombosis warning. I knew that when I signed the waiver as I’d already had two DVT’s, but I was desperate. I was being managed by a hematologist who - in hindsight - wasn’t very good or very careful. He advised I should come off the blood thinners for 3 days for a procedure, and they think that’s probably when it happened. We now know that I cannot be off blood thinners without bridging therapy. With 2 prior DVT’s and being on IVIG he should have switched me to bridging therapy for those 3 days but he didn’t. So here we are …

I would definitely speak to your team about the blood thinners and whether that IV treatment you’re on raises your risk for thrombosis. Best of luck 🙂

@janeinnc ok thank you for the information! I have NYS marketplace insurance (it sounds like you might too with the $2k max out-of-pocket plan?), so I will likely still have a co-pay, but they’re usually not bad as they’re often coded like chemotherapy and wind up being around $15 or so. I have usually met that out-of -pocket by May (if not sooner!) with my frequent-flyer visits at the ER, specialists, imaging etc.

Thanks again 😊

@pm56 IVIG with a thrombosis warning, is what I’m on! So, because I also have episodes of atrial fibrillation, I had been put on blood thinners. However, because I have, also, Parkinson’s Disease and Polyneuropathy, I have had way to many falls, so the solution to that was for me to get a heart implant, ‘The Watchman”, to help prevent blood clots from forming in the right atrial appendage, of the heart, which could prevent ischemic strokes from happening! Since I’ve already had 2 ischemic strokes, and now that I’m on this IVIG therapy, because of diagnosed CVID, where there is a thrombosis warning issued, with it’s use, I really am in a quandary! Your experience that you have shared, is helpful, so I will talk to my Dr. about that, and we’ll see what he says, and recommends to fix the risk of my having another stroke, caused by a blood clot ( Ischemic )? Thanks for your reply! I appreciate your valuable sharing!

@foundryrat743 I re-read your original post - you have primary immunodeficiency so they’re switching you from SCIg to IVIg because of the difficulty you’re having with managing the SCIg infusions - correct?

I think the biggest difference between us is the dosage. The immunologist told me that the dosage needed to treat an autoimmune disease is much higher than immunodeficiency (in fact he didn’t even know what dose to give me as he isn’t currently treating any patients like me, lol) - but I don’t know if higher dose means higher risk.

What I do know is the risk is higher via IVIg as you’re getting it all in one dose directly into a vein every 28 days vs. weekly under the skin where it absorbs more slowly - which is why they said yes to the SCIg for me.

Given my own experience, I think it would be good to confirm whether or not moving to intravenous delivery raises your clotting risk and definitely find out whether you need to stay on your blood thinner since you have a stroke history or whether the Watchman device will sufficiently manage the increased risk of the IVIg. Ask your immunologist, hematologist and/or whoever else manages your condition/s. I got second opinions too as this was a big deal for me. I would use these 6 months before they're talking about discontinuing the anticoagulant to set up all those appts so you have the information you need before then. Hope that helps 😊

@pm56 You are correct! Yes, I have the Common Variable Immune Deficiency disorder, and I knew that I was on a lower dosage! Indeed, getting this straightened out for me, is a big deal, because of my stroke history, for one thing! I have a few months to get with my immunologist, my electrophysiologist, and my neurologist, and I will seek their advice! Another twist, in my complicated medical problems, is that I also, have polyneuropathy, which has caused me so many problems, that I am in the process, of being tested for Chronic Inflammatory Demyelinating Polyneuropathy disorder! The treatment for that is the same I-V infusion treatment that I am getting for CVID! However, it would have to be at a much higher dosage level, according to my immunologist. So, my immunologist is contacting my primary Doctor, and my Neurologist, concerning the way forward! Another problem that I have, is that my primary Dr. has not contacted me, or seen me, since my Medicare ‘wellness’ check, in September, 2025, where he brushed me off, with just a brief breathing stethoscope reading! He was running late, and told me he had a schedule he had to keep, so off he went! I did not have s chance to talk with him, about any of my concerning symptoms. This was a couple months before, all of these diagnoses came up, which occurred when my new Neurologist saw me in December, and diagnosed me with polyneuropathy and ordered an emergency MRI, because of symptoms I was having, where I was having severe balance problems, could hardly walk, and had had several falls, in the early fall season! My previous neurologist had retired in February! I had seen him, briefly, in January, where he treated me for Parkinson’s. I had to wait 11 months, to get an appointment, with the new neurologist! In recent years, thousands of baby boomers, like me, had retired to the beautiful, touristy, area, where I live! We have only one regional hospital, and it has been overloaded with ‘white hairs’ ever since. So, the clinic, where I go to see my primary Doctor, in order to take care of the influx of new residents, has the clerks set up Medicare ‘wellness’ checks appointments, once a year! It didn’t used to be this way. I’ve lived here for 30 years, and the primary care Dr. has seen me every 6 months, where he took the time to examine me thoroughly, and discuss problems with me! I feel like it’s assembly line medicine, now, and when I did have some alarming symptoms, for several months, in 2025, I didn’t know what to do, except maybe go to ER, where, the last time I was there, with my wife, we had to wait 6 hours to be seen, and the ER Dr. misdiagnosed my wife’s problems, and eventually she was seen by a cardiologist ( at my insistence ), cause she had chest pains ( angina ), with a history of CABG bypass, and three previous heart attacks. My son-in-law is a Dt. at this regional hospital, and I called him, when my wife was misdiagnosed in the ER! He got the chief of Cardiology to come down to the ER, promptly! The cardiologist took one look at my stricken, pale faced wife, took an EKG, and, immediately thereafter had her transported immediately to the Cardiac wing of the hospital, directly into the cardiac intervention laboratory operating room, where the cardiac surgeons unblocked an artery, that was almost completely blocked with plaque, and they inserted a stent, which was successful, and she went into recovery and was hospitalized for several more days! So, that was my experience with the ER department, of my local, regional hospital, from a few years ago! I’m still traumatized, just thinking about that experience! So, no ER for me! Anyway, in my case, in the summer, of 2025, when I was having some worrisome symptoms, like falling, numbness, balance and vision problems, I chalked it up to, perhaps, a progression of my Parkinson’s! I thought, maybe, I could talk to my family doctor/primary doctor, at my Medicare wellness visit. As I’ve stated before, he had no time for me! Administrators ( non-medically trained people ), were insisting that the Dr.’s at that clinic keep to a strict time schedule allowed for Medicare wellness visits! Since I have not heard from my family Dr. since that visit, and have since, based on the MRI results, had 2 strokes, polyneuropathy diagnosis, immune deficiency disease, and possible demyelinating polyneuropathy disorder, I have decided that, perhaps, changing my primary care Dr. to a geriatrician Dr. might be a good idea! Do you think that could be a good idea, to changeout my primary care Dr.? A geriatrician might have the where with all to properly manage my health care, I reckon!

@foundryrat743 Gosh, I'm so sorry. It sounds like both you and your wife have been through a lot recently. If it turns out you do have CIDP - there is a product that is used to treat CIDP that carries no thrombosis warning called Vyvgart Hytrulo. They didn't think I'd get approved as I don't have CIDP, but this is a word for word excerpt from my own medical notes written by the new "COMPETENT" hematologist to treat my clotting issue in connecting with my dermatomyositis/connective tissue disease:

"A suggestion has been made to substitute Vyvgart Hytrulo which consists of the Fc portion without Fab portion of the immunoglobulin molecule, therefore, theoretically may have less risk for thrombosis. There are no box warnings for Vyvgart and thrombosis is not listed amongst the adverse events."

So if you DO have a diagnosis for CIDP - Vyvgart Hytrulo may be an option that you could talk to your doctor about since there is no thrombosis warning at all. If it turns out that you do NOT have CIDP, my neurology/rheumatology/hematology team where discussing the possibility of an IVIg product with the clotting factor XIa removed, which is designed for patients at risk of thrombosis; I believe it's called ALYGLO. The concern for me always is will it be approved - but once your diagnoses are confirmed, maybe these are two safer options that you can discuss with your team. However I am not sure if the Alyglo is only used for autoimmune treatment or it can also be used at the lower dose needed for immunodeficiency treatment.

It sounds like you're not getting the time you need to discuss your changing healthcare and that doesn't seem fair at all. I absolutely would look for a geriatrician if you think that will help get you more face time which is what you need when you have a complicated medical history. My rheumatology appointments are usually scheduled for 45 minutes when I'm not doing well - not 15 minute-follow ups - as there's no way to squeeze in reviewing all the other specialist notes, imaging, test results and then still go over drugs and whatever else in that short window. Advocate for yourself because if you don't, nobody else will!

It took me 4 rheumatologists before I found one who finally figured out I had dermatomyositis, but by that point the steroids the other three had me on all that time had destroyed my corneas, suppressed my adrenal glands, and have given me myopathy so I need a walker now 🙁

Best of luck to you and your lovely wife.

Hang in there,
Pauline

P.S. You're not "white hairs" . . . you're "silver foxes" haha 🙂