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Mayo Clinic diagnosis of Gammaglobulin deficiency: Any tips?
Autoimmune Diseases | Last Active: Jun 27 7:14pm | Replies (70)Comment receiving replies
@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 🙂
Replies to "@foundryrat743 Gosh, I'm so sorry. It sounds like both you and your wife have been through..."
@pm56 Thanks, Pauline, for your wise advice, and sharing your learned experiences! When I was exploring possibilities of having a geriatrician be my primary care doctor, because the family doctor I have now, seems uninterested in investigating and helping me make sure, that my various diagnosed. medical ailments, are monitored, and coordinated, It is not as easy as I thought it would be! I have not heard from him, since September, 2025! My neurologist, my electrophysiologist, and my immunologist, and allergy specialists, have all sent reports, asking for his input, since I had my ‘eventful’ emergency MRI, revealing white matter disease, two strokes, plus basal ganglia Parkinson’s Disease, and possible evidence of an infection, previously, possibly signaling an immune disorder, Wallerian Degeneration! Oh, snd I must not forget, that the MRI revealed evidence of a previous Tonic/Clonic Grand Mal seizure, for which I was hospitalized, about 12 years ago! No word from my. primary care Dr., to any of the specialists, or myself! I realize he has hundreds of patients, including many ‘white hairs’ (silver foxes), like me! Even though, one would think that with the major diseases, and ailments, that the specialists have diagnosed me with, since January, 2026, that it would pique his interest enough, that one would think, he would at least call me, and inquire how I am feeling, and would I like to have a talk with him, going forward, to manage my health! I’ve been with him, for at least a dozen years, now! So, I got a big surprise when enquiring about geriatrician care! I found out that Medicare does NOT cover geriatrician’s office visits! So, now I am looking for an MD Internist, to be my next primary care Doctor!! I live in a city, with a regional hospital, and there are at least 220 Medical Doctors living in snd around this city, so surely there must be some Internist, somewhere, who would welcome me as their patient, and who would care enough, to help an old man (nearly 80 years old ), so that I could continue to independently live, in my golden years! I appreciate you being so supportive, Pauline! Sincerely, Doug
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@pm56 Thanks for the great info! I will discuss your suggestion, with my neurologist, and, yes, I will see if I can be seen by a geriatrician in the area that I live in. You are right about one advocating for oneself!