Mayo Clinic diagnosis of Gammaglobulin deficiency: Any tips?

Posted by foundryrat743 @foundryrat743, Mar 14 2:09pm

With a Mayo Clinic diagnosis of a Gammaglobulin deficiency, I have been told by my immunologist that I need to be on infusion therapy. Does anybody here have any idea of costs involved, considering that I am on Medicare, and I have a Medigap, plan F, policy, with a supplemental insurance company! I was told the medicine would come from a specialty pharmacy, and a nurse would come out, and teach me how to set up infusion treatments for myself! Any info. or advice that somebody could give me, would be appreciated!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

pm56 | @pm56 | May 12 8:51am

In reply to @foundryrat743 "@pm56 Thanks, Pauline, for your wise advice, and sharing your learned experiences! When I was exploring..." + (show)

@foundryrat743

@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

Jump to this post

@foundryrat743 Screw him Doug. That’s all I can say. His lack of care and concern is totally unacceptable.

People like us - people with serious, complicated medical histories - need COMPETENT GP’s who care enough to see us when we need to be seen or to pick up the phone when necessary.

I couldn’t get in with my regular GP recently and had to see “the new guy” for pre-admission testing. Let me tell you - not only was he super nice, but he went above and beyond, calling the next day when my kidney numbers came in high and coordinating for me to retake the test. Turns out I was advised by a second opinion not to take this test (a cerebral angiogram for a CVST) so I called and left the new guy a message, and he called me right back. He withheld the clearance for the pre-surgical so it looked like I wasn’t cleared rather than I just changed my mind. I was impressed that he called back so quickly and was happy to cooperate - it occurred to me that it’s because he’s new … he’s looking to connect with patients and make a good impression.

Maybe call around and see if there’s a doctor who’s just establishing themselves. Perhaps they don’t yet have the 20+ years of experience, but they are also less busy and eager to please.

Stay well 😊
Pauline

foundryrat743 | @foundryrat743 | May 12 3:30pm

In reply to @gailmarienewton "I have been on 35,000 mg infusion of Gammagard for 7 years for CVID, sjogren's syndrome,..." + (show)

@gailmarienewton You sure do have a lot going on! I’m so sorry that you have been afflicted, with such serious disease, and I will hope and pray, for the best, for you, going forward! I’m glad the infusions have helped, so that your body is better able to fight infection! I found out many years ago, that having a positive attitude, can make all the difference, when applied to many aspects, in what life may bring my way, whether it be working, home life, medical related. challenges, relationships, etc. I have learned that successful outcomes, in many situations, require a positive attitude, and have applied that basic principle in the situation I face right now, medically! Take care! Again, wishing you the best! 😃

gailmarienewton | @gailmarienewton | May 12 3:50pm

Try Qulipta (prescription) for migraines. The Gammagard gives me migraines....the Qulipta takes the migraines away.

foundryrat743 | @foundryrat743 | May 12 4:03pm

In reply to @esgsf "Sending you healing thoughts and some good news about IVIG. I also have Selective Primary Immunodeficiency..." + (show)

@esgsf Thanks for your most encouraging reply! I’m happy for you, to hear that the infusions help you so much! My IgG, IgM, and IgA, have been low, consistently, for a while! The last six months, I’ve noticed a gradual deterioration of my basic well-being, where fatigue, and not having a lot of energy to just accomplish basic household tasks, has become difficult for me to sustain! Since I am a caregiver, for a wife in heart failure, where getting enough oxygen, to breathe, is a challenge for her, on top of her having diabetes, where she is reliant on insulin shots, so, trying to help her, I get extremely exhausted at times, and I don’t know where I can get enough energy, which is upsetting to me, to accomplish all of my daily responsibilities! So, anyway, I’m just starting on this infusion journey! Good news for me, is that, after my first infusion, I felt a bit better, having more energy! My joints didn’t seem to be quite so stiff, which is such a blessing! I feel encouraged by your sharing your infusion experiences! Thanks a million!

foundryrat743 | @foundryrat743 | May 12 6:12pm

In reply to @gailmarienewton "Try Qulipta (prescription) for migraines. The Gammagard gives me migraines....the Qulipta takes the migraines away." + (show)

@gailmarienewton Thanks! I do get migraines!! I will discuss Qulipta with my Doc. concerning migraines! I did not get a migraine after my first infusion! One never knows about the next infusion, so I’ll discuss this with my Doctor! Again, thanks for your advice!

manahajpir | @manahajpir | 6 days ago

I have diagnosed with statin induced necrotizing myopathy since October 2025. My treatment started with 3 days in a row each month for Gamunex-c infusion. At home infusion, nurse will come and do it via IV. Mine is not subcutaneous.
Each day takes up to 4 hours of infusion.
Cost varies depending on insurance. It is expensive (some cases up to $10k) per treatment. I have paid my share of cost and some percentage of my insurance. BUT, I just figured out that, for my new medication, Rituximab, since my insurance denied it, we sent an application (from my drs office) to the non profit organization that approved the medication for me for free as long as no insurance or denied by insurance. They go through manufacturer’s. Check on that with your doctor’s as well. Good luck!

foundryrat743 | @foundryrat743 | 6 days ago

In reply to @manahajpir "I have diagnosed with statin induced necrotizing myopathy since October 2025. My treatment started with 3..." + (show)

@manahajpir I’m sorry to hear that you have that particular ailment, and that you have to have infusions! It’s such a rigamarole to get financing for this extremely expensive treatment, and I’m worn out from all the hassles that I’ve been through, with 2 Insurance denials, etc. Finally, though. I got coverage, with the Medicare and Supplemental, so I’ve started with the infusions! Dealing with Medicare on several issues, where they have denied, has been downright nasty, for me! Very discouraging! I’m glad my Doctor and his Nurse Manager went to bat for me! Good luck to you, too!

Please sign in or register to post a reply.