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Mayo Clinic diagnosis of Gammaglobulin deficiency: Any tips?
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!
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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!
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1 Reaction@janeinnc I have been on IVIG(Immunoglobulin for probably 30 years. A few years ago they tried to get me to switch to the process where I put it in my abdomen. I didn’t do well and now the nurse comes every 28 days and gives me an infusion in my arm.
Once I get my deductible paid, Medicare pays for it.
I used to get an illness and stay sick for months. Now with IVIG I have illnesses for a much shorter time.
Best wishes on your journey.
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3 Reactions@htolan I am most appreciative of your sharing your many year’s experience, of having to have infused Immunoglobulin! Also, I see where there is hope, for me to feel better, where, between overwhelming. fatigue, and drawn out illnesses ( like sinus infections ), maybe it won’t take so much energy. out of
me! I hope I can stay on the professional nurse preparing, and administering the infusions! Thanks for the good wishes! Take care!
@itsmeagain
It’s expensive but the specialty pharmacy can secure a grant for you from the PAN Foundation ( which they probably know) to cover those costs. That’s how mine is paid for. I don’t recall the exact costs (mine is for CIDP) but treatments are several thousand dollars. The PAN Foundation is set up specifically for situations like yours-to cover lifesaving costs for situations just like yours. You can also apply for a grant yourself but the pharmacy should do it. It’s a common practice.
Good luck and Gd bless.
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3 Reactions@itsmeagain Thanks for the great information! I will definitely apply to the PAN foundation, as time goes on. CVID is my diagnosis for sure, from the Mayo Clinic testing, but CIDP is being evaluated, according to my immunologist, because I have ascending ( slowly ), polyneuropathy also, diagnosed. I may have to do further EMG, up to date, testing, and, possibly lumbar puncture, to check for protein etc. Previously, a few years back, I’ve had both of those procedures! I hate the thought of the lumbar puncture though, because the last time I had that, I got one of the worst headaches of my life! Right now, my IgG blood work is way too low, and I’m getting IV enfusions covering that ( Costing $4000.00 ),that, so far, is being covered by Medicare, and my secondary insurance! So, we’ll see how everything goes, in the next few months, for me! Meanwhile, I’m adjusting and recovering from a “Watchman” heart implant, so that I don’t get any more blood clots, from having been diagnosed with atrial fibrillation! I’ve already had 2 lacunar strokes! Again, thanks for sending me this valuable information! You are appreciated!!
@foundryrat743
@itsmeagain
Dear me. And I thought my situation was bad. Bless you for what you’ve been through.
I know what you mean about spinal taps. My first one was horrific-so painful. The second was a breeze and dr was done before I knew it. Fortunately no residual problems.
I’m not familiar with CIVD - what is it?
God bless and I pray for good results for you. Keep in touch.
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2 Reactions@itsmeagain Hello again! Thanks for being so supportive! CVID is an immune deficiency disease, that is considered relatively rare, roughly affecting one in 50,000 people, here in the USA, according to a recent. study that I read! Common Variable Immune Deficiency is what the letters CVID stand for! I-V treatment ( effusion ), of gammagobulin antibodies plasma, is the treatment, as it is for Chronic Inflammatory Demyelinating Polyneuropathy! My blood tests continue to show that my IgG levels are way low, so I am getting the effusion, although the dose prescribed for CVID is lower than doses given to people with diagnoses of CIDP, according to my immunologist! I was told that I will probably have to continue these effusions the rest of my life! Thanks again for being so helpful, and supportive!
I have been on 35,000 mg infusion of Gammagard for 7 years for CVID, sjogren's syndrome, and low IGg, IGm. It keeps me from getting so many infections that my body could not handle by itself. My onocologist/hemotologist infuses me every 3-4 weeks depending on the blood work. I also have monoclonal B cell atypical CLL trisomy 12 kappa and recently needed a double mastectomy due to invasive lobular carcinomas. He also gives me B shots. So...I have a lot going on.... Keep the faith and the smile and think positively....I think attitude works the best.
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3 Reactions@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
Sending you healing thoughts and some good news about IVIG. I also have Selective Primary Immunodeficiency (lacking IgM and low IgA) and get monthly IVIG infusions at the hospital for 1/2 day each month. Medicare and Plan G covers 100%, once the Medicare deductible is met. The retail cost of the medicine and infusion is $20,000 per month (!). It is covered for me because it is under the Plan B in-hospital administration. They also help monitor me when I have side effects (migraines). Hope this works for you. The infusions have been life saving and reduced my infections dramatically.
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