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Living with Polyneuropathy CIDP, GBS, & CMT

IVIG shortage reported in Wall Street Journal

Hi Everyone,
Wondering if anyone has been denied treatment because of this supposed IVIG medication shortage reported in the Wall Street Journal last weekend? It is now August 13, 2019. Does anyone have any idea if this is a real shortage or one the insurance companies dream up? It is supposedly a manufacturing shortage and not a blood donation shortage, as it apparently takes a long time to produce the IVIG medication even after enough blood donations are received.
Anxious to hear from everyone…

Hello Avon, When I reordered my supplies for my infusions I was told it was a blood shortage, however, so far, I have still been able to get my infusions.

My next door neighbors son was told University Hospital at Stony Brook, NY said they were out and were going to give him some other kind of medication. Thanks

I have had close calls with Privigen, the only IG that works for me. My infusion center will order from their pharmacy supplier 2 weeks before my infusions and I will arrive on the day of my first infusion. Not long ago, I had to wait an extra day for my infusion. I don’t know what the results will be for me if Privigen gets leaner. The shortages are confirmed but last week I read where the availability is increasing. The cause of this is Doctors have learned IG works for other ailments and they are prescribing it for off label use - in other words, for use not approved by the FDA. I wrote a letter to the pharmacy that supplies the infusion center for the hospital I attend for infusions demanding I receive my IG before other off label users. If you have been diagnosed with CIDP, stick to your guns as the shortages are real.

Thanks Skiptech. It sounded real as the shortage is with the manufacturers, not the providers, so the article stated. This is a good blog to see how the CIDP sufferers can best work with the shortage. It sounds like a fair conclusion that others are asking for the treatment for other ailments since the manufacturers allow for higher need and increase production like 10 to 20%. And, if someone is paying cash for this medication, it is probably preferred than the discounted insurance company rate. The other thing I learned reading the NIH and CDC websites on vaccination injuries is that the CDC anticipates a significantly higher rate of vaccine injuries starting back in 2016 and going forward because of all the new vaccines being created, including the ones for children, teens, and adults, with some state governments now forcing vaccinations regardless of religious objections. I was hoping the blog could narrow down where & what states have shortages and what resolutions people are finding. This would help those of us with acute CIDP in finding alternative sources for medication if they encounter problems. Anne/Avon

Anne?Avon,

The only other effective, and I don’t really believe it, is large doses of Prednisone. It was suggested to me a year ago and I said I would try a small dose along with my IVIG. The Doctor went for it. I go for another evaluation next Tuesday and I feel I have made progress in some areas but not all. I’m not complaining, just reporting when I see him. I don’t have a problem dealing with it all. I’m a happy man.

Skiptech

The shortage is real, and was conveyed to me about 1year ago. Doctor switched me to privigin, seemed to work fine

We live in Scotland, UK and my husband, who has CIDP, has been having Kioveg infusions for 6 years now. We were warned last year by our neurologist that there was a concern about the supply of Kioveg and last month it was confirmed that his infusion was the last he would be having of Kioveg. He is due for his infusions next week and will be having another product then. We are not sure what it will be but he is obviously concerned that it will not be as effective for him. We are just keeping our fingers crossed for a good outcome.

I live in the US, in Connecticut. I take a brand now for 6 months called Privigen. The Privigen consists of one 20 g bottle of immunoglobulins with 250 mmol/L of L-Proline. It is manufactured by CSL Behring (Australia). I initially had 1 original month of treatment of Gamunex brand and that worked really well as does the Privigen. With the Gamunex, I also had an IV of 120 mg of steroids. Individually and together, they work well. Not to worry in Scotland, there are other very good brands and manufacturers. Sorry to hear you too are hearing of shortages. This is beginning to sound like a global issue and not a local issue in the US…

My daughter lives in Phoenix. She has CIDP. Her neurologist of the last 2 years decided 3-4 months ago she doesn’t need IVIG. Then seeing the results of no IVIG has tried lower doses over 3 weeks, as opposed to every week. Yea. This has been a nightmare.
She finally got in with a new neurologist. This young lady Dr doubts the diagnosis of CIDP and has my daughter going through an extensive series of tests, the latest spinal tap, to rule out other possibilities. Of course test results won’t be accurate while taking IVIG. Meanwhile my daughter has gone crossed eyed and is living life on a couch because of fatigue and pain. I know you all understand scenarios like this.
Sara said the new lady neurologist commented about the cost of IVIG. Like it is taking a penny out of the Dr’s pocket. My thoughts are the ‘word’ has got out to the neurologist reduce or stop prescribing IVIG.
Who knows about any of this stuff for sure.

Hi Steve in Florida,
From my own personal experience, i was diagnosed 11 months after onset and by the 9th specialist i saw. I worked full time while visiting my dad every day in the hospital or nursing home 1 hour away during the last few months of his life. I collapsed, mostly from the CIDP exhaustion. I know what exhaustion is.
I do not know the skill level of your daughter’s doctor but will share how i was accurately diagnosed from the start. My illness was so bad i was boarderline walker and crutches at time of diagnosis. The doctor first does a nerve muscle test on feet, legs, hands, and arms. CIDP only affects the limbs but also all the nerves in those limbs communicating with the brain. I had what was called dropped foot when i couldn’t raise my foot with the ankle muscles. I had no nerve muscle response from my calf to my toes in both feet…lightly in my hands and wrists. From there, if there is no nerve muscle response as i had, they do about 50 blood tests to rule out other potential illnesses or diseases. Everything else in my blood tests were normal leaving me with the CIDP diagnosed illness. If your daughter did not have these tests, this is a problem. If all her tests were normal, she probably could not have CIDP. If inconclusive, they do more of these other tests…spinal tap, etc.
If you want to help your daughter, find a way to get her to the best hospital in the state, for insurance purposes, and get a brand new opinion. If there are no great and highly rated hospitals in the state, get her to a neurologist in California or at one of the best hospitals in the country like Mayo Clinic, Columbia in NYC, etc. Note these doctors have a waiting time of 3 to 6 months for appointments, so don’t wait 1 more day. Be aware, if your daughter does have CIDP, early diagnosis is key to being able to achieve remission, and, the damage she incurs to the nerves in her limbs is not curable. The nerve damage is permanent, possibly confining her the rest of her life. The myelin covering the nerves can heal, but again, not the damaged nerves. The nerves in my left foot actually exploded with extensive bleeding under the skin. If i ever achieve CIDP remission, i will still have some permanent nerve damage and the associated pain for the rest of my life. Be sure to inquire how she got the illness too and if she knows. You can read more about that online. Yes, if there is a shortage nationally or globally, i presume those without firm diagnosis will surely suffer the most.
Hope I’ve helped guide you. Avon in CT

Thanks Avon. Sara was 27 when the nightmare began. That was 4 years and 1 month ago. She initially was diagnosed with GBS. Worse case, completely paralyzed and intubation for almost 3 months. No warning signs, it began with a thought she had a bad flu, so she went to the ER. Given shots of Cipro and sent home. (This I am convinced is what started it all!!!) Two hours later at home and 911 back to hospital.
9-10 months later all the wonderful amazing recovery stories we heard and read about didn’t happen. EVERYTHING got worse. We thought she was going into full relapse. Then we hear about CIDP. And IVIG started.
Anyway, I’m very knowledgeable about CIDP. The ‘CIDP experts’ according to the GBS Foundation website in Phoenix could careless about patients that have been previously diagnosed and are being seen by other neurologist. Disappointing and frustrating. Heartbreaking.
Sorry. It’s rare I get on forums, or comment, although Sara is active on the FB CIDP groups. I read these posts occasionally. This one caught my eye about IVIG shortage.
Thoughts of peace for you. Sorry for all who live with these horrible diseases.

Steve, I learned the following information about the time I was diagnosed. I forget exactly where I heard this but I think it was from the nurse at the hospital infusion center I had started with…so no names can be mentioned. This nurse literally told me that neurologists having patients to prescribe IVIG for is a big money maker for: the doctor, the medical practice that doctor is in (if in a group practice), the hospital or facility where they are being treated, and the hospital gives a kick back to the doctor for all those patients they get to their infusion center. It is a big money machine. So yes, you are absolutely right, very few doctors care about the patient and will look strictly at symptoms and decide from there what to do and/or prescribe. I am really puzzled through by your comment about once diagnosed, they refuse to provide the appropriate care. The doctor still gets the financial benefit of prescribing the IVIG. The one disadvantage is that a lot of insurance companies only provide the first 5 treatments in the hospital and they have to have treatment via a visiting nurse service and IVIG provider. Then, that doctor does not get the kick back of the hospital treatments for IVIG treatment in hospital. I am thinking that with possibility of global IVIG shortage, that doctors have been informed by the hospital of the shortage and so all of their patients they want new patients who go to the hospital for those first 5 treatments. If they can find patients who can pay themselves or patients who can have all their treatments in the hospital, this is financially better for the neurologist. This is the only thing I can think of.
Therefore, I think it is best if unhappy with one’s current doctor to find another. There will be better ones out there.
The initial visit should be based on the fact that Sara is looking for a new doctor. My CIDP was definitively triggered by a vaccination. I tried to sue my doctor who gave me that vaccination, but the doctors are protected by the government. I would therefore strongly recommend that you be sure to document everything, when it happened, dates, times, how it happened, and call an attorney. There is a statute of limitations to deal with too. An antibiotic injection is not a vaccination where the government would protect the doctor.
The other thing I would comment on is the immediate reaction to the shots of Cipro. I understand from my readings that GBS is really profuse and even more rapid than CIDP, but given the fact that she responded so adversely in 2 hours’ time, I would have to completely agree with you. I would strongly recommend reading the CDC website about GBS. There may be some answers in there. I would also read about allergic reactions to antibiotics given via injection. You will probably find some info to support issue with fact that she worsened from the Cipro.
I had to change doctor’s myself after the first 5 hospital treatments of IVIG. That was in December of 2018. I then had the same insurance policy for 2019. When my doctor prescribed treatment through the visiting nurse service (a IVIG Speciality Pharmacy) then denied the doctor’s prescription. I can only assume it was because my doctor who moved practices in January 2019, both she and the new hospital she was affiliated with were out of network with my policy, thus only covering 60% of care and the IVIG medication buy on my behalf. It was really my insurance company with pharmacy that denied my benefits. It then took me another 3 months to get established as a new patient with Yale Neurology in CT, then another month to get set up with a visiting nurse service. This worked. I started up treatment the last week of March 2019 after being forced to miss 4 months of treatments. The challenges are unforgivable but it’s how our society works.
Please keep in touch, email me if you find another other clues to her sudden onset and response to Cipro, let us know how Sara is doing–then and now–and how else the chat members may be able to help. I will be anxious to hear from you. Kind regards, Avon
I

So glad to hear it! Avon

In Queensland, Australia my four weekly IVIG of Privigen continues to proceed without any supply issues (as far as I am aware). I am sorry to hear of issues occurring overseas.

Thank you for your thoughtful reply. Sara is on her fourth neurologist, this new one is the dr uncertain of what the actual disease is.
Sending you thoughts of peace
Thanks
Steve