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Psalm 23

Ivig Therapy Suggested

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Katie, thank you from myself and for Janet for doing all this digging & finding out such useful information, and for helping out such a good person and a good friend!

It surely does take a village doesn't it?

No doubt we've been a beacon on some pretty dark night nights for each other... Now Let's go get some relief for you Jan! :)

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Janet:

We battled insurance company for months trying to get IVIG approved for my daughter. They finally approved 10 doses. She has completed 8 so far and we notice no improvement from it.

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Hello jpjd59,

Thank you so much for sharing. I really appreciate it. I'm so sorry to hear that your daughter has not realized any improvement from the IVIG treatments she has received so far. What a terrible disappointment ! For what condition is your daughter receiving the IVIG therapy ? At what intervals is the treatment given ? I'm assuming since you've continued with the treatments that your daughter has not suffered any ill effects aside from I'm sure enormous disappointment and heartache. I understand there are several different types of IVIG. Which one is your daughter receiving ? I'm sorry for all the questions. I should have asked more questions at my last Neuro appointment but didn't so I am preparing early with a question list for my next appointment. I hope your daughter sees some improvement with the remaining two treatments.

Thanks again,

Janet

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Hi! After a bad virus in October, is have been in a Dysautonomia flare up ever since. It is so severe that I was forced to move home to NY with my parents so that they could help take care of me. Through many blood tests, I have been diagnosed with an autoimmune disease, even though it doesn't fit into any of the typical AID such as lupus, RA, etc. All signs pointed toward Sjogrens but then my lip biopsy was negative. Anyhow, both my Neuro and Rheum have suggested IVIG as the treatment to control the inflammation in my body. However, it was denied by Cigna as I apparently did not meet the diagnostic criteria. We now need to get a lawyer as the treatments cost approximately $10k a session and I'd need 4 sessions a month. I hope to hear that your ivig is approved and that you find some relief! As far as I've been told, although it may or may not work, the side effects are minimal and not life-threatening (nausea, migraine, aseptic menegitis at the most severe.) Good luck!

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Hi Michele,

I'm so sorry you are doing poorly. My situation is like yours in that my autoimmune component is not a specific known condition ( ironically though I have twice been diagnosed with Lupus by two different Rheumatologists and then undiagnosed with it by another ) so I have wondered if authorization will be an issue. I don't yet know how it works with Medicare. I should find out more next week. I did just find out that I have to wait until my birthday month which is July to obtain a supplement plan so for me if authorization is not an issue there will be a delay in even getting treatment. I sure hope through your lawyer you are able to get IVIG approved. I'm glad to hear that the side effects are typically not too bad. It mostly just becomes a question then of whether or not it improves symptoms. I guess the other question in my mind is if the treatment helps does it become a long term therapy as I think it is mostly given for symptom management and not typically viewed as a curative.

Thank you so much for your response. Please keep me posted. Good luck to you as well !

Janet

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Janet,

For what it is worth, I have hyperadrenergic POTS. Before I went to Mayo I had no idea about the hyperadrenergic part but we had just starting figuring out that I had an immune deficiency. Mayo docs told me to pursue the immune deficiency route because they felt that if my body was constantly having to fight immune battles, it would likely inflame my hyperadrenergic state. I am completely missing one IGG subclass and have specific antibody deficiency and the insurance approved my IVIG. I think that I have done much better with it...not sure if it is directly helping the POTS or just helping it indirectly because I am not sick nearly as much.

Also, just to give you an idea of how the insurance works, we had my son's immune system tested and, as far as numbers go, his immunity was worse than mine, but the same insurance company turned him down the first time. My immunologist sent in a letter of appeal with documentation of his decficiencies and they reversed their decision and approved my son for IVIG.

Good luck to you!

Stephanie

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Hi Stephanie,

Thank you so much for your response. I'm so glad the IVIG is helping you. I have seen that this therapy is approved for and seems to be successful in treating immune deficiency conditions. I guess it's impossible to know whether your PoTS itself is directly improved from it or secondarily. It sounds like your Mayo docs made a great recommendation on a successful treatment approach for you. I am thought to have an auto antibody issue which may or may not be behind my PoTS condition so a positive IVIG response would confirm autoimmune PoTS I guess. I am still a bit unclear about some things. I have more questions that need to be addressed. I am also still uncertain at this point how the authorization part will play out or how receptive my Hematologist will be to following another doctors orders. Tomorrow will be telling.

I'm so sorry your son has an immune deficiency condition as well. It's so heartbreaking when our children are suffering with health problems. That's great that through your Immunologist you were able to get IVIG approved. I so hope it improves your sons condition.

Thank you for your response and well wishes!

Janet

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Hello all,

Well, I had a great appointment with my Hematologist yesterday. He said he'll do anything he can to help me including signing another doctors orders and overseeing the administration of IVIG however as many of you had predicted authorization will most likely be a huge obstacle. My Hematologist said working with Medicare is much more difficult then working with a private insurance company. When the IVIG suggestion was made we did not discuss what if any of my various diagnoses would allow for the administration of this therapy. After doing a bit of research I don't see where I have any so I need to discuss this further. Maybe I am missing something. The Hematologist said the Neurologist would have to come up with some pretty convincing written arguments and documentation to support its use in my case. My return appointment to Mayo won't be until September so I'm not going to think about this possible treatment option until that time. My Hematologist did bring to my attention something I had not considered. He said at times he runs into an availability issue with IVIG and has to prioritize which of his patients receive treatment. That said I would feel terrible about depleting a limited supply of a therapy that others lives hang in the balance over. I think I need to explore what other treatment options there are for targeting a non specific autoimmunity issue that may or may not be behind some of my other issues.

Thank you for your interest and support.

Janet

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Janet, there is a thread about an alternative that has helped some, on this forum.

I find my protocol to be very significant. Addressing my immune system with DIET first and then low dose antibiotics and antimalarial herbs. Continuing the mast cell protocol. And my supplemental things. ---I'm mostly good!!!! Mine is definitely autoimmune related and I was offered IVIG too. Didnt do it.

Since I'm trying to be strictly lowfat, whole food vegan. The alternative supplement to IVIG (colostrum), I'm not using. I have in the past and found it to help pull me out of a bad flare.

Issie

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Hi Issie,

Thank you. I will check that thread out.

I'm really glad to hear that you are doing so well and your regime is working for you. Since I am not dealing with a protozoan issue low dose antibiotic therapy has never been suggested for me. I did however spend 6 years on Plaquinil for an erroneous lupus diagnosis. Interestingly though I did notice after about 6 weeks into taking the plaquinil that my rashes disappeared and my fatigue improved as did my shaky legs which has caused me to wonder lately if I would have been better off just left on it if it was helping some other kind of autoimmune issue I am dealing with. Something else to bring up in September. As you are doing though I think I would try antimalarial herbs first. I believe I do recall you mentioning a long time ago that IVIG had been offered to you as a treatment option but you had declined. I can't remember why though.

I'm afraid I haven't quite gone the vegan route as yet but have adopted more of a low fat vegetarian diet. Actually Dr. G. recommended this fantastic restaurant called Greens in Tempe that now my hubby and I always end up at when we are out that way.

I have never really considered colostrum as a treatment option. I guess I will have to read up on it. My Ketotifen just arrived in the mail today so that's my newest treatment to try. I hope not to have any issues with it. Have you tried Ketotifen Issie ?

Thank you,

Janet

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No I haven't tried ketotifin. Is Dr G using that along with GastroCrom or as a substitute ? Is it any cheaper in price? Does it still have to be ordered from Canada? I tried going off GastroCrom and couldn't do it. It is still very necessary for me. I also tried to stop the doxy antibiotics and antimalarial herbs and those are also necessary. Dr Fry uses Plaquinol with some. But hasn't with me. He said he has to check to see if a person has a certain enzyme to break it down before he puts someone on it. It could make someone really sick. His suggestion as an alternative for it was curcurmin. That was too strong for me and I went back to my turmeric.

Thanks for the tip on the vegan restaurant. I will have to check it out. I also don't eat soy. So hope there is something soy and gluten free there. My vegan diet has been a big help. Even my hubby is now mostly vegan. He was skeptical to start with. But now encourages me to stick with it and anyone with health issues he tells them to ask me about my diet. It has saved my life - literally. Not easy to do - but well worth the effort. There is a Whole Food store on Scottsdale road close to Mayo and you can eat vegan there too. It's not cheap. But it is good. Chipotle is another option and Sweet Tomatoe and ordering sides at Chilies. It can be done, just takes some planning. There is also a place called Chompies that has vegan split pea soup.

Issie

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Issie Dr. G. ordered the Ketotifen to be taken along with the Gastrocrom ( Cromolyn ). I'm taking Ketotifen 2mg bid and 300mg qid of the Cromolyn daily. Unfortunately the Ketotifen is not inexpensive. I paid $ 114 for 200 ( 1mg ) tablets and yes it still does have to be ordered with a prescription from a Canadian pharmacy. Of course after I ordered it I found a less expensive pharmacy so if I refill it I will most likely go with the other pharmacy. I imagine once on the Gastrocrom it's difficult to get off without a return of symptoms. It's certainly not convenient but I am so thankful to be able to take it. I have found it to be extremely helpful. Dr. G. had actually mentioned increasing it to 400mg qid but I think my lack of enthusiasm kept the dose at 300mg. If the turmeric is helping that's great. It's way better having success with that then taking Plaquinil and having to see an ophthalmologist yearly. I took turmeric as well as a number of other supplements for years but didn't notice a difference in my symptoms so I discontinued them in lieu of other supplements some of which may also be discontinued as I feel no different and it all gets so expensive. That's interesting about Plaquinil and the need for a particular enzyme to break it down. I guess I must have that enzyme as I never had any side effects while on Plaquinil.

I'm sure that restaurant must have had something soy and gluten free. I'll see if I can attach a link with their menu. Thanks for the restaurant and eatery suggestions. I have never actually been in a Whole Foods store. I don't know why. We always end up shopping at Traders and Sprouts which are also close to Mayo. I'll have to check out your suggestions next time. Yes. Dietary considerations and food choices are huge.

Janet

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Thanks for the info. A few years ago, I asked Janie (Dr Gs nurse) about ketotiphen. They didn't know about it then. She did some quick research and I stuck with the GastroCrom. I don't have as good insurance now and trying to find an alternative.

Issie

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You're welcome Issie. How interesting that you brought up Ketotifen even before Dr.G. became familiar with it and started prescribing it. Thanks for that. I have been reading of others experience with it on one of the mast cell forums. I hear you on the health insurance issue. I don't have very good health insurance as compared to what I used to have. I hope you get something worked out.

Janet

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Janet, I do not have anything helpful to add. I did want you to know that I have been following with interest.

You mentioned a few posts back about a concern with supply. I would not let that be part of my decision making process, and separate that all together. It is the suppliers concern to be concerned with supply.

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Hello gjensen,

Thank you for your interest and concern. I guess part of my concern over supply is the nurse in me coming through. Lol. Difficult to get past that but I'll try.

I hope you're getting some answers and improvement in your condition gjensen. I know it seems like such baby steps some times but improvement is possible.

Janet

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Yes. I now run the largest group of autoimmune and autonomically dysfunctioning people in the world. Almost 2,000 now. About 1/4 of the members have at one time or another been on IVIG. Probably another 15% has been denied it. Out of the 500 or so that have taken it, it helps about 30% with autonomic dysfunction. Costs $15,000/month at least. Through medicare you end up paying bout 80% through private insurance or obamacare you pay a co-pay or less then 10%. That's why I haven't switched to medicare yet. Both types are very hard to get approval for. I had 4 top doctors all try over the last 2 years and all failed so far.

There are pretty bad side effects with ivig. The best plan is to do ivig maybe 3-6 months until you get benefits from it and then switch to high concentration sub q IG. That's what many CIDP people are doing.. Immune deficiency people get much lower ivig doses and thus less side effects..

Hope that helps

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Thank you so much for your response RichGotsPots. I really appreciate the information. After posting this topic I spent a number of hours on the phone with different insurance companies and brokers in an attempt to obtain a medigap policy as the IVIG copay cost is beyond me, assuming I could even get approval which seems slim at best. Everyone I talked with had something different to say but in the end regardless of which state I lived in preexisting conditions were factored in so I was turned down flat. I was told my next opportunity to sign up for a guaranteed issue medigap policy would be in 10 years. It seems so unfair to me that all the rest of the population have benefited from Obamacare in terms of preexisting conditions no longer being an issue while the disabled population still have that issue to deal with.

Anyway at this point I have resigned myself to having to wait until my next appointment and discuss what other possible treatment options are available to me.

I'm so sorry you have been denied an opportunity to try IVIG. I know it's hard not to wonder whether life would be different with this therapy. I hope your persistence pays off and you eventually get it approved. I would love to hear that you were able to get it approved and had great success with it.

Thanks again,

Janet

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Medigap has a flaw/black hole clause when it comes to covering very expensive drugs or treatments. Basically you have the standard that covers 80% then you get a medigap part C plan that covers the rest of the 20% minus co-pays and deductibles. Then you have part D drug plans. The drug plans are where IVIG falls under because the IVIG bag is ordered from pharmacies, then administered at home by a special nurse, in a clinic or in a hospital. Part D has the flaw. I called like 5 different companies and they all don't have a clue until you explain what IVIG is, then they figure out only a tiny bit is covered? It's a real crime!s

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That's really interesting ! I had no idea. I assumed the IVIG expense would be covered by the medigap policy not the part D drug plan of which I have an excellent Signa plan with gap coverage. I actually called my drug plan about IVIG a while back and you're right they had no idea what I was talking about so I assumed it fell under medicare and medigap. I have grown accustomed to having to pay out my 20% ( actually 30% when I go to Mayo ) but I have been fortunate and have not incurred any really huge bills so far. IVIG aside though it is a bit scary to have so much exposure which was another reason to once again pursue the illusive medigap coverage because who knows what the future holds in terms of medical expenses. My big mistake was in not acquiring a medigap policy the first six months of being on Medicare. That first six months is a guaranteed issue time. Maybe bringing my mistake to light will help others avoid my unfortunate situation. Although now we know these plans have big flaws built in anyway. How frustrating.

Thanks so much for the information. I think I need to talk with my Neurologist about how we would even get this approved and my Hematologist again about billing information. He does his IVIG infusions in the hospital so I suppose that makes it even more costly. Of course the real cost factor though is the immunoglobulin itself. I'm going to call Signa again as well. Looks like I need to try and get more information.

Thanks again,

Janet

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The one way around the Part D may be to only get your IVIG in the hospital because then there may be a shot as getting it covered as a doctor procedure. Also I believe 2 years ago there was a big big problem were Medicare required all IV infusions in a hospital. That caused a lot of clinics to close. So it's really tricky. The other alternative is to get Plasma Exchange which is only in the hospital and is a procedure and would probably be completely covered..

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It does all sound very tricky. Having it done in the hospital would apparently be my only option anyway as that is the only place my hematologist orders it be administered. He does have an infusion center but not for IVIG. His practice is actually part of a cancer care center which is an offshoot of the hospital across the street. Even If the IVIG were to be administered in the hospital I wonder still if I would incur the 20 % copay. It sounds like maybe not ? My Neuro did not discuss plasma exchange as a treatment option so I'm not sure about that one. There were a couple of other treatment options brought up but I am embarrassed to say that I did not write them down and forgot what they were. So many things were discussed at that appointment that I was overwhelmed. I did actually go through the patient portal and try to find out what the other medications were but didn't get that question answered so at this point I am just looking forward to my next appointment which won't be until September.

Thank you,

Janet

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Hi Janet,

Well, I am very interested to hear about how this works out for you. I am waiting on some biopsies to see if my POTS is neuropathic. I already know I have autoimmune issues. If you find out what the other treatment options he mentioned are, please let us know, because I am looking into my options as well.

Cheers,

Nicole

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Hi Nicole,

Yes. I will definitely give an update and provide that information when I have it. I'm afraid we will have to wait a while though. I'm glad you were able to have biopsies done and will be getting more information soon. The more information the better.

Janet

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I've had 3 ivig's this year and am getting ready for my 4th. For me it has helped get me out of a "vegative" state so to speak and keep me from it so the risks are more than worth it to me. I still don't have a clear diagnosis (or 's) since it may be multiple things but since my body has some response (it's no miracle cure for me) to the IVIG it's the go to thing when things get bad, like now.

I'm sorry you have to deal with insurance crap. Last thing we need to deal with when trying to get healthy! Hope this avenue works for you! If not I pray you find one that does!

Hugs

Well I had an appointment with my PoTS Neuro a few weeks back and in addition to many other things discussed was very surprised when the subject of having IVIG therapy was brought up. You can see from my signature what my various diagnoses are. I wonder have any of you with diagnoses like mine had IVIG and have you realized any benefit from it ? For me having it done locally ( home health agency ) would require that my Hematologist ( who I see in three weeks ) be agreeable to signing orders written by my Neurologist because I live in CA and my Neuro is in AZ. I have much to think about. As you all know this is a costly procedure and not without risk and sometimes without any benefit.

Thank you for your responses,

Janet

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