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Ivig Therapy Suggested


Psalm 23

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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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Interesting that he suggested the IVIG for you. When I saw him (I think we see the same doc in AZ) in Feb, I was asking him about it as my SEID (ME/CFS) doc is recommending it for me. I have an appt with my ME/CFS doc (in CA) in a couple weeks so will hopefully get more details then.

I know Arizona Girl uses IVIG regularly and gets some positive results with it. You might want to pm her.

Let us know what you decide please?

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I have an autoimmune disorder that causes large fiber neuropathy and have used Ivig for almost three years now. I get numbness and weakness if I don't use it. I definitely notice a difference with it and have done ok so far. I developed Pots after the onset of this first disease so in my case it didn't do anything to prevent the onset of symptoms, nor has it improved any of my Pots symptoms. If your doctor thinks it may be helpful I would give it a try to see if it helps bring any relief. I would check your insurance though because you're right that it's very expensive and it's only approved to treat certain diagnoses. Also if you do it, something that's helped me not get headaches, which are a common side effect, is to drink 6-8 glasses of water, (straight water no gatorade etc) two days before the infusion, during the infusion and even a glass or two the next morning. I also get a bag of saline after the Ivig is done which helps too. Good luck, I hope it helps.

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I wish that I had something constructive to add Janet.

Having become familiar with you, I am certain that you will take a reasoned and sober approach to making a decision.

This will be on my mind.

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Hello everyone. Thank you all so much for your responses. I really appreciate it.

Sunshinegirl,

I have a very long and complicated health history which would take pages to go over. I wouldn't even know where to start. My profile gives a bit more information about my journey. Basically my Neuros objective at this point is to address autoimmunity issues which could be the driving force behind some of my symptoms.

Chaos,

You're right. It is interesting that Dr. G. ( I'm sure we see the same doc ) suggested IVIG. I was stunned. I have never mentioned it before as I didn't think I had any diagnoses that would allow for it. When I first saw Dr. G. I had in addition to many other things a diagnosis of SEID ( ME/CFS ). I had been given that diagnosis by a local Neurologist and a local Rheumatologist. Then I was referred to UCLA and re diagnosed with it by another Rheumatologist and then several years later was referred to USC to see another Neurologist and was again diagnosed with it. When I ask Dr. G. about this diagnosis he just says we don't know much about it. He also says he's not removing it from my list. He has added on so many other diagnoses though that now I wonder if I do actually have it except that I still have debilitating fatigue, PEM, and unrefreshing sleep in spite of APAP use. In any event it was not factored in with his suggestion of IVIG. Based on my family history, my history, lab work etc. he is suspecting an underlying autoimmune condition. I have seen that IVIG is given off label for ME/CFS as well as a number of other conditions. I hope your appointment goes well. I hope you are given an opportunity to try IVIG. I will let you know where this all goes.

Clb75,

Thank you for sharing. I'm so sorry. You have very serious things to deal with. I'm so glad IVIG helps you. Yes. Insurance is a sticky business. I'm not sure yet how this will play out. I have original Medicare and no secondary coverage so I expect I will have to pay 20 % and I'm not really sure how authorization is addressed with Medicare. I have questions for the Hematologist who would be doing the billing.

Thank you for the advice on side effect preventative measures. Much appreciated. I have heard that headaches are pretty common.

gjensen,

Thank you for your thoughts and encouragement.

Katie,

Yes. In addition to those abnormalities my Neuro is adding everything together and coming out with the thought that an underlying autoimmune condition may be behind some of my symptoms. It's all so nonspecific though which was why I was so surprised at the IVIG suggestion. The eosiniphils will be rechecked in two weeks and the n-type calcium channel antibodies will be rechecked in September. I'm really curious what the results will be this time.

Many thanks to everyone for responding. I'm so sorry you all have to be dealing with such life altering conditions as well.

Janet

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Hi Janet,

I don't know about IVIG specifically, but there are copay assistance programs for many of the expensive biologics through most of the drug companies and also through several nonprofits depending on your diagnosis. You might want to look into this since you don't have supplemental coverage. That 20% could be very pricey. Good luck with whatever you decide.

Katie

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Hi sideofsalt,

Thank you so much for your well wishes ! I'm going to have to ask more questions and most important pray about it.

Hi Katie,

Thank you for the information, I will have to check it out. I have pretty much resigned myself to having to pay out of pocket for the IVIG if I elect to go that route. Aside from the expense of it I am somewhat concerned about the albeit slight but existent risk of kidney failure. Because of the loss of one of my kidneys to a large renal tumor a number of years ago I am very protective of my remaining kidney which I had some issues with in 2011 but is presently normal. I guess that was my reason for reaching out to hear about others experience with this therapy. If I could be guaranteed that it would make an appreciable difference with no risk I would jump on it but of course that's a non reality. Lol. Thank you for the well wishes !

Thank you both,

Janet

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Hi Janet,

Here is a drug company site that talks about their patient assistance program for their IVIg. Thought you could use this as a jumping off point for looking into the financial end of it. I can totally understand your concern about your kidney. I will keep you in my good thoughts as you go through this process.

http://www.privigen.com/professional/igiq-support-services/prescriber-patient-assistance.aspx

Take care,

Katie

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I'm not certain about this particular drug but when my son (11 now) was dxed with crohns last year, I looked at the cost of biologics and other expensive treatments and the side effects. For a child so young I was not willing to take the risks and there was no way I could pay for it. We were already in over our heads catastrophically!

So, I decided to treat my son with enteral nutrition because it is used widely in other developed countries and has NO side effects. When uses as a primary treatment of a disease, it is fully covered by insurance. He was in full remission in 2.5 months, put on 45lbs and grew about a foot. Because of the autoimmune component, he has to eat a low histamine diet when he does eat food. I'm certain he has mast cell involvement. All of my decisions grew out of a more in-depth understanding of the immune system and how it impacts so many systems if it is even slightly off.

Even though I don't have crohns, I have debilitating GI issues likely due to nerve damage and mast cell. When people ask me whats wrong, I tell them I am allergic to life and food. When I saw how well he did, I moved to a hypoallergenic organic protein shakes and vegetables for the most part. If I deviate much, I will be very sick.

To the issue of money: Depending on your situation, you may be able to get what I finally got for my son...long term disability. It pays 100% of costs or picks up the tab after your primary insurance. You may only get it if you cannot work and it is not dependent on your family income. Some states have it in easy access and others may not have it at all. I was so surprised that no one told me of this last year when I was drowning in debt! I thought it was only for those living in poverty and did not know that middle class people can have access to it to. If you are in a state that has it, no one will tell you about it and it is nearly impossible to get your application submitted. They will tell you to fill it out online but you cannot really do that because they intentionally make it so that if you fill it out correctly for this form of insurance....the submit button wont work. You have to print it and intentionally fill it out slightly incorrect and turn it in by hand. When they see that you have screwed up in the first 5 questions, they will be forced to input your information into the system correctly. When it is done this way, you can bypass a 6 month wait and get coverage in just weeks. This is when playing dumb is worth it!

I don't know if any of this information will benefit you.....

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Hi Katie,

You are such a sweet heart. Thank you so much for the privigen assistance link. I'm definitely going to investigate it and see if I would qualify.

Hi Sunshinegirl,

Thank you for sharing. I'm so sorry your son has to deal with crohns disease and at such a young age and for you having to deal with debilitating GI issues. I hear you on that one. I'm glad your son is doing better and you if you adhere to your diet. Your research into the inner workings of the immune system really paid off. What we consume does have such a huge impact on our immune systems and having an awareness of what triggers an inflammatory response or any kind of negative response is invaluable. Like you I have developed an awareness over time to what I am best able to tolerate in terms of diet. It's so individualized and subject to change at any moment. I went through a very strict elimination diet last year and learned a lot.

In regards to disability I am actually already on Social Security Disability. I had to leave my nursing job back in 2005 and was awarded disability benefits within three months of applying. After 24 months of being on disability I was automatically put on Medicare and removed from the Cobra plan my family was on. I carried the health insurance for everyone through my employer so when I had to leave my job health insurance became an issue. In any event my big mistake was in not seeking out gap coverage which you only have 6 months to apply for once you are on Medicare. I was so horrified at the time that I had ended up on Medicare that I never read any of the paperwork until it was too late. I wont get another opportunity to apply for secondary coverage until age 65 ( 10 years to go ). So I have gotten used to having to pay out more money than I would like. The cost of IVIG would definitely be pushing it to the limit though. I will have to make some inquires and find out if there are some other benefits I am unaware of. Thank you for bringing this to my attention.

Thank you both so much,

Janet

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Ok so, Medicare is different than Medicaid. Medicare leaves you with a doughnut hole of expenses but Medicaid pays in full. This may have been due to what your state offers or does not offer. Like I said, most wont tell you about the option of Medicaid long term disability. It may have been yet another loophole if you were at the age of 60 when all this happened as it is usually for those who are children when they become disabled or those who don't qualify age wise for Medicare. But you are only 55 right? So this may still apply to you.

When you were assigned disability, were you also assigned a case worker? If not have your Dr. write in his note that you need a case worker as part of your disability.

So heres another loop hole you might want to explore...its a leap but I would try anything. Do you have neurological issues that lead to brain fog or mishaps in understanding? If so, you might be able to get your dr to write a note stating this as part of your disability and then you can tell them that you did not understand that you only had 6 months to get gap coverage.

If you go to the Department of social services or human services and tell them you have disability but you need a case worker to help you understand what is going on...they cannot refuse you. They may be able to turn back time or put you on an additional state program that picks up the tab after the Federal Social Security/ Disability/ Medicare pays first.

So in the case of my son, we use my husbands insurance as the primary and Medicaid as the secondary. In this way, we have no co-pays.

What state are you in? I can research it for you and get you the answers so you don't have to be bothered. I already know the tricks of the trade and can usually get what I need in a week or 2 depending on how often the people answer the phone or call me back. I have done this for others as a "counselor" which I am...just not paid or as an "advocate" which I am just not paid.

I don't see any reason why you cannot have this fully paid for if it is deemed medically necessary or at least have everything else paid for in full. You have to fight for it, play dumb, or claim brain fog, depression, blurry vision...whatever kept you from understanding the concepts in that window of opportunity. They make that 6 month mark for a reason...so that most wont get in it! I think it is discriminatory against a person with a disability. Drs. cant even understand the rules and regs...let alone a sick person who is just fighting to get out of bed and eat!!!!!

Also, keep all of your receipts, including travel expenses, lodging etc...to claim towards your 10% for your tax deduction. If you have to pay for this out of pocket, you will likely exceed this minimum and you will get much of it back. Have your dr. write you a script for everything even if you cannot use insurance for it. As long as there is a script and a receipt, you can prove it was medically necessary and claim it cleanly if you were to be audited. The little bits add up...so everything that comes out of the pharmacy...lotions, potions, pads, medical tape...he can write it all on one script and put 56 refills on it for each week of the year. Just give him or her the list and the reason why.

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Hi Janet,

Here is the Google search listing for copay assistance programs for IVIg. Some of the resources are pdf files and I can't copy and paste links to those, so I thought just sending you the search results would accomplish the same. There looks to be some good resources in the list. Take care and Happy Easter.

https://www.google.com/search?ie=UTF-8&client=ms-android-att-us&source=android-browser&q=ivig+copay+assistance

Katie

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I use a brand called gamunex-c and they have a couple of programs. One covers part of the copay as long as you don't get the infusion at an outpatient medical center, which may apply in your case. I can't use that program, but the one I'm on gives you a certificate every four months after one year of infusions, as long as they are billed through private insurance. If you lose coverage you can trade in a certificate for a free infusion.

I understand how frustrating insurance is, I had to stop working and carried the insurance for my family too. It's a shame you have to lose your insurance just when you need it most.

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Hi Sunshinegirl,

Thank you so much for your offer of assistance. I am truly touched. I would never qualify for Medicaid. As embarrassing as it is for me to have Medicare at my age I am very thankful to have it in spite of having large co-pays.

I live in California. I'm quite sure there are no other benefits I would qualify for. I will make some inquiries this week just to be sure. From what I understand the government is pretty hard nosed about the 6 month rule. While it would have been nice if I were made more aware of that time constraint in the beginning, I should have actually read more carefully the material that was mailed to me.

I do definitely keep all of my receipts as I realize every little bit helps but thanks for the tips on capturing all of them.

Hi Katie,

Thank you for yet another valuable link to investigate. I think making an appeal to one of the drug companies is going to be my best option for increased affordability.

I had a lovely Easter Day with my family. I hope you did as well.

Hi Clb75,

Thank you for the information. At this point I don't even know what brand my Neuro would be ordering. When he brought the subject up it was so unexpected that I didn't ask many questions. I basically told him I would have to think about it. I did call my Hematologists office to find out how they managed IVIG and was told that they used a home health care agency. They don't give it at their infusion center for some reason. I will find out when I see him in a few weeks whether he will even be agreeable to following my Neuros orders. Hopefully that wont be an issue.

I so took for granted all the years of what I came to realize was amazing health insurance. I'm sorry you and your family have suffered as well with health insurance issues. It's certainly been a learning experience for me. I made the mistake year before last of selecting the wrong part D drug plan. It seemed the right choice at the time until I was prescribed Cromolyn which very quickly put me in the doughnut hole. For this year I pay a higher monthly premium for a Signa plan but have gap coverage which is amazing. I was actually on a senior HMO for a couple of years which was great but when my issues worsened and I needed to go back to Mayo I had to switch back to Medicare to be seen there. Yes. This whole insurance thing can be so much more complicated for those of us with more unusual conditions.

Many thanks to everyone,

Janet

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Sunshinegirl,

I just read your topic of this morning and appreciate all the information you made available to others who are seeking Medicaid. I will have to keep it in consideration for possible use if necessary.

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Hello again,

I can't sleep so I was doing some research! According to this information on medicare.gov, you may still be eligible for Medicare gap coverage. I'm not sure of your age (and I'm not asking) but it says that those under 65 on medicare due to disability can get coverage outside of the 6 month open enrollment if your in certain states and CA is listed. Maybe all is not lost on this issue.

http://www.medicare.gov/supplement-other-insurance/when-can-i-buy-medigap/when-can-i-buy-medigap.html#collapse-2239

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I'm sorry you were unable to sleep last night Katie but thank you so much for your research. I wonder if this is something new as I don't remember seeing this opportunity before. I have been talking to my hubby this morning about just this subject and had decided I would try and pursue the route of a late in the game Medigap policy but realized I would be at a disadvantage because my Internist of 33 years who I was seeing when I fell so ill and filled out my disability paperwork has retired and is long gone. Hopefully that wont effect my request. I'm 55 by the way. Lol.

Thank you from the bottom of my heart !! Yes. You are the best. I will let you know what happens.

Janet

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Sunshinegirl,

Thank you again for encouraging me to pursue the route of a late Medigap policy. After talking about this with my hubby and deciding it was worth fighting to get even though my Internist would no longer be available to attest to my incapacitated mental state I found Katie's link. So maybe this is my answer. I feel rather foolish for not being aware of this possible option in the first place.

Thanks again,

Janet

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Jan,

I know your still in the decision making process portion of receiving the IVIG, however, I just waned you to know your always in my thoughts and I'm always keeping my eyes and ears open for in hopes I may come across something helpful.

Anyway, did you ever find out if the hematologist has access to IVIG at his infusion center? Youd probably just be dealing with the nurses anyway ;) I'm on board with whatever you decide and my phone is on for you day or night, my dear friend..

Sarah

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Hi Sarah,

Thank you my dear sweet friend. You're always in my thought as well. I did find out from calling my Hematologist office the other day that they do not offer IVIG at their infusion center but through a home health agency. My actual appointment with the Hematologist is in two weeks at which time I will find out if he is agreeable to following Dr. G.s orders. I would be really surprised if he was not agreeable.Thanks to Katie encouraging me to pursue trying to obtain a medigap policy I have come to realize that I can still get Medigap coverage even though I am well beyond the six month mark. I'm still in the process of calling a number of health insurance companies and comparing offered plans and prices. It turns out the state really has no involvement in any of this. It's all about what the insurance companies are willing to do. Some of them turned me down, some of them offer only one policy and there is a huge range of prices. The plan I am most likely going with won't cover any expenses related to my preexisting conditions for the first three months so since there is not an urgency in receiving treatment I will wait until my coverage kicks in.

Thanks again Sarah. I'm here for you as well.

Hi Katie,

I am so thankful to you for encouraging me to pursue a medigap policy. I really thought all hope was gone on that one. Back in 2011 at Mayo's suggestion I tried to secure a medigap policy but was turned down flat by everyone. Now however one of the companies who turned me down in 2011 is offering me a policy. Apparently the way it works is once one exceeds the 6 month time frame even if you live in CA the insurance companies can decide if they want to offer a policy or not. Based on all of the phone calls I have made in the past several days there would appear to be no control what so ever in pricing or policies offered or not offered. I will be making a decision in the next few days. I have really been taking a big chance by not having any supplemental coverage.

Thank you so much,

Janet

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