Abruptly stopping Ivig

This is such a wonderful discussion board ! Thank you to all in advance.
My journey with CIDP has been a ling long one.
To make a long story short, I have been receiving IVIG since 2008.
I get it every 5 weeks.
My husbands employer just changed Insurance companies. We have never dealt with this particular company and they are making it very difficult to approve my IVIG.
I am on seven weeks without treatment and am starting to feel the symptoms.
The numbness and tingling the weakness.
I have been in touch with my neurologist however he is on vacation until Thursday.
With tomorrow being a holiday I have to wait.
Out of pocket, one treatment would cost me $35,000.
Not happening!
Do you think this can wait until Thursday?!
And once the neuro Deals with them on Thursday, I still have to see if the insurance will cover it.
My hands are tied and I have no idea what to do.
thank you all in advance

Not a great way to bring in the New Year.But I don`t think you really have any choose but to wait till Thursday.Good luck with the insurance company.I hope every thing works out for you and you start your IVIG treatments again.

Thank you John!

Sounds very frustrating. Hope you can get back into your scheduled treatments soon.

Try getting in on the nurse review board with a chronic illness most insurance companys have them. For my daughter who has had this since 2009 and two insurance changes through her dad this has helped get everything she needs.Good Luck!

Although it is less commonly done the correct way, IVIG is best tapered off than stopped abruptly, in order to prevent relapse or additional abnormalities of the immune system. However, since you are on a 5-week treatment interval, I think that although you may have a gradual increase in symptoms, it is not dangerous for you to wait another week.

With that being said, the infusion companies often have charitable programs which will cover your copay, or cover you between insurance plans, etc.. These often take into account your total income minus ALL of your expenses, so it is very easy for most people to qualify (they made a bundle off your insurance company payments before the change!).

Good luck to you - Hope that all turns out well. May we all be protected during this socialization of healthcare!!

You are all great! Thank you!!
My main concern is a relapse. I can deal with the uncomfortable feelings, but im constantly worrying that any minute ill be going to the hospital again.

Any mention of the word “chronic” and the insurance companies will NOT touch you in U.K

If you have your medic call it a neuropathy…which it is…and poly…meaning many…you might do better. It is not telling a lie…just wording it differently. My insurance is roughly 500 dollars a month…and I have had diddly squat from them in years. We do have N.H.S though…set up in 1949, which we pay into all our working lives,via our taxes, so now I get my IVIG every 4weeks free on a day ward with lunch provided.

I did 8 weeks without meds and was fairly okay 3years ago…so don’t worry too much…that just causes stress and the body goes bananas!
Good luck.



Thank you Happy!

I'm sorry to hear about the delays in getting treatments. I've been there. My suggestion to you would be to work closely with your neurologist and remember that no one better than yourself, knows when you are reaching the critical stage of the demyelination. My neurologist has put me 'in hospital' at that point to at least get me the IVIG treatments that I need as soon as possible. The hospital then fights it out with the insurance company to approve the treatment. No one likes going into the hospital, when you can get treatments out patient, but until the medical industry understands how critical it is to get these treatments once your body starts going downhill from the demyelination, it will at least get you the treatment you need. Thankfully, this problem has only happened twice for me and I am now able to schedule my treatments and get the proper authorization for the hospital while I am still able to function. I've been dealing with this disease since 2012. I hope this helps... It always amazes me how insurance professionals cannot look up CIDP and see that IVIG is the treatment of choice. Unfortunately, it seems to all comes down to the money. Hang in there. I hope you have better luck with the insurance company going forward..

Great advice!!! Thank you.

Have you received an official denial from the insurance company, they are required to make "timely"decisions. They count on patients giving up after a denial, this is how they increase their profits. I do know that stress throws my symptoms into overdrive and I try to keep that in mind and in control during my communications with the insurance. When you call them document EVERYTHING! (date and time of the call, phone number and name of who you spoke with, and of course the key points of the conversation) Have you tried contacting your area's insurance commissioner? I did like the one suggestion of going to a hospital, try to make it a non-profit they receive charitable funding. Peace nancy

I once "pushed" the interval between IVIGs, and got pretty weak. My neurologist spoke very strongly to me, and said not to let that happen again. He told me that when you allow yourself to get very weak, you might have some permanent damage, and not recover everything, even after you do start IVIG again. Fortunately, I had no problems with my insurance, so I could schedule a treatment on my own any time I needed it. So, I made it a point to get in whenever I started to feel weak.

Having said that, I did gradually taper off my IVIG, and my last session was over 6 months ago. I think that may have been possible because I started Imuran (an immune suppressant) months before that, and it may have taken over from the IVIG. Or, I may just have gone into remission. There is no way to know for sure.

Good luck.


Thanks Bill!

I had to deal with something similar to this from 2011 to 2012, but it did get covered. The hospital where I was getting my infusions almost would not give me my treatment because of it. I did not change companies, or plans. The plan appointed a new administrator. Our insurance is self paid by the employer, the plan has not changed for years, but they choose different companies to administrate it. Sometimes it is United Health sometimes BCBS. And, then it gers all weird because ppl do not understand that this is a plan that is not different no matter which companies name they see on the card. However the really fun thing now will be how I will ever get treatment due to Obamacare. Our premiums are going to almost triple thank you. I am not sure what to do. I am sick to my stomach over it all. "It will not affect existing plans in place" Yes it did. It destroyed ours.

Sorry, I did not answer your question, I rattled on.