I am freaking out... I have been on IVIG for almost 5 years, and had several differnet insurance companies we have gone through during that time.. and now it is getting denied... I am a week late and already starting to go downhill.. I am seronegative (with LEMS being at the top of the list).. It saved my life when I crashed 5 years ago.. I was able to work, take care of kids.. though not at all like my "old" self, but at least I was able to function.. I have no idea what we are going to do.. has this happened to anyone, and what did you do? I don't want to crash like I did back then.. it took years to get to the good place I was 3 weeks ago! Healthcare is taking such an awful turn, it truly makes me sick!

I just went through this in the last few months. You are doing Hizentra right now, right? If so, yes, they will deny it. There is no getting round it. This isn't hopeless, though. Simply have the doctor order Gamunex, which can also be used sub q. Mine was approved that way, although not immediately.

The rest depends on how persistent and skilled your doctor is. Mine is very persistent and went through 3 rejections and 2 face to face peer reviews before I finally got my approval. Unfortunately that all took time, so prepare yourself. Always make sure your doctor goes for the expedited appeal or the paperwork will sit around on someone's desk for weeks.

Try to stay calm. Consider a bump up in pred during the wait. Contact me as much as you need. I know exactly how you feel. I am so sorry you are going through this and yes, it is so, so scary.

Hugs.

thank you so much for your reply.. it makes me feel better that you got yours approved in the end! It doesn't make me feel better that so many people are having to go through things like this more and more with all the insurance changes being brought on
Interesting about the hizentra! Why is that, do you know? Is it more expensive? My doc did the Peer to Peer today (I got the rejection letter earlier this week).. and then they told him today that it was denied after the peer to peer.. the crazy part about it was that it was a hematology/oncology speciality doctor doing the denying! My doc said that he would appeal it (I assume they do the fast appeal, since this one took less than a week, but I'l double check), and get a neurologist on the case this time instead, but that he wasn't optimistic.
I am already feeling weaker this week, my eyelids aren't closing all the way at night, double vision and my face just doesn't look "right".. joy.. i've been so thankful to be well controlled recently. It took almost 5 years to get to this point, and i'm terrified of crashing ....
I'm waiting to hear back about the treatment plan while we wait... on top of that, I had my rheumy apt this am and I need to officially go see a hematology/oncology doc since my WBC has been below 3.0 (as low as 2.1, and currently 2.6), for the last 10 months or so... so immunosuppresants while I wait aren't even an option... not a grand day on the medical front... but hey at least I can swallow and breathe, so i'm grateful for that.. and hope to keep it that way!

They will not approve Hizentra for anyone who does not have immune deficiency. That is the catch. Your doc might as well chunk that appeal if he/she is appealing for Hizentra. Switch to Gamunex as that is approved for tons of other things besides immune issues. Am I remembering correctly that you go to UTSW? If so, private message me and I will give you the name of my doctor and you can have yours consult mine about it. Also, do you happen to have BCBS? If so, they will invariably have to approve the Gamunex for that since they have approved it other patients (myself included.)

Hang in there.

So sorry you are dealing with this. I am hearing more and more about people being denied treatment . I guess they'd rather pay the hospital bill when they make these type decisions. I really don't think the people making them are aware of the consequences of no treatment.

Thanks Limpy.. it is awful that it's happening to so many people.. I honestly don't know what is going to happen, which is just terrifying.. I am feeling weaker today.. and just praying I don't pick up any respiratory illnesses while we are in this awful limbo..
I agree.. I don't think they understand. what's so frustrating is that it was a hematology/oncology doc that denied it.. not even a neurologist.. so he overrode a neurologist at a great neuro facitily.. grrr... I am going to be writing a letter to him personally.. however, he may get a lot of those and not even open it..... frustrating.. it's a helpless position to be in
how have you been??

Have you written an appeal to your insurance company yet? Is plasmapheresis a possibility for you? That's what's kept me going. It's been awhile since we last spoke, but I'm now doing plasmapheresis every other week and while I'm nowhere near normal, I'm much closer than I was before. It's keeping me reasonably active and breathing well.
I get that plus 3,4 Dap and mestinon.
Have you been rechecked for VGCC antibodies. I just had another single fiber EMG in December that showed abnormal and blocked nerves. This was my first positive EMG since diagnosis in 2013. I had the VGCC antibodies already.
If they think you have LEMS, would they consider a trial of 3,4 Dap?
Have you seen a doc familiar with LEMS?
Doctors have to be certified to be able to prescribe it, though, since it is not FDA approved, but given on a compassionate use basis.
Let me know if you need help finding a doctor with prescribing privileges.