[bny806]

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!

[4-eyes]

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.

[bny806]

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!

[4-eyes]

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.

[limpy]

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.

Originally Posted by bny806

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!

[bny806]

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??

[limpy]

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.

[bny806]

I'm glad your doing ok Limpy! Wouldn't PEX be even more expensive than IVIG (insurance co like it even less)? did the IVIG not work for you? I cant' remember!

I had the VGCC ab checked in the beginning of this. .. so it's been probably 4 years at least since last check. and when I asked about the SFEMG, everyone said that there was no need since we found a treatment that works, why keep on trying to test.. which i had a seriously hard time with, since i wanted concrete answers for the longest time.. until this past year when I finally became ok with no solid diagnosis.. and then this... now THEY need a more concrete answer I guess and are just ignoring the expert on it!

I don't know if they would do a DAP trial at this point? we might have to start getting creative. What are the risks with it? I assume my Doc is familiar with LEMS.. I'm at the neuromuscular University center.. so i would hope so! They seem to be familar enough with a lot of obscure things.. but how many cases has he had to be exact, i have no idea!

As of now my breathing is ok.. but things like going up stairs, getting up off the toilet (TMI i know).. lifting my arms, pushing a public bathroom door open.. and anything with endurance (even smiling) is diminishing faster than I thought it would. Tonight would be my 2nd dose of weeky subq ivig I will be missing.. so I am officially one full week behind.. it's shocking to me that I didn't have more reserves than this...

I have not written an appeal personally yet, My dr is doing an appeal.. does it help for the patient to do one as well? I was going to also do a certified letter to that specific doctor that declined it.. (he may get a thousand a day).. but hopefully he would read it and at least kind of understand the impact it has on my life without it.

[limpy]

It took six months or more from first testing for my antibodies to show up positive. Everything was negative in the beginning. Antibody levels wax and wane and don't necessarily correlate to level of disability.
No, Ivig didn't work for me, otherwise I'd be getting that. The symptoms you describe are me exactly, when I am needing plasmapheresis again. That's a scary place, since one little event can tip you into shortness of breath and all that goes with it.
You may be able to get it through your arm veins. I tried it and my weak, slack veins would not support the pressures of the machine when it tried to pull blood through them. So I had to use a tunneled catheter until I could get my dual vortex implanted catheter placed. My very first treatment, I had a temporary catheter placed, but had to stay in the hospital and have it pulled when I left. This would get you out of a crisis if, God forbid, you have one.

Someone was questioning my diagnosis, not sure who, was the reason I had the sfemg last month. Not sure if it was the powers that be at the hospital or the company that provides Dap, or possibly the insurance company. Initially, my doctor does not like to do plasmapheresis on a scheduled basis, but my body seems to require it.
It couldn't hurt for you to write your own appeal. And I'd ask the question about whether they would prefer that you go into the ER to get treatment when your breathing becomes compromised due to lack of outpatient treatment.
I would also ask that the antibodies be retested because, like me, lack of a super solid diagnosis can come back to haunt you.

I'd also ask how many LEMS patients your doctor has seen. They are few and far between. And those qualified to prescribe dap even fewer.
Who do you see? You may have to switch up doctors to find one more qualified.

[bny806]

Thanks Limpy - I appreciate all of your help.. I see a doc at UTSW. I will ask how many LEMS patients they have. I know they seem to see a lot of strange stuff and a lot of neuro things that don't "fit into a box".

My veins typically blow.. so they might not be tough enough either They were about to put a picc line in when i was in the hospital, but i told them to keep sticking peripherally first.. and they finally found a good line.

yes, the lack of solid diagnosis for insurance purposes has always worried (and my own mental torment.. until i just accepted it). When we did some of those tests in the past i was on IVIG.. repetitive stim and SFEMG i'm sure would be best done when I'm more symptomatic.. I just don't want to have to get there again.
I had just left a full time job (after struggling for years), to have it easier on my body.. and I left insurance with that and got on my husbands plan, which we thought was better.. but now I"m thinking I'll have to go back to work full time to get the insurance to stay functional..
Where do you go, or where are there LEMS experts that you know of? I have tried not to have to travel for treatment and diagnosis, since I was getting what I needed it wasn't necessary, however if I can't get what I need, then it will become necessary