Freaking out - IVIG denied (after 5 years)
 

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.

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.

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.

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

There are three doctors at UTSW who claim to have interest in LEMS. Trevedi, Nations and Phillips.
I go to University of Florida, Shands, Jacksonville. And while my doctor is not what I'd call an expert, he has had as many as ten LEMS patients and approved to prescribe Dap. He does, however treat me very aggressively, trying to restore me to as normal as possible.
Your own doctor can go through the process of being approved, if not already, but I understand it is a lengthy process with a lot of paperwork.
To find an already approved doctor in your area, Kathy Ales is with Jacobus, the manufacturer of 3,4 Dap, and is the coordinator for the DAP trials. You can give her a call or email her. Contact: Kathy L Aleš, MD 609-921-7447 ext 238 kathy.ales@jacobus-pharmaceutical.com. I understand she is very friendly and helpful.

This may not necessarily get you the Dap, but will put you in touch with those familiar with LEMS and how to diagnose and treat it.
Best wishes for you to get some sort of treatment back in place.:hug:

Thank you so much!!!! You have been so helpful! I wonder why the process to be approved to prescribe DAP is so strenuous?? I sure would love if that was an answer to all of this mess, and it could help me and make me feel semi normal ... I"ve long given up the idea that I will ever feel like my old normal.. I was running miles for a few weeks after I had my son, before this all started.. it's amazing how my body just turned against me! I will be asking more questions about LEMS to my doctor next time I go in (which may be very very soon at this rate)..
Thanks again Limpy, you're always so helpful!

The reason it's so difficult to get certified to prescribe Dap is that it is not FDA approved, mainly because LEMS is so rare and there are not that many people needing it.
Special permission must be obtained to prescribe it on a compassionate use basis. It has been provided free by Jacobus, a small family owned company, for upwards of twenty years. Usually the only cost is for shipping it.
There is another company, Catalyst, that is a publicly owned company, that is trying to get FDA approval for the same drug, only tweaked a little so that it doesn't have to be refrigerated. They are looking to charge exorbitant rates for this same free drug, claiming that is a brand new treatment.

We are all holding our breath waiting to see how it all plays out.
I hope you can get a treatment that works for you whatever it may be.

I don't know anything helpful, but just wanted to say I hope you can get your treatment in whatever. way. Good luck!

Don't you also have a immunodeficiency? I can't recall. That would make IVIG approved for long-term use, not only "Help me, I can't move or breathe emergency use."

3,4-DAP should be available!! Compassionate use, Limpy? Wow, every single patient deserves compassionate care!

LEMS is a tricky disease. What drugs are you on right now, bny? Have they checked you out for any cancers?

Annie

Thanks Ravenclaw, limpy and Annie- I appreciate it!

Annie, I have MTHFR (homozygous). and my WBC has always been below 4 since this whole thing started 5 years ago, and the past year has been in the 2's (as low as 2.1) or the low 3's. I Have an upcoming apt with a heme/onc doc for the first time ugh.. Yes.. I have had colonscopies, CT chests, , pelvic ultrasounds etc etc.. so far so good (unless the blood ends up being something).. they were going to talk about putting me on immunosuppresants, but the idea of that with such low wbc makes me nervous

So, I had my apt today.. and am so so thankful that I got IVIG covered for a while at least.. phew (kind of a long story).. but I can't believe how much I declined over the past 3 weeks.. it is shocking how fast it all happened.. and terrifying! Though my hormones were lined up with the wrong timing, plus I was exposed to a respiratory virus, so if I"m fighting that, that's not helping either. I was afraid this weekend, that I needed to go to the hospital on a few different occassions, but I was extremely non productive and took it really easy, which helped..

thank yall for y'alls help. I really appreciate it!

No, I meant immunoglobulins, such as IgA, IgG, etc. Or didn't you get the results of those tests? Sorry, can't remember.

Annie

oh sorry Annie! They did those tests years ago, but they were all high or ok, but i was currently on IVIG.. so they weren't even sure how to interpret them, I never had them prior to or while not on IVIG

Has anyone ever done a differential diagnosis on the low WBC?

http://www.mayoclinic.org/symptoms/l...s/sym-20050615

There has to be something causing it.

Are you taking methylcobalamin daily? Dare I say, at least twice a day?

Thanks Annie- Yes I take mythlcobalmin 5000mcg once a day... They haven't said too much.. most doctors think it's caused by the IVIG.. I have read that IVIG can cause transient leukopenia, but i can't find anywhere that it can cause long standing leukopenia - have you?

Since it has been so persistent, and so low they want me to see a heme/onc doc now.. the rheumy said she see's this a lot with lupus and autoimmune issues.. but still thinks it's ivig related. however she wants to rule out cancers obviously before chalking it up to ivig.. I dont' think throwing immunosuppresants on top of that would be a very good choice.. I don't feel like they think it would be that big of a deal though.. they said they would just monitor my wbc.. .but if it's already low.. then why would you even start them?
I am really struggling from that IVIG break.. :( I forgot how awful this all feels

So relieved that you got Ivig approved.
You sound like me when I had to practically be ready to kick the bucket before I could get plasmapheresis. It takes a while to get back to 'normal'.

Thanks Limpy... I got really weak last night, I think I overdid it, since I have been so weak the past few weeks, I just had to catch up around the house, and i was like a big limp noodle... it worried me as my breathing started to get bad.. turns out i was getting my kids respiratory illness too.. so I'm now fighting that too.. hopefully that IVIG will kick in some before the cough gets worse .. It makes me quite irritated that I am having such a big set back thanks to an insurance company GRRRRRRRR

[QUOTE=bny806 It makes me quite irritated that I am having such a big set back thanks to an insurance company GRRRRRRRR[/QUOTE]

I quite agree. If any of those people doling out the treatments could live in our bodies for just twenty four hours, I think there would be a big change in the way things are handled. Sorry you are having to cope with all this.

Thanks Annie.. I"m just thankful I got it this time.. and am starting to get stronger... gave more IVIG last night.. of course I've come down with this respiratory bug and my cough is so weak (like it was years ago)... thankful I didn't end up in the hospital last week!!! have a good weekend!