SFN not a good enough diagnosis to get IVIG ?

[RecipeForDisaster]

After the doctor told me he was angling for IVIG, and talked me into the biopsies, he said he wanted to order it once we got the positive results back. It’s been about 10 days, and I finally found out that they have a message there that "that’s not enough of a diagnosis to get it covered", which is a shock to me. I would never have done the biopsy and I had a glimmer of hope about this. I keep getting worse and am barely able to push through everything - not sleeping, too nauseated to eat, losing "time" when I stand even slowly (plus hearing and sight), just feeling horrible, plus the neuropathy which is constantly worsening. The SFN was probably my only qualifying diagnosis, although I do have HYCH, positive ANAs in 2 ways, immunofluorescence, abnormal subclasses and beta globulin, etc. I wanted this to help with my suspected antibodies to alpha, and autoimmunity, not so much the neuropathy.

 

My insurance is pretty easy to deal with and covers most anything. I don’t know how hard they tried, if at all, but my new nurse case manager is not exactly a go-getter and hasn’t done anything to help, despite my pleas. I don’t know what to do here - any advice?

[Pistol]

Have you tried to do an appeal? The problem with most of these rare diseases is that there are no set protocols and no FDA approved meds. Sometimes the docs have to get tricky to get a med approved. I would talk to your physician and discuss this. sometimes my docs can get around the insurance's limits by sending a detailed explanation. In the past - for me - this has led to approval despite an initial denial. Also - sometimes if the one doc can't get something approved another specialist may be able to. Keep going - an inital NO does not mean it is the end of the road! I have called my insurance before and fought until my teeth fell out and eventually I won. If your caseworker does not help - ask for her supervisor! I have taken it all the way to the medical director of an insurance and got approved. PM me if you need specifics!

[MikeO]

16 minutes ago, RecipeForDisaster said:

My insurance is pretty easy to deal with and covers most anything. I don’t know how hard they tried, if at all, but my new nurse case manager is not exactly a go-getter and hasn’t done anything to help, despite my pleas. I don’t know what to do here - any advice?

Well i went thru this kinda when we went to get my angiogram approved. First round of diagnoses and documentation was not enough so my Dr office ended having to send in more supporting documentation it did finally go thru.

I would call your insurance company and inquire as to why the denial in there words. You can also appeal the denial and see where you end up.

Be persistent! Squeaky wheel usually gets the grease. 

[RecipeForDisaster]

7 minutes ago, Pistol said:

Have you tried to do an appeal? The problem with most of these rare diseases is that there are no set protocols and no FDA approved meds. Sometimes the docs have to get tricky to get a med approved. I would talk to your physician and discuss this. sometimes my docs can get around the insurance's limits by sending a detailed explanation. In the past - for me - this has led to approval despite an initial denial. Also - sometimes if the one doc can't get something approved another specialist may be able to. Keep going - an inital NO does not mean it is the end of the road! I have called my insurance before and fought until my teeth fell out and eventually I won. If your caseworker does not help - ask for her supervisor! I have taken it all the way to the medical director of an insurance and got approved. PM me if you need specifics!

I’m honestly not sure they even tried to get it approved. It sounded, third hand, like they just gave up before they started. I am still waiting to talk to someone. I wrote to my big city neurologist as well, in case he is better at this. I would definitely appeal it. I would be happy to get those specifics!

 

Good idea on the supervisor. I tried that before with her and they were like "what do you want us to do?". 

[RecipeForDisaster]

2 minutes ago, MikeO said:

Well i went thru this kinda when we went to get my angiogram approved. First round of diagnoses and documentation was not enough so my Dr office ended having to send in more supporting documentation it did finally go thru.

I would call your insurance company and inquire as to why the denial in there words. You can also appeal the denial and see where you end up.

Be persistent! Squeaky wheel usually gets the grease. 

I’ve been through it with other things, meds and tests. The communication breakdown is a lot of the problem here. I never heard from the ordering physician or his staff. I really don’t think there was a denial.

[MikeO]

12 minutes ago, Pistol said:

I have taken it all the way to the medical director of an insurance and got approved

My procedure request ended up on some directors desk. took three weeks to finally get the approval. I am thankful that UW is good at what they do.

[RecipeForDisaster]

39 minutes ago, MikeO said:

My procedure request ended up on some directors desk. took three weeks to finally get the approval. I am thankful that UW is good at what they do.

I will fight if I have a choice. I happen to be getting much worse overall in the last week or so, so I’m highly motivated. 

[MikeO]

49 minutes ago, RecipeForDisaster said:

I will fight if I have a choice. I happen to be getting much worse overall in the last week or so, so I’m highly motivated. 

I feel so bad for you, I know you really are looking for some relief. The fact that you were given a bit of to grab onto just to have the carpet pulled out from under you just adds salt to the wound. I had a TTT canceled a bit back due to a other health issue. I was really looking forward to possibly getting a solid diagnoses and even drove 5hrs round trip to get a EKG because my local provider fudged up the one a few weeks prior so i get the feeling.

All i can say is stick with it. I am sure you are by now SUPER motivated!

[MTRJ75]

They probably want proof that an autoimmune process is causing the SFN. 

[RecipeForDisaster]

36 minutes ago, MTRJ75 said:

They probably want proof that an autoimmune process is causing the SFN. 

I mean… IGG vs. FGFR3… ANA positive in 2 ways… other gamma globulin abnormalities… I sure hope they are putting that in their documentation!

 

I finally got through to the neurologist's office, and they didn’t even submit the PA yet! Seriously? Thanks for scaring me so much. The secretary did not have to read me that cryptic message!

[RecipeForDisaster]

1 hour ago, MikeO said:

I feel so bad for you, I know you really are looking for some relief. The fact that you were given a bit of to grab onto just to have the carpet pulled out from under you just adds salt to the wound. I had a TTT canceled a bit back due to a other health issue. I was really looking forward to possibly getting a solid diagnoses and even drove 5hrs round trip to get a EKG because my local provider fudged up the one a few weeks prior so i get the feeling.

All i can say is stick with it. I am sure you are by now SUPER motivated!

Like I always tell my doctors, I might be able to deal with this if I’d stop getting worse. My quality of life isn’t something most anyone would put up with, and it just keeps getting lower. I need the basics - sleep, walking, eating. I really don’t have those now.

 

Having stuff canceled after you’re all ready for it is horrible.

 

I won’t give up on this. There is very little else I can hold onto. NIH undiagnosed diseases program is about it, and that is not super likely.

[Guest KiminOrlando]

They suspect I have SFN, but decided not to do a biopsy because it 'didn't matter'. My doctors said it didn't matter because there was no treatment that would be approved for it. The doctors decided it wasn't worth putting me through the procedure and the co-pay just to say, 'Yep, she has it.' I already had disability based on other diagnostic criteria. I'm curious if there actually is treatment that works, but insurance doesn't allow for it or if there really isn't treatment. Sometimes a treatment is classified as 'experimental', but it is commonplace to use it that way. I'm wondering if that is what you are up against. I'm sorry you have SFN and I'm sorry you are unable to get the treatment your physician recommended. 

[RecipeForDisaster]

Ugh, yeah, I did not enjoy it. The copay was $150, too. I was told that I could try IVIG if it was positive for SFN. I was also told that Lyrica should help it, but it hasn’t for me. I take supplements that should help, too. I don’t have disability, though. 
 

It turns out that they did not actually order it or get a denial before I was told all this. I guess the secretary misspoke, which is kind of maddening. So far, I have 2 other doctors who have said they’ll help me with insurance qualification if needed. They really want me to try it, because there is not much else out there that might help! The infusion pharmacy is motivated to help as well. Fingers crossed… 

[MikeO]

16 minutes ago, RecipeForDisaster said:

Ugh, yeah, I did not enjoy it. The copay was $150, too. I was told that I could try IVIG if it was positive for SFN. I was also told that Lyrica should help it, but it hasn’t for me. I take supplements that should help, too. I don’t have disability, though. 
 

It turns out that they did not actually order it or get a denial before I was told all this. I guess the secretary misspoke, which is kind of maddening. So far, I have 2 other doctors who have said they’ll help me with insurance qualification if needed. They really want me to try it, because there is not much else out there that might help! The infusion pharmacy is motivated to help as well. Fingers crossed… 

I am so hoping for yoo!

[Guest KiminOrlando]

Lyrica did not help me either, but I gained 35 pounds in 2 months on that drug. It was ridiculous. Keep us posted. 

[RecipeForDisaster]

Lyrica helped my TN quite a bit, along with carbamazepine. But I don’t think it has helped my neuropathy (unless the TN is from that). My feet burn badly and I always have buzzing/vibrating in my legs. 
 

Lyrica is why I’m not underweight anymore, although since I’ve been doing worse, I am losing again. It caused the doctors to stop worrying about my weight loss, sigh… it put about 20% on me on its own. It doesn’t matter if I don’t eat!

[ramakentesh]

You noticed any itching with the SFN? That and not being able to tell cold from hot on my feet were the reasons I got that biopsy done. I was positive but years later i was negative and POTS was the same so work that out

[RecipeForDisaster]

4 hours ago, ramakentesh said:

You noticed any itching with the SFN? That and not being able to tell cold from hot on my feet were the reasons I got that biopsy done. I was positive but years later i was negative and POTS was the same so work that out

It’s so bad, one of the worst features of my SFN! It keeps getting worse and is like whack a mole. I scratch one place, it’s relieved, then somewhere else totally random starts itching, and this repeats… nothing helps the itching, other than finally scratching the itchy part. If I don’t, it keeps getting worse and worse.

 

I was surprised that I tested as unable to detect change in temperature in my feet and legs. I had a negative/inconclusive biopsy years ago. I think part of it may be technique.

[ramakentesh]

Yeah that sounds very similar to what i experience.

[RecipeForDisaster]

12 hours ago, ramakentesh said:

Yeah that sounds very similar to what i experience.

They encourage me to try more Lyrica, but I prefer taking 75mg at bedtime. It’s only when I’m trying to sleep that it’s a huge problem. I tried 100mg and no help. Allergy meds, supplements, you name it, nothing helps it - and if topical lidocaine helped, I'd have to bathe in it. It’s literally my whole body including in my ears.

[RecipeForDisaster]

I am so relieved - I was approved. It’s going to be over 2 days every 6 weeks. 

[Guest KiminOrlando]

That is great news!

[MikeO]

1 hour ago, RecipeForDisaster said:

I am so relieved - I was approved. It’s going to be over 2 days every 6 weeks. 

Good job Girl! I am so happy for you. I hope it helps out.

[Pistol]

@RecipeForDisaster - I am happy and hopeful for you. Best wishes - and thank you for sharing the good news!

[RecipeForDisaster]

52 minutes ago, Pistol said:

@RecipeForDisaster - I am happy and hopeful for you. Best wishes - and thank you for sharing the good news!

Thanks guys! I’m cautiously optimistic. I found a favorable sounding study about this. It’ll be 55gm each day for 2 consecutive days. They’re doing the first dose at my house!