Good points you make
 

I have an appointment with my Doc next week..she is just an internist because the only two Rhuematologists in my area are NOT accepting new patients..go figure my luck:( So she is beside herself not sure what to do..I think she is basically waiting me to do the research to help her figure it out. I feel that she will pretty much try to help me get any medication I feel I need that may help. You are right the insurance company is the one that will give me trouble. I am in a battle with them right now so they will pay for Restasis..because they figure dry eyes is not a serious condition...just use visine...lol. Like I haven't tried every brand of over the counter eye drops in 15 years. Get this...they say that since there is no official proof that I have tried the over the counter drops and that they don't work for me..they will not pay for restasis unless I have all the eye tests done yet one more time. Tired of jumping through hoops with broken legs...:( I am thinking about Sulfasalazine which is an older medication and from what I can tell from the info a nurse gave me..cause she takes it...it has fewer side effects than Plaquenil and is better than killing immune system with steroids or cellcept type meds. For the neuropathy I am thinkng about trying Acetyl Carnitine...an over the counter supplement that is showing through research to help with nerve pain and MAYBE can help regenerate nerves. Though my pain is so bad somedays where I can't walk very well, I am trying to avoid narcotic pain meds. I have always had a high threshold for pain..seems it runs in my family luckily....so I am going to keep hanging tough without it for as long as I can. My doc is real good because over the past 15 years she has repeated the autoimmune tests over and over again to see if anything shows up in blood. Shows that she realizes that I can seroconvert at any time. She did say that hopefully I never do convert..because this would be bad to have inflammation markers in blood....can't be a good thing.:winky:
But anyway thanks for your reply.....I am just walking frustration most days trying not to give up. Take care...Mary

Now, you two have me questioning my "most likely" Sjogren's dx. My ANA is low at 1:80, with positive SSB, speckled. My RA factor is negative. So, while my rheumy, believes I most likely have Sjogrens, at this point he only recommends treating the symptoms.

I did have the Schirmer Tear Test and scored a 1 in one eye and a 2 in the other (anything above 10 is considered normal), so my insurance does pay for Restasis. I have problems with the parotid gland, so use hard, sugarless candy to produce saliva. And for dry sinuses, use Ocean.

I have to admit that I haven't researched ANA or Sjogren's like you both have. Am I missing something? Should I be paying more attention?

I think it is a good idea, as you are doing, to exhaust all possible treatments that don't have the potential risks.

I did have IV steroids for months....not good.

With a high ANA for over 3 years, given the patterns, I am getting a bit frustrated with docs, and feel I need a bit more oomph to the ivig, but, yet, I too, am really scared to step up to the big guns like cellcept, but I think that it is the next option.

Plaquenil is an itch inducer which for those with small fiber may really cause problems....it did for me.

I had the same battle with Restasis. An opthamologist had to prescribe it.

I think that insurers are not very knowledgeable about UCTD or SjS. They assume that UCTD means you don't have an autoimmune disease, on the contrary, you have bits of several. It is like 2+2+2=6....not 2+2+2=0. UCTD is a specific condition, autoimmune, usually consisting of diseases of several diseases.

Here is a decent summary. I think they stupidly named it 'Undifferentiated' when in fact, it is a distinct disease, and deserved its own name....and then named Mixed CTD, mixed, when it has its own antibodies. Undifferentiated should have been Mixed, and Mixed should have been named something else, RNP+ connective tissue disease or some other name, after some patient or researcher. Insurers see 'undifferentiated' and can't figure it is a seperate distinct disease, and they think SjS is dryness.

I meet a lot of UCTD criteria, except that I meet the SjS criteria, given I meet all criteria except SSA/B+. However, dryness will cause that lip biopsy to be +.

http://emedicine.medscape.com/article/334482-overview

Sjorgen's with severe autonomic and sensory neuroapthy
 

Hi guys and gals,

This is my first post on this site, so apologies if I do it wrong.

After being mostly bedridden for the past 20 months, I was just diagnosed with severe autonomic and sensory neruopathy caused by Sjorgen's Syndrome. Cleveland Clinic wants me to get IVIG right away, since the sooner you start it the better it works (so they tell me). I have Blue Cross Blue Shield insurance. I am wondering if anyone else on here has been successful in getting their insurance company to cover IVIG for Sjorgen's related neuropathy.

I am so scared they are going to deny it and I will only get worse. I am already bedridden from the autonomic problems for about 20 months, my hair is falling out and I have lost 60 lbs. because I can barely swallow without choking on food. Those symptoms don't even bother me as much as the severe breathing problems I am having. I would literally cut off my legs if it would help me breathe better. It is terrifying not being able to breathe, and not having anything that helps it (oxygen, asthma drugs, etc. unfortunately do not help the breathing). Not trying to be a complainer, because I know everyone on here has major healthy problems too. Just wondering if anyone else is going through the same thing as me with Sjorgen's triggered neuropathy. I already have a chest port for my daily 1 liter IV saline (to help minimize my low blood volume, caused by kidney/nerve damage - also probably due to the Sjorgen's), so I am ready to get hooked up to that bag of IVIG right now. My docs are telling me it's going to be a long fight with insurance and that I may not be approved.

If anyone has had IVIG covered by insurance for Sjorgen's neuropathy, please let me know.

Thanks!
POTS Grrl

IVIG can usually be approved for neuropathy (regardless of the cause) IF you have documentation like positive EMG/NCV or skin biopsy showing small fiber neuropathy. IVIG is not normally approved for Sjogren's alone.

I too have neuropathy (both sensory and autonomic) from Sjogren's and received IVIG for many years. My initial approval was based upon selective IgG deficiency (but it helped the Sjogren's neuropathy) and later received it under a neuro diagnosis alone.

IVIG is not a instant fix. It takes time to see results. But I did find it helpful.

It doesn't sound as if you would have any problems getting the treatment approved with your severe case/ neuro symptoms, which certainly they've documented.

Hopefully they will approve you soon so treatment can begin.