Hi everyone...I have been on the board for about 9 months and have used the info here to help me deal with this disease or condition or whatever we refer to this...how about beast? But I appreciate everyone's knowledge and help for one another.

Anyway, a brief history...During a very stressful time (Sept. 2015)...I woke up with tingling in my hands that progressed quickly to burning...then moved to my feet...and finally my back, thighs and scalp...this all took place within about 3 months. I have been pretty stable since Feb. 2016. I feel as though this condition has not really improved in anyway since February although the docs keep telling me it will get better. I have been on sick leave from my job and that sick leave ends next month.

About my job...I am a pilot for a large commercial carrier and they have many restrictions as to what drugs you can take and still fly...one of the drugs that disqualifies you from flying is Gaba. So with that in mind I need to do anything I can to maybe get 50% better or so and get off Gabapentin...600 mg a nite. I have tried to keep my use of Gaba to a minimum but I need sleep and that helps.

So the last time I went to my Neuro she basically told me that the diagnosis is NLD SFN..she wants to do a skin biopsy although she said it would not change her treatment of me...which is Gaba and other pain management techniques. I told her I need disease modifying treatments and offered up the idea of IVIG and she said in her opinion it would not help but if I was willing to pay for it she would prescribe it...since she said that maybe its worth the risk to try and get me back in the cockpit.

So I thought I would put this Q to the group...is it worth the risk...she said 4 months and it would cost about 8K a month...after 4 mos. she said we would realize if the therapy is working. If it gets me better by half and off the drugs I could be back in a career i have had for 20 years. Has anybody here seen improvement to their SFN when being treated with IVIG?

I also noticed that there is more interest here in the states that IVIG may help SFN (Dr. Oaklander? at Mass General)...and there is a study in Holland where they are using IVIG vs placebo for SFN patients which started last January but won't be complete for another year or so... it sounds like there may be some
chance that this may help some of us...especially if there is some dysfunction with autoimmune system.

I appreciate any ideas or comments...thank you

Hi Sven,
Is there any indication that suggests your SFN is autoimmune related ?
As far as I understand IVIG would help only when the SFN is caused by immunological problems.
Maybe you could ask your neuro to try a short course of steroids, it might help to estimate whether immunological treatments, such as IVIG, could work.
If you are paying by yourself for an off label treatment you might want to consider Rituximab instead of IVIG. IVIG is the conventional treatment for autoimmune related SFN and there is only very little and anecdotal research regarding Rituximab in these cases. Rituximab is used in the treatment of autoimmune disorders (and in Lymphoma), it is expensive, but much less than IVIG and the frequency of the infusions is much lower.
Usually the initial dosage is 2 infusions 2 weeks apart each one 1000mg. It starts affecting within 2-3 months and if it works it is usually repeated only after 6 months. I don’t know the costs in USA, here 2x1000mg costs about 7K.
I got it about 7 months ago, it helped tremendously and I’m about to get it again soon. But my symptoms are much different than yours and it seems that I have got an autoimmune disorder.

Do you have just SFN (and, yes, “just” SFN is more then enough..) or other health problems ? Usually in autoimmune disorders there are more problems.

Have you ruled out other causes such as diabetics, pre diabetics, side effect of medications as antibiotics, vaccines, nutritional deficiencies etc. ?

Have you tried taking supplements, keeping on a healthy nutrition, physical activity, reducing stress, etc. ?
I’m taking Vit B12, C, D, E, CoQ10, and Calcium and keeping on a healthy (vegan) nutrition and it helped the SFN symptoms.

I hope you would find a way to be able to return to work!

Hi Still Hoping...
All tests were negative on AI issues along with diabetes and all the other tests...so I am idiopathic. I did try steroids for 2 months and did feel better so that may indicate that I may find some help from IVIG...and yes to the fact that I have only SFN...with no autonomic issues right now. So, mostly my issues are skin pain...burning on the feet and hands...and sunburn feelings on back, arms and thighs....no other health problems. I have reduced stress through unloading on work demands and using yoga and meditation. And I have been on a vitamin regimen learned thru posts on this site thanks to all the members here. I have ruled out ABs. nutritional issues, or vaccines...all the docs look at me and can't figure a cause...one doc diagnosed sensory only GBS...but thought I should be getting better by now...so here I am wondering if there is something other than pain management which is frowned upon by the FAA. I will ask the neuro about Rituximab...although I can't pronounce it...and look it up on google to see if is an option.

One thing I have been wondering...maybe many of us idiopathics have an AI issue but one that there is not really a test for...or we have an AI issue that has not really been discovered...it is crazy...since I really feel inflamation is causing my pain and that points to some type of AI dysfunction.

Anyway thank you for your comments

Sven

I agree with Still Hoping that IVIG is known to be helpful with autoimmune based SFN. It works by modulating the immune system...so if there is nothing wrong with your immune system, then logically, I don't see how it would help your SFN. That being said, testing for autoimmune disease is limited and up to 40% of patients are what they call sero-negative, meaning their labs are negative, yet they are still confirmed (by other means, like biopsy) to have autoimmune disease. So it is very possible that you do have an autoimmune based SFN yet your labs are negative. In this case, it might help.

However, IVIG is VERY expensive and I'm not sure how she came up with the 8K per month. I receive IVIG and my cost is just under 27K per month...and I don't even receive the full neuropathy dose of 2 gm/kg (I receive 1 gm/kg). Not to mention, neuropathy dosing typically starts with 3-5 days (in a row) of a 'loading dose', then once a month after that. You should get a proper quote (in writing) from the place administering the IVIG before you begin. Just a thought.

Hi Sven,
This is probably my case, I have been having many health issues for about 2 decades and although the AI tests have been negative, it is highly likely that the etiology in my case is autoimmune, since this is the only thing that might explain all the problems that I have had (some of them are rare), and immunological treatments helped me before.
I was “lucky” to had Lymphoma, otherwise I wouldn’t have tried these treatments. The protocol for the Lymphoma included Rituximab, high dosage of steroids and some others drugs that are used to treat severe autoimmune disorders. This treatment helped not only the Lymphoma but also everything else, so when my fatigue, POTS etc., got much worse and I got the SFN diagnosis my doctors thought that it is worth to try Rituximab again. And it worked! ((-:

If I were in your place I would try to consult with Dr. Oaklander. From what you write I guess you have seen her lecture that was published here a few weeks ago. She mentioned their study in juvenile SFPN and as far as I remember IVIG helped 80% of the participants even though some of them didn’t have any AI markers.

Regarding the costs of IVIG, when my doctors recommended this treatment (I haven’t got it since my HMO refused to fund it and approved Rituximab) they spoke about getting 25gr (it depends on your weight) each day for 5 consecutive days, and then once a month. As far as I know each infusion cost about 2.5-3K.

I am also on a sick leave, without a clear diagnosis, I miss my work, and struggle to do whatever I can to return to it. I hope that after the next course of Rituximab I would be able to work again, at least part time..

I hope you would find a way to return to work

I have confirmed autoimmune issues yet my bloods never indicate anything, they still don't despite the numerous symptoms I have. So blood tests are not entirely reliable. Based on my numerous visits to a neurologist the presentation of yours (like mine) can be suggestive of an inflammatory cause. In my post you see I am complaining of lack of effect and some flaring post ivig. But I do not regret the attempt in trying this at all. My neurobsaidbthat with non length dependent cases like ours he has about half that found benefit and half that didn't.
The steroid infusion sounds like a good first effort. I'm not sure why we went straight to ivig in my case but again I don't regret it. I've asked questions in my post about iv steroids also.
I totally understand your stress regarding work and Gabapentin. The Gaba is such a double edged sword, the sedation is a whole problem in itself.
So just to reiterate - don't let any consultant suggest autoimmunity is ruled out by negative bloods.

Hi Joanna...thanks for your comment...I read your most recent post re: your IVIG and was hoping that you were going to report some good news...and I am sorry that was not the case. I have read a few posts...not on this site if I remember correctly that sometimes SFN gets worse before it gets better after starting IVIG...but I am no doc and I am sure your neuro would know better than me...did he say anything about that? Or encourage you to stick with it for a bit longer? Although I completely understand you stopping if the pain was bad...this type of pain can be so debilitating. I got the flu in early Jan of this year and it set off my SFN...I was curled up into a ball with ravenous skin pain and burning for about 3 days...and if I do IVIG and feel that pain I would delay it. This disease is so unpredictable and unexplainable...wish we had more ideas of its make up and etiology.

I do believe I have an inflammation type of SFN...when I get some burning going on I have two defenses...I take aspirin which helps with the pain in about 15 to 30 mins. and if I need immediate help I fill my tub with cold water and put my hands and feet in and the pain goes away immediately. I agree with you that blood tests are not the complete answer to AI issues...I am sure there is alot more going on inside our bodies that we can't measure thru pokes and prods.

Speaking of the steroid infusion...in hind sight I think if I had a high dose M prednisone in the first few weeks of the onset...I would be doing better and maybe more of us would be leading more pain free lives...but the first neuro I visited just said...its just stress and it will go away instead of taking immediate action. It just seems like they are afraid to act...why? There was no deep concern or urgency...it should be "OH S%&T!...these symptoms he is explaining to me can cause CHRONIC pain...I better get him on some type of inflammatory control protocol." This is what should happen when people show up at Neuro offices complaining of these symptoms. I am sorry...I am venting a bit.

I hope that you find a treatment that works...if I do go for IVIG I will keep everyone posted on its effects.

Sven

The proper IVIG dose for neuropathy is 2 grams/kg of weight. If you are an average male and weigh 180 pounds (about 82 kg), then your dose would be about 164 grams each month. I receive 70 grams for 27K each month. There is no way you will get this for $8K a dose.

Still Hoping's insurance likely denied it due to cost. The 'loading doses' are not as high as the monthly dose, so 25 grams a day (for 5 days =125 total grams) would be appropriate. But the monthly doses are based on 2 grams/kg weight...so it would be closer to the total of the 5 days.

When figuring the cost, it is not just the cost of the IVIG (but that is the bulk), it's the cost to infuse it. If done in a hospital, it's more expensive than an infusion center. The cheapest way to go is in the home with a certified nurse there the entire time.

Thx EnBloc...
Obviously the doc I was talking to did not have a good figure for treatment...and now seeing the real cost I am not sure I can cover that. So EB are you paying for your treatment out of pocket or is that what insurance is paying. I know that there are many different types of payment schedules...so you really never know what the cost will be.

Got a go...but want to finish this discussion later.

Sven

Medicare pays 80% of my IVIG treatments, and my secondary insurance pays the balance.

The amounts I listed are the 'billed' amounts on my insurance statements. The insurance actually pays less, because they have a contract with the provider. Patients paying out of pocket don't get to benefit from those contracted amounts, so usually have to pay full price. I'm sure there may be 'some' negotiating that can happen, but it's not going to bring it down into a reasonable rate for the average person.

If you have a positive skin biopsy, then maybe your insurance will cover the cost...at least some.