I have small fiber neuropathy confirmed through two skin biopsies at Duke. It's been considered idiopathic but neurologist and rheumy have been "suspicious" that it might be autoimmune related.

I think the primary reason for this is because of all the cause related tests that have been run, one of the few that really stands out is a CONSISTENTLY positive ANA. This has ranged from a moderate positive (1:640) to the HIGHEST positive titre on Duke University's reference range. I believe it was a 1:2560.

The treatment has always been lyrica, Cymbalta, and plaquenil.

The logic behind the plaquenil is, I think, that if there is something autoimmune going on it may suppress or alter the immune system enough that it may in turn help with the neuropathy.

Well, I've been on it and the Lyrica for quite some time (at least a couple of years) and am still frequently ravaged by this SFN. It typically comes on in what I refer to as "flares". That is, it might behave for days or weeks at a time with little pain, and then come on badly--intense burning anywhere from feet to upper legs, with some autonomic dysfunction.

The only other thing else that they have really offered me to try is an 8 week trial of prednisone--40 mg for two weeks and then 20 mg for 6 weeks. I haven't done it yet.

I get frustrated when I read about what I perceive to be some success with IVIG for small fiber neuropathy that is autoimmune related or maybe even idiopathic, but this isn't offered as an option. The doctors claim that the Prednisone should be a good indicator as to whether the IVIG would help, but I don't know what to think about that.

Anyone with any thoughts or suggestions for me based on what I have described above? They would be greatly appreciated!

I always feel like they (the docs) must be missing something or not taking somethings into consideration.

Thanks in advance for any input!

Hi,
I think a lot of the idiopathic type of SFN is automated immune related. I feel as though with the autoimmune system and their are some abnormalities that there are no tests invented yet that can reveal the issues that are going on. So they look at us and say we really don't know what's wrong with you therefore we really can't prescribe anything that may help solve your issues. That especially goes for something as expensive as IVIG...our healthcare system doesn't want to pay for that even though it might help. And the doctors are under the gun to prove to the Insurance companies that it would help and therefore they really have no avenue to help us.

Anyway I am on prednisone right now and it has helped and I told the doctor that,,,and yet he is not interested in trying to build the case to get me the IVIG therapy.

So there you have it we're in a situation that you really can't get help for. I would try the prednisone although if it does help I don't think you're going to be able to go forward with any expensive therapies.

I hope something works out for you and I hope you figure it out. Mine also comes in flares and I can't really tell what causes them. Mine has progressed over a seven month period and Now pretty much involves my whole body.

Sven

sorry about the grammar on my post...I was using voice messaging and some of it did not translate...hope you got the idea.

Hi davidl

Usually there are two parts to an anti-nuclear antibody (ANA) test. The first is the titre (level of ANA in the blood) - your titres are high. The second is the staining pattern of your anti-nuclear antibodies in the nuclei of your cells - for example, a "speckled" pattern suggests but is not necessarily diagnostic of SLE or rheumatoid arthritis while a "homogeneous" pattern can be suggestive of SLE.

Did your health care team do the second part? If not, it might be worth getting re-tested including this - it could give your rheumatologist more information.

There is more on this here; https://labtestsonline.org/understan.../ana/tab/test/.

I don't know why your doctors think that taking a steroid will tell them whether IVIG will/will not work. The steroids will tell you whether your SFN is inflammatory based...that's it! If it helps, then, yes your SFN is inflammatory based. If not, then it isn't.

IVIG doesn't work based upon whether you have inflammation. It works by modulating the immune system...primarily if you have an autoimmune condition. Your high ANA is a good indicator of this, so IVIG should be considered...without having to try the steroids. But it also wouldn't hurt to try the steroids. You don't have to do so for 8 weeks though...you'll know in less then a week if they are going to work or not.

I don't know why doctors say some of these ridiculous things. IVIG is VERY expensive and maybe they are trying to discourage you from costing the insurance company a huge chunk of money. Who, knows. But glad you getting info here so you can go to your next appointment better armed for some of their comments.

You really do need to know your 'pattern' of your ANA. This is important information, as Kiwi stated.

Mine SFN is non-length dependent. I had an unusual biopsy which showed increased fibres. My neuro thinks inflammatory and put me on a week of intravenous methylprednisolone. I didn't find it helped much. He has secured a trial of IVIG on NHS. I haven't tried it yet as symptoms have subsided quite a bit. My neuro seems to think that NLD SFN is an inflammatory neuropathy.

were both as follows:

ANA Pattern #1, Homogeneous
ANA Pattern #2, Speckled

They were this pattern for both the most recent test with the 1:2560 titer as well as the next most recent at 1:640.

Thanks for any input on these!

David

The homogeneous is associated (quite specific) with Lupus, while the Speckled can be associate with Lupus, but it can also be associated with Sjogren's, Mixed connective tissue disorders, and Scleroderma.

Do you have any rash or redness on your face (around the cheek bones)? Lupus patients can (but not always) have a 'butterfly rash' on the bridge of the nose and on the cheek bones.

Have you done any research on Lupus to see if any of your symptoms are similar?

What about Sjogren's...any dry mouth or eyes? Joint pain or unusual fatigue?

Just because labs for these specific conditions come back negative does NOT mean you don't have the condition. There is a high % of patients who are sero-negative on antibody lab testing and the only test positive is the ANA.

Davidl, I think that en bloc has offered you some excellent ideas.

If you have a look at the link that I posted above about ANA tests, you will see that there are links in it about autoimmune diseases, including those which en bloc talked about.

They might be worth checking out so you can ask your health care team informed questions.

I am diagnosed with something in the autoimmune connective tissue family. I have a high speckled ANA, small fiber neuropathy, and my lip biopsy was borderline. One neurologist thinks Sjogrens, and my rheumatologist agrees that plaquenil would be worth a try. The one problem I don't have, however, is swelling joints which from what I understand the plaquenil is most helpful for, so I haven't tried it yet. I do have terrribly dry eyes, but I can't figure out if its from autonomic nerve damage (which I have), or sicca.
No one will try me with IVIG either. I had one local neuro who attempted the process, but said my insurance wouldn't allow with out more positive tests.