IVIG treatment
 

Has anyone had it for PN or SFN for that matter? There was a thread from a while back on here that I tracked down and the fellow from NY has seen regrowth of fibers in SFN (I think). He seems to have disappeared a few years back. I'm on no RX meds and don't intend to be as long as I can avoid it, but this is something I'd consider, since it seems to not treat the symptoms but the problem itself, and to heal not mask.

I receive IVIG for PN/SFN and have had improvement. But I will warn you that IVIG is extremely expensive and typically insurance requires other treatments (steroids, anti-seizure, anti-depressants, etc) be tried first before you'll get a chance at IVIG. That being said, if you have a positive skin biopsy, documented autoimmune disease, and/or a doctor willing to go to bat for you, then you might get a trial without all the red tape.

You are correct in that it treats the root of the problem and can actually increase fiber density (and this can be confirmed with follow-up skin biopsies).

Can't hurt to try to get IVIG from the start...just don't be surprised if you have to try other treatments first.

Thank you for this information. I'll ask my neuro about this the next time I see him, and hopefully he'll be receptive. All he mentioned at our last appointment is Prednisone, if it's autoimmume, specifically Sjogren's.

If I may ask, how long have you had it and in what way has it helped? I'm wondering if it can cure or completely heal SFN, or at least give one's body a fighting chance.

I'm going to do some research on this, but if anyone has any article, studies, anything to link to regarding SFN and IVIG, I'd love to read it.

I have Sjogren's...and have had it for 19+ years. So sadly, my PN/SFN is due to damage at the ganglion level (ganglionopathy) from the Sjogren's and this is typically permanent/non-repairable. But my neuro/rheumy at Hopkins (only one in the country to be both a neuro AND rheumy---and his specialty is Sjogren's related neuropathy) wanted to try anyway. I was already receiving IVIG for primary immune deficiency (25% of those with autoimmune disease are also immune deficient) so we just upped the dose to appropriate level to treat neuropathy (which is triple what is received for immune def.). At first I didn't think it helped all that much, but now (over a year later at this higher dose) I can tell my autonomic symptoms are improved as well as 'some' pain...but not too much. I do have significantly increased SFN pain the last week before my next infusion, which is a clear sign that it is helping the other three weeks. I am actually able to reduce some of my cardiac meds (for autonomic dysfunction) due to receiving the IVIG. I also have improved Sjogren's symptoms (less dry mouth/eyes and less fatigue). I still have significant joint pain, but I also have psoriatic arthritis, so some probably from that.

By no means is this the perfect treatment, but it is far better than anything else I have tried (and I have tried them ALL over the last 19 years). I am more functional now and although not huge difference in pain from SFN/PN, there is a noticeable improvement...and ANY improvement is welcome. And also considering that I should have had NO improvement due to damage at the ganglion level (documented on special MRI/MRN showing enlargement of dorsal root ganglia), I am very grateful for the little improvement I receive.

I am hoping he will repeat my skin biopsy this next year to see if it shows changes in the morphology (condition) of my nerve fibers (that were previously segmented, tortuous, swollen, etc) and density. That would be proof that the IVIG is helping (other than my reported changes).

My neuro told me that Sjogren's related damage is almsot never cured/repaired UNLESS agressive treatment (like IVIG) is done within the first year of onset. This increases your changes of improvement and it decreases every year after. This is why he was surprsed I had any improvement this far out. My improvement may not be much, but it's better than nothing, which is what we expected.

Hope this helps.

Here are two papers that I got from my neuro regarding SFN and IVIG in autoimmune disorders (Sjogren and Sarcoidosis) -

Extreme efficacy of intravenous immunoglobulin therapy for severe burning pain in a patient with small fiber neuropathy associated with primary Sjögren’s syndrome
2009, Takahisa Gonoa, Eiichi Itob, Hiroyuki Noderac, Yasushi Kawaguchi*a, Hisashi Yamanakaa & Masako Haraa
http://www.tandfonline.com/doi/abs/1...165-009-0180-2

Efficacy of intravenous immunoglobulin for small fiber neuropathy associated with sarcoidosis
2011, Joseph G. Parambil a,*, Jinny O. Tavee b, Lan Zhou b, Karla S. Pearson a,Daniel A. Culver a
http://www.sciencedirect.com/science...5461111000418X

Thank you for sharing your story/situation, En Bloc. Much appreciated.

First off, I'm sorry to hear that you've been struggling with this for so long. But I'm also happy to hear that IVIG has given you some relief, and yes, any relief is of value.

I have a number of avenue that I want to discuss with my neuro and now your post makes me thing I should ask for IVIG, but also for the special MRN scan you received. What is it exactly? I take it it's not an MRI but an MRN and that the MRN can image the dorsal root ganglia? Does inflation necessarily mean damage at the cellular level? I didn't know about this test. I would like to know whether my damage is at that root level, if at all possible. I'm glad that you've experienced improvement even though yours is at that level. Another poster just yesterday I believe noted that even damaged or dead cells can regenerate or grow anew, so to speak. Do you think it's that? I don't know anything more than that passing comment at this point, but I'll look into it.

I'll speak to my neuro about the possibility of IVIG. Hopefully it's possible, especially since you note that time is of the essence. I've posted 'My Story', did so last week, and as I mention, one suspect is Sjogren's, but my ANA came back negative twice and I don't have dry eyes. I do have severe dry mouth, esp at night when sleeping, and sometimes it dries out completely, not a single drop left, and this extreme form is more recent, so several months after the feet started going. I do have itchy eyes, but they're quite wet in fact, much more so these days when exposed to the cold (so rather than a few drops in the cold, it almost looks as though I'm crying), especially if I'm speeding through on my bike. Perhaps I should post my symptoms and ask on the autoimmune forum. My neuro is trying to get me an appointment at a Sjogren's clinic, so they can take a mouth biopsy, but perhaps that's not 100% either. My only skin biopsy was of the calf area and it came back with significant fiber density reduction but no noticeable morphological changes.

I do hope I can get him to consider IVIG, though I've heard there can be some very extreme consequences/side effects too. Regardless, good for you that it has helped, and I do hope your new biopsies, if/when you get them, show improvement. I'm rooting for you. :)

David,

The MRI I had is probably best called an MRN. It was (and may still be) experimental at the time done (a good 5 years ago) as an MRI with a special DRG (dorsal root ganglia) Protocol...to look directly at the DRG. This was at Hopkins, through their neuro dept. I don't know if anyone else offers this special DRG protocol now (it was not offered anywhere else at the time mine was done). The enlargement also generate increase signal, so they concluded it was a sign of inflammation and damage of the ganglia. I do think there has to be 'some' means of regeneration of cells for me to experience even mild improvement.

As for your ANA being negative: My ANA, as well as SSA & SSB (Sjogren's antibody tests) are ALL negative and have been for 19 years. I am sero-negative for sjogren's...as are up to 40% of Sjogren's patients! Although my lip biopsy was clearly positive showing complete destruction of the acinar structures and replaced with scar tissue. The degree of damage and fibrosis was listed as typical of Sjogren's at end stage. So, that being said, don't discount the Sjogren's until you've had a lip biopsy and other antibody testing. And make sure your lip biopsy is read by a qualified pathologist with experience in Sjogren's Dx...and make sure they use a proper scale, like Greenspan.

Is it possible for you to travel to Hopkins? They have an excellent Sjogren's Center and of course I mentioned earlier about my neuro/rheumy who specializes in neuro manifestation of rheumatic disease (specifically focused on sjogren's). His name is Julius Birnbaum and you can find many of his articles, bio, etc online. If possible, it would be well worth your effort to try and see him.

And one more note: Dry eyes often water more frequently than normal eyes...due to inflammation. You should have your eyes checked by an ophthalmologist and a few tests done (schirmer's, Rose bengal, slit lamp etc). You may have more damage to your eyes than your realize. Just a thought.

En Bloc,

Thank you for all this information, your thoughts, and just your willingness to help guide me here. It's very much appreciated.

I will speak to my neuro about the MRN, which I've thoroughly researched now. I'm more concerned about treatment, so the IVIG, if it comes to that, but I do like to know what's going on and what level my damage is at. You see, I'm in Canada, so I'm not sure how common the MRN is. Socialized medicine has immense benefits, but it can also be slower and not at the very edge of new advances, especially if the government doesn't fund it sufficiently, as was the case with our last one. But for now I also have US insurance, because I work in the US, so perhaps I can use that avenue. It definitely appears that you found your MRN helpful. And I'm glad to hear what you say, namely, that your improvement seems to signal that damage even at the DRG level can be healed. I wish the best for you and am now keen to hear what your future biopsy shows. Mine showed significant density reduction but no morphological changes. That has to be good, no?

The information regarding Sjogren's is very useful. I'll speak to my neuro. I have an appointment at a leading research clinic for Sjogren's here, though it might not be for months - neuro just sent the referral. So I'll definitely have a lip biopsy done. Not sure if the further SSA and SSB antibody tests are necessary then, no? But I haven't ruled it out, especially now that I know so many test negative for the antibodies. I didn't know that, wow! I do have a lot of the symptoms, but I also have lots of other symptoms. Clearly there is something happening with my immune system, what label we put it may only be important in some cases and especially those that allow for IVIG under the system here in Canada. Some neuropathies allow for it.

For now, my case isn't as extreme perhaps. Then again, it sort of is, as it's all over with autonomic dysfunction. Diet and lifestyle changes have helped greatly.

One thing I will do, based on your helpful suggestion, is ask my GP to refer me to an ophthalmologist to check my eyes. It may takes months to see one, it often does, but I'll try to pull some string, and get one in January, if at all possible. My eyes are very important in what I do - I spend hours a day reading and writing, and can't afford any dysfunction, but that may not be up to me. My eyes have been acting strangely of late though, so you're right, I should get them checked out.

I will say that due to the slow pace of things here, I've been considering heading to Phoenix (apparently there's a SFN clinic there) or Mayo or perhaps Hopkins and getting lots of tests done in a few days and trying to figure out the cause at least, which is most important right now. I'm still sitting on this, partly because I want to speak with my neuro about it first, though he did suggest it in passing at our last appointment, but also partly because it's not cheap, and my insurance doesn't cover 100%, more like 70-80.

Anyway, I've noted all you've written here. Thank you. I may have some more questions, given how knowledgeable you are. I appreciate this. And please let us know how it goes with you. I am hoping you do well on the IVIG, or keep doing well. It seems like the best possible thing. Well, do they even do stem cell for SFN, or is it not done for any condition for now? I can't recall if it's only being studied in vitro. Now I'm just thinking aloud.

Thanks again!

It is possible to get a Sjogren Syndrome diagnosis with a negative lip biopsy and a positive SSA/SSB/ANA, so these tests are important.
The risk for neurological disorders (such as neuropathy and trigeminal neuralgia) and Lymphoma, is much much higher when having Sjogren. So a Sjogren diagnosis might help you with the diagnosis and treatment of the other problems.

I had severe dryness and joint pain but negative antibodies and nonspecific inflammation in lip biopsy so didn't get this diagnosis. But... I had many of the problems that are much more frequent in Sjogren - Adie tonic pupil, trigeminal neuralgia, Lymphoma, POTS, and SFN.

Although I don't have any specific autoimmune diagnosis my neuro recommended on IVIG/Rituximab because it is more likely that I have something like Sjogren, then having all the above complications of Sjogren without an immunological cause.

Good luck getting a relatively quick appointments !

Lots of great, intelligent information in this thread....thanks guys! I have a question and an observation.

Bacground
My dysautonomia hit me with full force this past April....diagnosis (at a glacial pace of course) of Dorsal Root Gangliopathy because ankle and thigh SF biopsies positive. Dysautonomia specialist validates "my" diagnosis and why I think I have it:result of drug toxicity: I had many neurological symptoms from a potent antidepressant cocktail -- went into a hypertensive crisis and then abrupt withdrawal a year ago. Nothing in the literature about this.

However, dysautonomia did not set in until April. I also now have sensory neuropathy.

Question
Q: I had a lag time...could it be these events set off an incipient Sjogrens or some such autoimmune thing? I ask because I have such disabling fatigue..... "sickness behavior," basically bedbound. I have a followup with a rheumatologist, so I will (again) ask for the lip biopsy (she feels it has a lot I f false negatives....) Yet I wish to know for IVIG...

Observation: YES get eyes checked. Went last week to ophthalmologist for dry eye and found I have nerve damage - slight at this time. Threw me.

Thanks!

StillHoping, thanks again for keeping the conversation going, and for all this helpful back and forth. I didn't know that a negative lip biopsy can still mean Sjogren's. I'll see about the other two antibody tests, as I've already tested negative for the ANA twice. I think I may have some degree of TN, but it's very minor, for now at any rate. I'll let you know when I have the biopsy done and the other blood work, but it may not be for some time, if I stick around in Canada.

It seems that you're still looking too. I really hope we get more answers soon. I'm also curious to see what improvement you have on your new treatment, if you go ahead with it.

Welcome and thanks, SylvieM. This thread is really great. StillHoping and En Bloc has been so helpful. I'll ask to see an ophthalmologist tomorrow when I see my GP, for sure.

I didn't know about false negatives on the lip biopsy. Perhaps that's what happened to StillHoping's sample? It may be worth doing the antibody tests and getting the lip biopsy to see what comes up?

There are false negative (and false positives) for any test...what matters is how often it happens and I haven't seen anything that indicates lip biopies have an unusually high rate either way. What does seem to be a problem with lip biopsies is lack of pathology experience with Sjogren's and them not using proper scales. I have seen the results from many pathologists (via other Sjogren's patients posting results on forums) and many don't even use a scale.

I do know that ANA and specific antibody testing can be positive when lip biopsy is negative, but this usually occurs at early stages when there isn't enough foci on the biopsy to warrant a positive result YET. A focus is an aggregate of 50 or more lymphocytes, histiocytes or plasma cells...and more than one focus (within a 4mm sq section) is required for a positive biopsy result.

David,

you should have the antibody testing done, but don't be surprised if they are negative, since your ANA is negative. It would be somewhat rare to have a negative ANA and postive SSA or SSB.

Sylvie,

Your unusual presentation and 'lag time' may be from exactly what you thought...triggering an autoimmune process. It is also possible your neuro symptoms presenting first is from this same trigger...because MANY with autoimmune disease start with neuro symptoms first, then later have the more typical autoimmune symptoms from the specific disease (MS, Lupus, Sjogren's etc)...I am one of these patients. I got sick with a severe upper respiratory infection (that was the trigger) which set the wheels in motion. It started with dysautonomia symptoms affecting my heart rate, BP, etc. it wasn't until months later that the fatigue, dry mouth/eyes etc all started.


David, I thought I read somewhere you had some fears about IVIG. I started using it in 1997, so, I have a bit of experience. It is relatively safe but needs to be properly controlled and administered by educated nurses/doctors...and what to look for in regards to serious side-effects. I would be happy to answer any questions you have about IVIG...including what can go wrong (I've experienced that too).

Hope this helps. Please pardon my spelling errors, as I stil don't have an working spell-checker at present and most sites don't provide them anymore. So I'm winging it...lol

En Bloc,

Your responses are always helpful. Thank you.

I will ask for the SSA and SSB and ensure that the lip biopsy is done properly. I don't have any issue insisting on things that I think need to be done, whether the physician is offended or not. I have been referred to a leading rheumatologist, perhaps the best in the country, so I think the technical aspects should be fine, but he is known to be an arrogant fellow, so I'll see what happens. Arrogance can also and often does lead to incompetence. We'll see...

I'm seeing an optometrist in January, and then possibly an ophthalmologist. The former will run some tests, and then we'll go from there. However, I learned that for my age group, and since I don't have Glaucoma or diabetes, I will have to pay and it's not state covered, so I may delay and ask to see an ophthalmologist, though that may take months. I may just pay the $125 and get some testing and imaging of the eye, which is what I believe they'll do.

I appreciate your offer to inform me further about the potential negatives of IVIG. I would like that, since I plan to ask for it but that's my only hesitation. I've heard in some extreme cases there can be liver or general organ failure, among other things. I'm sorry to hear that you've experienced some negatives of the treatment. I hope that has passed.

So you've been doing the treatment once a month since 1997, do I have it right? If so, how much improvement have you seen in over 8 years of this treatment? And have you done further biopsies during that time to see if there are any signs of healing and not just symptom relief? Perhaps I have this wrong, and you've only recently begun. But I'm curious what the course of treatment is, if it's healing (if not entirely curative).

Thanks again, and Merry Christmas!

I started receiving IVIG in 1997 and continued until 2007 (10 years), then restarted in 2013 to present.

All 'big gun' treatments carry risk...and IVIG is in that same class. IVIG is a blood product. It takes about 2000 donors to make ONE dose. But as a blood product, there is always a risk of rejection/reaction. It's foreign to your body, so measures are taken to reduce the impact on your system. Typically, patients will receive 'pre-meds' before starting their infusion. Tylenol, Benadryl, and IV steroids make up the usual cocktail. However, one of the most important things to do before infusion, is drink...LOTS of water/fluids to hydrate even over hydrate a little. And continue to hydrate during and after the infusion to help reduce the risk of reaction. These side-effects may start during the infusion (and stop if you catch them and reduce the rate), but may also hang around for a couple days after infusion.

The most common side-effects of IVIG are headaches, chills, flu likefeeling, weakness, low grade fevers and muscle aches. The headaches are most common and can be mild or severe. All most all of the side-effects are rate related and may go away if the rate of infusion is slowed down. So it's very important to communicate ANY side-effects you start to get during the infusion, so the nurse can adjust the rate accordingly to keep you comfortable.

It is possible for the headache to develop into something more severe...like aseptic meningitis. I ended up with a severe case os aseptic meningitis in 2007 and this is why I stopped IVIG for several years. It is a rare, but serious reaction to IVIG and my doctor was not comfortable (for several years) continuing treatment. It wasn't until I had repeated infections (from my immmune deficiency) that we decided to try infusions again. Being that i would be at high risk of another case of meningitis, we started very slow and slowly increased the dose over many MONTHS. We also added Zrytec to my pre-meds to help curb any reactions. So far, I have successfully received IVIG for 2 years without any problems!!

One other thing I should mention, is that once you use a particluar product (brand), then you need to stick with that one. Just changing products can bring on reactions as well.

Also, although you may think going 6 months without a reaction means you won't get one...this is wrong! Every dose of IVIG is made with different donors, so each dose can cause a reaction. I had received IVIG for almost 10 years (monthly) when I got aseptic meningitis...so clearly years of use (same product) doesn't make a patient immune from a reaction.

Ask questions, be informed and communicate ANY side-effects as soon as they occur. Most people toloerate IVIG quite well if given slowly and they are well hydrated. Rushing to finish is not the way to go. My infusion takes 7 hours. Some products infuse much faster (because the concentration is higher).

It takes about 6 months to really know whether it is helping, but you may notice improvement the first or second month.

Hope this helps.

I hope I didn't sound too negative about reactions. I just want to be informative so you don't have any surprises. By in large, most people tolerate it quite well...with maybe some mild symptoms for a couple days.

The first 10 years I had periodic headaches that lasted a couple days along with general run down feeling for the same time period. The aseptic meningitis was very severe (normal white cell count in spinal fluid is <10...mine was over 700) and it bought me a week in the hospital followed by a full month of recovery at home. Due to the severity, we stopped infusions for over 6 years...until I just had to have for my infections.

I really think you might benefit from trying it, but you may want to try other treatments first. But most of the other treatments are designed to reduce the pain, NOT address the rott of the problem. So you end up masking the problem not fixing it. Steroids work by reducing the inflammation, so in that regards, it's IS helpful. But IVIG goes to the core and can actually make a difference in the overall problem...especially if autoimmune based.

Good luck and I hope I didn't scare you away from keeping this on the table.

Dear En Bloc,

Please, you didn't scare me off, weren't too negative and so on. I appreciate the honesty, the detail, and all your help. When it comes to such powerful treatments, I can't imagine there not being side effects, and serious ones too. I was, of course, sorry to hear that you suffered with aseptic meningitis. But I'm glad you survived the ordeal.


In the end there's no way to know how a given individual will react, so for me it could be much worse, as bad as death, or it could just barely make a dent in me, negatively or positively for that matter. There's really no way to know and from what you've said it sounds like it could be all relatively smooth sailing and the hit me suddenly.

But what you say is exactly right. I really don't care much for masking the problem but addressing it and IVIG goes to the root. I wonder though, given what you rightly note, whether I should try steroids first? My neuro did mention Prednisone, if it turned out to be autoimmune, say Sjogren's. I'm not sure I fully understand the mechanism, but is the idea that the steroid will reduce inflammation and allow the body to heal more easily, ideally at any rate? So it knocks out the immune system, suppresses it, in hopes of reducing damage/inflammation, but also thereby allowing the body to heal itself, very simplistically put?

Also, I was curious to what extent these many years of IVIG have healed you. Have you had any followup biopsies, say back when, before the incident? Perhaps it hasn't cured you, but has it healed you somewhat? Or perhaps it stopped the progress? Originally I didn't realize that you had been receiving the treatment for sometime years ago, but now that I know, I'm curious whether they used any markers to measure any progress or maintenance, not that this is easy to do.

Finally, there other day I posted this, but have not heard anything back that addresses the question, so I thought I'd mention it to you, in case you had some knowledge here: http://neurotalk.psychcentral.com/thread230404.html.

Thanks again for this very helpful back and forth.

I have to say: well, damn! The side effects of Prednisone are many and seriously bad! Not sure I'd want to go on it.

It's really hard to say whether the IVIG has 'healed' me in any way. All I can report is the changes that have happened since being on it. Keep in mind that although I started receiving IVIG 18 years ago, it was started for my immune deficiency, so a much lower dose than typically used for neuropathy. I did receive a 5 day high dose course of IVIG at this time for neuropathy, but no follow-up at the higher dose.

I hope to have another skin biopsy in 2016 to compare with my last ones done in 2009 & 2010. At the time, my density wasn't too bad, but the morphological changes were significant showing segmented, tortuous and swollen fibers in most of the SIX locations of biopsy (my doctor did ankle, knee, & thigh on both legs). This is where I think I'll see the biggest changes and proof of the IVIG working or not. I plan to see my neuro/rheumy at Hopkins in Feb/March, and maybe I can get it done in April or May (all depending on how backed up they are). I honestly think it WILL show improvement, but I want the proof.

Let me tell you a little about steroids. Although they have a ability to reduce inflammation and allow for better healing of the nerves...this all comes at a hefty price...a life long price in some cases. Steroids carry even HIGHER risks than IVIG (In my opinion). I say this because the damage done by steroids can be permanent (in many cases) with damage to joints, bone density, skin, GI, diabetes, infections...the list goes on and on. Not to mention that steroids have just as horrific withdrawal syndrome as any narcotic that can take months if not years to get completely off the steroids.

I do, however, think a short course of steroids to see if the neuropathy is inflammatory based is a good idea...as it will also tell you whether it helped to reduce the inflammation, which can allow the nerves to heal. It's what you do with this information afterward that can be hard to decide.

I too have experienced the negative side-effects of steroids...and now have Cushing's disorder from taking too much. i can also NEVER stop taking one of my corticodsteroid/mineralocorticoid BP meds (steroids based) because now my body no longer makes this on it's own. Just one of the many gifts of steroids.

Steroids are really scary to deal with in the long term...which is one thing the doctors don't think too much about...their goal being to help you in the 'now'. Just be careful which ever way you go. If you try steroids, make sure it's a short course...just long enough to learn whether it is inflammatory based and whether the steroids helped...then stop and re-group to decide how best to approach along with considering all the other options out there (like IVIG). Make informed/educated decisions.

I have IVIG monthly for Immune Deficiency. Our Immune System protects us from pathogens, and mine is deficient. So I got lots of infections.

Now I don't get infections.

It hasn't affected my neuropathy at all. But it isn't at a dosage that is designed for neuropathy. And I understand that only a demyelinating sort of neuropathy can be helped with high doses of IVIG.

I do have demyelinating neuropathy...but it is profound, and I don't think the damage can be undone.

Anyway, that isn't on the table.

But the treatment is entirely safe. Only some people have difficult reactions to the process of infusion. I have NO problem with the infusion, but my own Immune System doesn't WANT the added IgG, so I have to take Medrol to stop the side effect when my Immune system kicks up a fuss over the 'guest IgG.'

It all works out and I go once a month and can tell anyone about the procedure who wants more information.

Hugs, ElaineD

I also have had IVIG for neuropathy. My insurance covered it with no problem because there was an antibody found in my lab work suggested my immune system possibly causing the neuropathy. (CIDP) It is harder for the insurance companies to deny when there is something found to support the use.
As for "healing", I was told, the IVIG was suppose to put out the immune attack, in hopes that my nerves would heal. But that the IVIG itself does not "heal" them. This information was from my neurologist a few years ago--so possibly findings on it have changed.

Thank you for this, En Bloc. I appreciate all the information and advice.

I'm sorry to hear that steroids have been so harmful to you. Just wow! Honestly, after what I've read and what you've written, I'm very hesitant to try them even for a short while to see if inflammation is the issue. Of course, that's partly because I can't see how it's not, or that it clearly is in my case. How long were you on them and how long were you thinking would be 'short term' so I could see some results? Honestly, I am improving or seem to be without any meds and taking such powerful and horrible poisons is really not at the top of my list. But we'll see. You should have seen my neuro just casually say 'if we find out it's Sjogren's then at least we can start you on Prednisone.' Poisons! Thank you again for your honest and informative view.

I see about the healing and IVIG. Well, I'll stay tuned to hear about your improved morphology on the next biopsy. :) In my case, they just did one spot: distal limb/calf.

BTW, I did finally get my appointment with the rheumatologist here: May! Well, I just might have to head south and visit Mayo for some more efficient attention. It's free here, sure, but I would have to wait till May for a biopsy, if he does it then and there and then another 3-4 months for the result. Can you believe that?!

That is such a typical response...oh, it's Sjogren's, well let's start you on Prednisone! Wrong! A short course of Prednisone during flares is one thing, but don't ever consider a maintenance course, like some doctors prescribe for autoimmune conditions. You'll never get off them and end up with possible life-long conditions as a bonus.

A short course would be a taper dose pack...about 7-10 days. They can start at various levels, but typically for inflammatory neuropathy they would start at 40 or 60 mg for 2 days, then drop 10-20 mg every 2-3 days until off. You would know in just a few days if it's going to help at all (as symptoms would subside or at least be reduced). If nothing improves in 3-4 days (on the higher doses), I would just stop...which you can do if less than 5 days. Anything longer than 5-7 days must require a taper, or you will have withdrawal syndrome.

May will be here before you know it...and since you are improving at the moment, you should consider just waiting for that appointment.

Thanks, Elaine. I appreciate you sharing your experience. It's not on the table yet for me either, but I'm trying to be as informed as possible for when/if the physicians recommend some course of treatment. I'm glad it has helped you with your weak immune system. I imagine that the side effects increase with higher doses, say like what En Bloc has for her SFN. I'm not sure what's going on with my immune system at this point, though wish I did.

Wishing you good health or at least less pain!

Interesting, thank you. So you've had both IVIG and stem cell? How long did you have IVIG? Presumably if the IVIG aids or supplements the immune system and its deficiency, then it should also help it heal, but what do I know. From what I've read so far, it seems that's possible. I have to look into a couple more studies.

Well, physicians today are drug pushers, nothing more really. I didn't even know what it was when he said that, otherwise he would have heard something from me. He's a good neuro and listens and dialogues, so I'll be fine. And my physicians always ask me if I'm willing to take even the simplest meds before they prescribe for me. I've never been on a prescription medication save for antibiotics and even then I've rejected most attempts. Anyway, it's quite sad that they're so nonchalant about such powerful and potential destructive meds. If it comes to that, I may do what you say, dose wise, but like not unless I've become much, much worse.

Right, maybe I'll wait, especially since I am improving. But I also suspect other things, well, one really: amyloidosis. If I can get a fat pad biopsy here, then I may just stick around and wait for it. I also wouldn't get the lip biopsy results until August or so, believe it or not, and that's several months down the road.

Can I ask, what do you think about my situation compared to yours, given that I'm improving? It's strange though, since I have developed some new regions of symptoms, so more in my face, the dry mouth, etc. in the last few months, but the main symptoms did only begin about 8 or so months ago. Of course, as I've mentioned in my story, I've noticed signs of neuropathy going back a year, possibly two and even three before the big and obvious onset several months ago. Basically, I'm having a bit of a strange trajectory. But overall, I'm better off than I was in the summer, certainly energy, mood, and intensity of symptoms too. But, for example, I didn't have dry mouth in the summer. Then again, after a few weeks of it being quite bad, recently it seems to have improved somewhat. I don't know: you know how it can be, coming and going, expanding and contracting, and so on and so forth. Sorry, I'm rambling now...

It is actually VERY common for symptoms of autoimmune based neuropathy (and just the autoimmune disease itself) to wax & wane. I really don't know anyone who hasn't experienced waxing and waning of symptoms...it just comes with the disease process. I don't mean to take the wind out of your 'improvement' sail, but you may just be experiencing a short period of decreased symptoms. It doesn't necessarily mean that it will be 'short' either...some waning can last for months, before another flare of symptoms return...or it can be days or weeks.

Your body will also naturally get used to some symptoms and you can become tolerant of these abnormal feelings and not even realize you're doing it. I have no doubts that you have noted improvement and I hope worsening symptoms don't return...or at least for a long time. Just don't be surprised if it does. It has a tendency to cause some depression when these periods of improvement fade away and things start coming back...takes a big emotional toll on the mind and body.

Just enjoy what you have right now (the improvement) and stay positive. But make note of the new areas affected. I always suggest to journal new symptoms or spreading of old symptoms as it really can help (in certain situations) for diagnostic purposes down the road. It's very easy to lose track of time and how symptoms develop when you try to back-track and remember how things evolved. Hopefully you've journaled your history to date (as far back as you can remember).

Keep your appointment in May and stay on schedule. If things start to get worse, then you can change appts.

If I'm anything, I'm a realist. Of course, this doesn't mean that I'm not also human and that unbeknownst to me hope creeps up. I can feel it at times too. As I see it, there are three possibilities, and one of them is what you describe. Regardless, even if I get full remission, it can easily come back after, say, a traumatic experience, a period of excessive stress, and so on and so forth.

So I agree with what you say, and it's pretty much how it goes. I appreciate the kind words/thoughts. The last time things got worse, a couple of months ago, after a bit of eating of things I shouldn't have including gluten (it can easily have been Celiac that caused this), it lasted for weeks and I did get quite low. Things have since improved quite a lot, including with the additions of B12, a B complex and D.

Anyway, I suppose I'm saying that I agree with you, but that there are those with my situation who do just continue to improve and then things are never as bad for them, and usually they present like me: acute or subacute. I just need to not get my hopes up...easier said than done. But at this point I'm pretty sure I have myself a life long illness. I do think that however crappy it is that this happened at such a young age, that it did gives me the advantage of youth when it come to healing my body. I also do have very strong genetics in my family, which is promising and another reason I suspect some infection at the root of all this. But the future is uncertain, so we shall see.

Oh, and I have a pretty good memory, so I've not taken notes, but that's silly of me and things eventually become hazy. I've been meaning to do this for a while, but keep putting it off. I think I'll take your note and advice as the push to finally do it. Thank you, En Bloc. :)

The test you had (from Immco) is brand new. I'm not sure how accurate it is. Some doctors say it is, yet others say it hasn't been backed up with clinical studies, etc. It's mostly used by ophthalmologists according to what I've read. Rheumatologists and neurologists use the serum SSA & SSB markers for diagnostics...AND the lip biopsy for confirmation (as 40% of serum labs are negative, even though the patients really do HAVE Sjogren's).

It certainly sounds as if you have a possible autoimmune basis to your SFN but odd that you don't have dry eyes/ or mouth, so maybe it's not Sjogren's. Whatever is causing it, you need aggressive treatment before your nerve damage becomes permanent. I know IVIG sounds scary, but it really isn't that bad and most people tolerate it just fine.

You don't mention any other treatments you've tried. What have you tried? Before considering IVIG or other big guns, you need to try meds like Neurontin, Lyrica, Cymbalta, Nortriptyline, etc. I'm a bit shocked that you have dealt with this for 5+ years and have no treatment! Please tell me this isn't the case and that I've misunderstood you.

Hi Marie,

I don't know about that test, but En Bloc clearly does. From the little of Know the most accurate test is the lip biopsy, which I'll push for in my own case. My ANA came back negative and I didn't know any other Sjogren's/autoimmune related testing. I had dry mouth but that's entirely gone at this point. I have issues with my eyes now and then, but it's not really dryness, or perhaps not typical.

On IVIG and treatment, En Bloc is the best to ask, since I am knew to this and so far I've received no treatment. But from what I've read, aggressive treatment may just be the best course for progressing SFN. Mine spread all over within a few months, and was pretty much all over already when it started, and has since remained stable and perhaps even improved in some respect. For that reason I haven't pursued medical treatment but continued my own natural course of treatment. That's for now at any rate. En Bloc has had to deal with the medical establishment and medical treatment, so she is the best to ask about this stuff.

I am so sorry your SFN is progressing and causing you such problems. I do hope you get good care for it. Have you tried diet and natural supplementation? I recall you may have, but can't be sure. They have helped me immensely.

Thanks for this information: I was diagnosed with PN last November from an EMG test in my lower limbs. Since then symptoms have progressed to full body so I'm scheduled for another EMG test next Monday. The full body symptoms started with a feeling of vibrating from the chin down. I feel this when I am at rest. Of course, I have all of the other PN symptoms as well with numb feet and stiff ankles and balance issues and hands beginning to be "clumsy".
Is the vibration feeling typical of CIDP ?