NeuroTalk Support Groups - IVIG treatment

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - IVIG treatment (https://www.neurotalk.org/peripheral-neuropathy/229739-ivig-treatment.html)

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?!

Quote:

Originally Posted by en bloc (Post 1190982)

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.

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!

Quote:

Originally Posted by ElaineD (Post 1191970)

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

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.

Quote:

Originally Posted by northerngal (Post 1191978)

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...

Quote:

Originally Posted by en bloc (Post 1193492)

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. :)

Quote:

Originally Posted by en bloc (Post 1193537)

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.