Originally Posted by en bloc

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.

Originally Posted by ElaineD

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

Originally Posted by northerngal

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.

Originally Posted by en bloc

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.

Originally Posted by en bloc

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.