Hello Everyone. Newbie here. I'm rather verbose so I apologize in advance and will try to keep this short. I have Sjogren's Syndrome which has manifested itself in small fiber/ autonomic neuropathy. Forgive me if I am in the wrong place, but I am told that these are peripheral neuropathy??? I am very confused over the whole thing, even though I've had this for at least 5 years now.

The pain has been controlled so that I do not want to throw myself into traffic any longer, but now I am losing sensation in my extremities. Two sprained ankles in the past 6 months, dropping things, etc. So I finally had my first IVIG treatment last Weds and I have some questions about what I'm experiencing and what I might expect to experience.

I received Gamaguard 70 grams (if grams isn't right IDK what the measurement is, but it was 70??) Over a 2 day period. The first day they had me there for 6 hours, but I got a mother of a migraine that night, so they slowed it down and gave it to me over 8 hrs the next day. I was twitching the entire time. Almost like when a Looney Toons character gets electrocuted. Not as violent, but that's what I felt as though I looked like. I have been twitching like that every night since the first infusion (3 nights). So basically it's as though I'm in a Sjogren's "flare" because this what happens when I'm flaring.

When I got home, I could not believe it, but I could feel my feet and legs!!! That fast!! I never thought I'd be happy to feel my bones aching!! It was like that after the second day of treatment as well and the next day, but I actually felt much more. Today is the second full day after the last treatment and the numbness is returning almost full blown... just as fast as it went away. Is this normal??? What does this mean?

Any experience, input, advice... anything, will be greatly appreciated. Thank you all! So glad to have found this forum!

Peace and blessings,

~Annie

Hello and welcome to NeuroTalk.

I too have neurological complications of Sjogren's, in the form of PN as well as severe autonomic neuropathy.

I also receive IVIG, but my dosing is for my immune deficiency, not PN. It is felt that my neuropathy is beyond repair at this stage, as it has damaged the dorsal root ganglia.

The symptoms you describe during your IVIG should be reported to your doctor. The 'twitching' sounds like it might be fasciculations. If you've had this twitching before, then the IVIG likely just created a flare. If you have not had this twitching before, then it may be a sign of a reaction and should be brought to your doctors attention.

http://en.wikipedia.org/wiki/Fasciculation

As for the numbness, I would guess the sudden and short lived improvement was NOT the IVIG. The antibodies from IVIG last for approx 21 days, so it doesn't really make sense for it to only last 2 days. It sounds more like something that would happen from steroids given as a pre-med (to avert reactions). Did you receive steroids right before the infusion? Also, steroids only last a couple days...so this sounds more like what you may have benefited from.

If your neuropathy is inflammatory in nature, then immediate improvement from steroids makes perfect sense...and then it would return to original levels in just a few days. I would make sure to tell your doctor, as it might be helpful in their diagnostics.

How often are you receiving the IVIG? I would give it a few more infusions to see how helpful it is. Also make note of the improvement in numbness (and any other symptoms) on a journal or otherwise to see if it relates more toward the IVIG or steroids (if you receive them---most everyone getting IVIG does).

Hi again. =)

Thank you for the warm welcome. I want to respond here on this board as well for continuity and because I'm not sure how much you share on the other board.

I am very sorry to hear about the damage they feel has been done to the dorsal root ganglia. Are there any treatments or therapies that you're still pursuing? There's always hope. I'm certain that you've heard this already though.

I'm going to call the IVIG office today and see, but I'm fairly certain that they did not give me steroids on the first day of IVIG because I have Cushing's syndrome and I'm on a tapered dose of steroids. My rheumy and I are of the same mind with taking the steroids, and that is only if if it's absolutely necessary with no other alternative. I'm thinking that he assumed that the small dose (9 mg.) that I'm on, would cover it. The second day is when the nurse told me that he had ordered it for my I.V. Again, it would make perfect sense though, if I had steroids that first day.

By the way, if it were to be inflammatory, would it not be the SjS then? This is what we've been blaming it on. In fact, rheumy dx me with both SjS and PN based on symptoms alone, saying that I clearly had inflammation, as "such and such was present." This was before QSART and TILT Table came back positive but i still, to this day, always have neg. blood work for inflammation. He says "Look! You're inflamed!" Lol

The twitching is a normal flare symptom for me, only these were definitely brought on by the IVIG. They have been slowly diminishing since Saturday night, which was the day after the last treatment.

I did begin keeping a journal which I need to update or I'm going to mess things up for sure, so thank you for reminding me. Okay, you don't need to post on both boards.=) Like I said wanted to post here for continuity and maybe people here will know that I'm not so bad knowing that you "know" me a bit.... you give me some street cred. =) Thank you!!

~Annie

I have to admit, that I did NOT associate you with the other board. Although the name did ring a bell, I hadn't put it together until I went back to the Sjogren's board and saw your post there...and had an, ah ha, moment. I felt I little stupid for not picking up on it sooner.

With the Cushing's, it changes how your body responds. It would be interesting to see if you received steroids before that first dose. And what the doctor has to say about your response.

Yes, Sjogren's can cause inflammation...to include neuro inflammation in some people. Just like antibody markers, not everyone tests positive even when inflammation is present. I have known inflammation (confirmed through biopsy or other procedures), yet standard labs don't always reflect it. I have no idea why