Ivig
 

Hi all, I have had two loads of ivig now, aboutv6 weeks apart. After the first lot I felt the SFN
had flared somewhat in usually calmer places such as my arms and back generally and I felt no benefit. I recently had a second load - about 2 weeks ago now - and I hate to accept this but I feel worse. The neuropathy is stronger and I feel greater weakness in my legs and arms as well as the pain.
Whilst in hospital I had a small dose of methprednisone each day to counteract allergic reaction. Whilst in hospital I felt much better and I don't recall feeling the SFN pain so much. This could be for all sorts of reasons but once done and home it seems to flare. In the final day this time round my veins kept bursting so we had ten attempts at putting a line in and my arms and hands were covered in huge bruises. Got there in the end but that really made me question what the hell was going on with that and why my veins did that.
The neurologist agrees we should prob leave the ivig now and I'm inclined to agree. But, my symptoms are bad and it's just rampaging. I can't just forget it and accept it. The neurologist has asked if I'd be up for 5 days of iv methprednisone (steroids). I am scared stiff of making things worse again. But options are limited.
Is this really risky? The cause isn't entirely clear, but I have NLD SFN and it's everywhere. I have another autoimmune illness so we suspect autoimmunity here.

Reposted from IVIG or not to IVIG:

Hi Joanna...thanks for your comment...I read your most recent post re: your IVIG and was hoping that you were going to report some good news...and I am sorry that was not the case. I have read a few posts...not on this site if I remember correctly that sometimes SFN gets worse before it gets better after starting IVIG...but I am no doc and I am sure your neuro would know better than me...did he say anything about that? Or encourage you to stick with it for a bit longer? Although I completely understand you stopping if the pain was bad...this type of pain can be so debilitating. I got the flu in early Jan of this year and it set off my SFN...I was curled up into a ball with ravenous skin pain and burning for about 3 days...and if I do IVIG and feel that pain I would delay it. This disease is so unpredictable and unexplainable...wish we had more ideas of its make up and etiology.

I do believe I have an inflammation type of SFN...when I get some burning going on I have two defenses...I take aspirin which helps with the pain in about 15 to 30 mins. and if I need immediate help I fill my tub with cold water and put my hands and feet in and the pain goes away immediately. I agree with you that blood tests are not the complete answer to AI issues...I am sure there is alot more going on inside our bodies that we can't measure thru pokes and prods.

Speaking of the steroid infusion...in hind sight I think if I had a high dose M prednisone in the first few weeks of the onset...I would be doing better and maybe more of us would be leading more pain free lives...but the first neuro I visited just said...its just stress and it will go away instead of taking immediate action. It just seems like they are afraid to act...why? There was no deep concern or urgency...it should be "OH S%&T!...these symptoms he is explaining to me can cause CHRONIC pain...I better get him on some type of inflammatory control protocol." This is what should happen when people show up at Neuro offices complaining of these symptoms. I am sorry...I am venting a bit.

I hope that you find a treatment that works...if I do go for IVIG I will keep everyone posted on its effects.

Sven