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.