My blood shows minimal inflammation which is frustrating. My eye problem is iritis, inflammation of eye due to autoimmune attack. My joints are inflammatory reactions too. I tried corticosteroid shot and one week if prednisone which didn't help the neuropathy.
I do feel that my neuropathy is much worse since stopping the enbrel, not that I had improvements on that.

En bloc, do you know from your latest rheum visit whether a biologic may be used in conjunction with IVIG?

I actually just left from an appt at Hopkins and was told that YES, a biologic can be used in conjunction with IVIG...but it is risky in my case because my use of IVIG is not just for neuropathy. I am immune deficient and therefore use of a biologic that further suppresses my already deficient immune system is very risky. But otherwise (for most other people), biologics can be used with IVIG according the inflammatory arthritis rheumy I saw today.

As for the bloods showing minimal inflammation...this is what I meant by the labs not being very accurate. They should not be relying on them to base your level of inflammation. The one week of steroids you got may not have even been enough to know whether it would have been helpful. How much did you receive daily?

Your neuropathy also may not be inflammatory based and that should be further documentation for the use of IVIG.

Thankyou en bloc, really helpful as always, I appreciate it. :-)
The steroids tablets were 50mg I think. I took them for a week and the neuropathy was the same, but appreciate that it probably wouldn't miraculously disappear as nerve damage is nerve damage. I have an appointment this Friday at the gps to ask for a next stage pain med, I am going to ask for a corticosteroid shot to see what it does. If it helps all my other stuff that would be great. I have alot of pain in my face behind my eye and I now recall my neuro saying the last mri shiwed inflammation within the whole left side of ny face and sinus. I know I have inflammation everywhere from my other non neuropathy symptoms.

Sorry to go on about Ivig but do you know if its a non inflammatory mechanism behind the neuropathy whether ivig will then be of any use? My biopsy just showed outright reduction of nerves rather than inflammation.

Hi. I'm not sure if you know that a rare side effect of any tnf-a inhibitors, (Embrel), is neuropathy. It can be sfn, sensory, sensory motor, and cns. There is a contraindication for taking it with any type of neuropathy in some publications. There's lots of info if you google tnf-a induced neuropathy. Much info comes from chrons.

Have you had an emg/ncs recently? Do you have weakness or only pain?

Oh yes, even when PN/SFN is non-inflammatory, the IVIG can be helpful. Probably used more often in this scenario rather than for inflammatory based neuropathy (because they typically use long term steroids for this type, due to lower cost).

If you can get approval of an IVIG trial, then make sure to request (after the trial) to have a repeat biopsy. If the nerve density improves, it will help greatly to get continued treatment.

I think I need a do over.
I just wanted to bring awareness that sometimes TNF-A medications can cause an immune mediated response that may be acute or very slowly over a long period of time. Sometimes the response stops when the med is discontinued, sometimes it keeps going. If it is recognized it can be treated with ivig and the damage is stopped and reversed. I know this because it is not uncommon in the cidp community.

This article describes, 3rd paragraph from bottom

http://emedicine.medscape.com/articl...65-clinical#b5

I brought this up for awareness and I don't know your history. If there's a sliver of a chance this could help I had to post it.

Take care

I think your point was noted the first time. However she said she had the nerve damage 'before' taking the Embrel and stopped it due to worry about the nerve damage (that already existed).

Thanks for your informative link.

If she gets the IVIG then it would cover this connection anyway.

Thanks all.

February, appreciate the info. Sadly ii developed sfn before any treatment and the neuro and rheum both felt enbrel would be worth a try as excessive tnfa I have due to ankylosing spondylitis may be behind sfn. Only 3 reported cases of enbrel enduced sfn were found when neuro and I did research. It's an absolute nightmare. Sit here every day asking myself whether I should re inject the enbrel stacked up in my fridge.
Enbrel is much more commonly associated with demylinating neuropathies is my understanding. It's still a huge shot in the dark taking it in my case. It does however have really food results in treating my original disease ankylosing spondylitis.
Can I please have some new non defective genes if anyone knows where I can find some :-)

I understand the challenges of deciding the lesser evil of treatments vs disease. I didn't want to cause you any unnecessary worry. Honestly, having worst case cidp, I am not worried about demyelination because myelin heals. What does worry me is not figuring out the cause. I have been very fortunate to figure out many triggers. I wish for you the same. Good luck in your pursuit for ivig.