Treatments
 

I have had a bad couple of weeks. I believe I mentioned that I have been getting IVIG for several months now. My rheumo also started me on enbrel 4 weeks ago. I had a reaction that looked like cellulitis to me from the enbrel. Even though the doctor put me on antibiotics he said I could still take my shot last week. I didn't do it. I wanted to get off the antibiotic first.

Has anyone had a skin reaction to enbrel before? I have dark marks at all four injection sites thus far. It appears each week they get a little bigger. They r usually red at first. None of the others were nearly as bad as the last one. Has anyone ever had this happen and if so are the dark spots permanent.

I think the IVIG helps a little at least with leg weakness. That is what really scars me. The leg weakness. My legs sometimes just feel so weak getting off the sofa and going to my kitchen.

I'm still waiting to hear if the NIH will see me. I hope so. My neurologist does not seem to know what is causing the muscle weakness and said he would rather not do a muscle biopsy if NIH will see me.

For those of you who get IVIG, do you feel like there is a war going on in your body for a few days after the treatment? I hear others say they have no s/e from it and wonder if I'm crazy.

I sometimes feel like the treatments will kill me one day. Does anyone know if you are on disability can you refuse treatments recommended by the doctor writing for you to be out? He next wants to try rituxan.

I really wish we could find something that would work for this pain but I don't want to get lymphoma etc from the treatment that is suppose to help me.

I'm just frustrated. Thanks :(

Just goggling enbrel side effects brings up the following:

Quote:

Injection site reactions are mild to moderate (redness, itching, pain, swelling, bleeding, and bruising) and usually go away within 3 to 5 days. If you have pain, redness, or swelling around the injection site that doesn't go away or gets worse, call your doctor. Serious side effects of ENBREL. Risk of infection. Safety Information and Side Effects of Enbrel® (etanercept) www.enbrel.com/possible-side-effects.jspx

Doc

I took Enbrel for a few years and then switched to Humira before stopping the medication in 2012 when I began to have symptoms of nerve damage.
I cannot say if I have SFPN due to my autoimmune condition or if the Enbrel/Humira could have caused it. But, I would strongly suggest that you read the fine print for these drugs because they can definitely cause nerve damage.
As for the IVIg, I am now getting ready to have my 4th round and can sya that it helps with my energy, but has not helped with the neuropathy yet.
In my opinon, it took a while for the neuropathy to come on and get bad enough to cause issues with everyday life, so it will take a while for IVIg to help unless you started taking IVIg the minute you noticed the 1st symptom of neuropathy.
So, give the IVIg a chance, but it could take a while.