Hi enbloc & Mrs. D,
Thanks for your comments. To be honest I'm unsure why the steroids were started in the first place. I know they thought I possibly had aseptic meningitis from the Rx. That didn't happen though until they tried to give me Rx's three days in a row. I'm never doing that again.

I couldn't believe it when I went on the portal and saw the amount of solumedrol. The nurse had told me he ordered 20mgs with my Rx's. Now I know why I had such significant s/e from it. No sleep, anxious (which Im not prone to) etc. I guess I should have paid better attention. I'm usually on top of all that. I just took her word for it.

I did ask the nurse once what company they got their IVIG from but she said she didn't know. Enbloc I now know( from the portal) that I get Privigen 400 mg/kg. I don't know much about what is the normal dose for IVIG. I trusted my rheumo on this one.

I am recording my b/p a few times a day. It has been significantly lower since taking medication. I am seeing my GP next month I am going to request he retest everything. He's new for me so I don't know what he'll do. My old GP went to work in hospice. That was a big lose for me. I loved him!

This is what I'm considering and I would appreciate your opinion. I'm going to request we take the steroids out of my Rx completely. Then I'm going to consider being done with the IVIG. The one thing I notice they do help me with though is the muscle weakness. That is getting worse especially going up stairs, my legs feel like lead. I have to stop when I get up to the top of the stairs and let my legs recoup.

Mrs D. I agree with you! Big Pharm products will do us in with the s/e's. I just had a discussion with my husband about asking the doctor if he will continue to see me and sign my disability forms if I refuse these Rx's. I am afraid if he is not making that money he may not. I hate to think that about him. He is definitely a doc who believes in taking the available medications. He says that's all they have to help us. He really is a good caring guy.

Please give me your opinions on my plan of stopping the steroids all together? I would really appreciate any knowledge you are willing to share with me.

I'm off to the dermo today. I've been breaking out in hives for about 9 days now. They come and go. Really bad at night. I actually put lidoderm patches on my hand and under my arm last night to lower the itching and burning. Ugh! what next!!!

I think my hubby probably is going to turn me in. (Just kidding) he's good about all this but feels really helpless.

Thanks again!
Hopeful