Reply To: For those who get regular IVIG infusions, how often do you get them?
Your symptoms sound pretty close to what how I felt at my worst. And I understand about work. I have to keep insurance, pay bills, but it exhausts me. I also understand about driving. I still have to concentrate extra when I drive.
So first question. When was your first treatment with IVIg? Are you taking anything else like prednisone or another immune system suppressant?
My first round of IVIg was on Jan 3 of this year. It helped a great deal and I peaked at about 75% of my old self. About March 1 I kept thinking to myself I’m slipping and last week I got another 5 day round of IVIg.—-Which let me say has wiped me out. I think I had let myself really regress and I’m recovering from a pretty deep hole.
Which lead me to get a second opinion yesterday. The new Doc thinks part of my problem is the prednisone weakening some muscles and creating other issues which make me feel ill.
The other thing he was genuinely upset with was the application of IVIg by the other doctor. He blames my current relapse on not having a maintenance regime of IVIg.
For instance, he said I should have received a monthly round of infusions after my initial IVIg treatment in January as its effects only last so long.
So as to your initial question, in January, after treatments with IVIg, I saw immediate and progressive improvement over a month. It wasn’t linear, but the trend was always positive. That lasted to about March 1st.
After last week’s treatments, which ended Friday, I have been wiped out physically. My legs feel weak from the knees on down and feel like they are going to buckle at work. And lifting, is killing me.
My new doctor said IVIg can have delayed effects. Give it until Friday, and if I still feel weak, call him on Monday and he will come up wth other options.
I know this is long winded, but I just wanted to let you know that I understand your symptoms and hopefully my IVIg experiences are of use.