another med to be added

[Deb 27]

hi irish, I'm fairly new here and learning a lot from reading people's posts and what SJS can do to us. I just wanted to say that I wish you the best and sorry you are going through a rough patch. It sounds like you have an awesome medical team.

[PattyAnn]

Hi Irish

I am new here, I have been exploring this board , and have read many of your posts. You are a very kind, informative person, and I can see you have been through a lot.

I am thinking of you, and hope you are feeling better soon

[Poppy]

Thanks for the explanation Irish.

[irish]

I take the IVIG for my Myasthenia gravis and I do have low t-cells. My t-cells have not been checked for a couple of years but my white cells are all in normal range right now which is highly unusual.

Actually, my infections have been less and not nearly as bad as they used to be. I did have the mycobacterium infection years ago while on methotrexate but was not even diagnosed with myasthenia, hashimotos or low t-cells at that time. I was not on the ivig either.

My doctors have been watching me for years and checking my blood work, etc and at this time they feel that being on the IVIG should protect me. Also, my doctor has worked with bone marrow transplants for years and other immune deficiencies and feels it is worth trying the methotrexate because I was on the cellcept without any infections --- the dosages that we take for autoimmune is so much less than what they give for cancer that doc says the risk of infection is not as high as one would think.

I am still addressing all the aspects of this and right now am trying to sort out my physical issues, etc related to an immune suppressant. Also, my doc thinks that it is possible that my low t-cells may improve with the methotrexate as they are not for sure what is causing them. They could be more related to the myasthenia gravis than an immune deficiency. My doc can explain this stuff and he understands it but I sure don't.

I used to culture out all kinds of bad bacteria years ago and have all kinds of terrible symptoms but my symptoms have been much less and seldom culture out much other than yeast. I am to the point where I am thinking that a lot of my "infections" are an increase in mucus associated with lymphoid tissue in my throat. Time will tell. I know that if I stop my plaquenil things get worse and when I restart it some of the symptoms decrease. Really, really weird. Irish

[aussie mum]

Dear Irish,
I'm sorry to see that you've been experiencing more symptoms. You have been through so much.
I hope the tweaking of you medications help you to feel better soon.

Sending you many gentle ((hugs)) from OZ.