Which difficult to obtain treatment would you most like to try?

[Gingergrrl]

I tested positive ANA and positive on RNP. No other positives but family history of autoimmune illness led me to believe that what I had was some variation of autoimmune disease not fully developed.

Sorry for my slow reply! I also test ANA positive (1:160, speckled pattern on last test in 2016) but am not sure what RNP is and will Google this. I don't really have a family history of autoimmunity that I am aware of though. We pursued my treatments b/c I had so many weird autoantibodies and I don't think we would have done it if it was just the ANA alone.

The IVIG dose was Gamunex 1000 Mg per KG every three weeks... Do not know if this is low or high dose. Dose was 75 GM.

I think high dose is 2000 mg/kg but at the moment, I might be remembering wrong so don't quote me on this! My dose is 82 grams every three weeks, which is high dose for my weight, but I was authorized to do 110 grams every three weeks so I could have gone even higher (but knew I would not tolerate that amount of IVIG or fluid volume so we stuck with the 82 grams).

Nerve Conduction test was done and showed some irregularity, Turns out the machine was not running properly or one neuro said my hands should have been put in warm water. The other two NCT were fine so never had CIDP which was a relief.

Do you know why the Neuro said your hands should have been put in warm water? Is this part of being tested specifically for CIDP? I had an EMG and NCT that were specifically for LEMS but I am still confused if there is one EMG & NCT test that is standard for all Neuro diseases or different tests for each one?

I clearly had muscle weakness and my test showed the my right phrenic nerve was only working at 57% (at that time) yet the Neuro said everything was "normal" and dismissed me on my way and I had to fight just to get a copy of the results (and he is not my current doctor).

 

[dreampop]

Jesse, I found another drug you might want to include on this list - Diacerein.

Taken together, diacerein offered a novel blueprint for cancer therapy by hampering IL-6/IL-6R/STAT3/MAPK/Akt network.

Suppression of STAT3, MAPK and Akt pathways were also observed as a consequence of diacerein-mediated upstream inhibition of IL-6/IL-6R.

I know one drug you were interested in inhibited Jak/STAT 3, there was discussion about AKT and MAPK in the mtor threads, I don't know where it was landed on with those. Diacerein is being used for osteoarthritis, although I'm not sure it's a major drug.

 

[Alexi]

Times I have been hospitalised I have been given iv saline......I like to try that