Search results

I don't know how we could possibly know this with 100% certainty? In the 3+ years that I have been on the boards, I have seen constant times when someone posts of an improvement, and they are told that we can't prove why the improvement occurred, or if it was "placebo" or a "spontaneous...

What is "Relapsing Polychondritis" (RP) and how do the symptoms present? (I apologize, I do not have time to Google it right now but plan to later). I have been so curious what ended up happening with your C3 (and C4?) deficiency? Is that definite and is Plaquenil the main treatment? I plan...

I vaguely remember this, too, although I do not remember the specifics.

That's what I keep thinking, too, and am not sure (yet) why 30% response rate is so bad? (Unless the 30% was from the placebo group). My understanding is that (even though still very little is known about POTS by the average doctor), there are several sub-types of POTS and one of them is...

My experience, if you decide to bother with this, is that Whole Foods will take anything back for any reason, including food, and including if it has been opened, even without a receipt. I do not do it frequently but there were times I opened food that was moldy/spoiled or I bought the wrong...

Interesting thoughts re: Unrest, and I wanted to reply, but I know it is off topic, too, so will wait and reply in a future thread!

That was my reaction, too, and I want to learn more about the group who was in the 30%.

I don't actually understand what the final statistics are re: the responders but if it is 30% (from the Ritux group and not the placebo group), then I am very interested to learn more about that 30% and what auto-antibodies they had. When I went to the screening of "Unrest", in the Q&A after...

Alvin, I am still thinking it is the people with auto-antibodies who are the potential responders but I have always wondered what is the overlap between autoimmunity and those with MCAS and/or toxic mold exposure?

I don't know what this means? I meant that each illness has certain unique terminology and when multiple docs told me that I had "CFS" in 2013 and 2014, and I had no idea what was wrong with me, I believed them. When I found PR, I thought "PEM" was the proper term to use until I figured out...

Alvin, you are correct that I have never experienced PEM. I was given a diagnosis of "CFS" by several doctors in 2013 and told there was no treatment and believed this was my fate until I found PR. I used the word "PEM" in posts when I first joined PR in 2014, because I assumed that this was...

Good for you @Sunshine3 and I agree with you that all hope is not lost. "Onward" is the only way to go and I am so proud of you and all you've been through to keep fighting and I really mean this. We are all rock stars!

I thought that too and am kind of surprised but I know nothing about how these studies work!

I absolutely believe this as well. From one of the posts above, it looks like the patients in the study received 500 mg of Ritux (regardless of BSA formula used in autoimmune dosing) and this seems like a low dose to me. It is lower than what I received and I am a relatively small person. I...

I didn't know which category I was in and found your post really interesting. I never understood the difference between autoimmune or auto-inflammatory (except for inflammation markers like CRP or ESR). No weirder than I am :wtf::facepalm::alien:... Thanks and you are right that I have...

@Inara, thanks for explaining and this is horrible! My understanding is that the Rituximab that I received came from Genentech (the American pharma company who makes it) to the pharmacy directly at my infusion center. I hope it is off the market and that cancer and autoimmune patients are not...

Thanks @Woolie and I was just curious and trying to relate this to my own case which doesn't quite seem to fit in anywhere. My doctor said that I have a "B cell dependent autoimmune disease" and that my symptoms are auto-antibody driven but he has never used the word "auto-inflammatory" in my...

I don't understand the quote but does it mean that in 2005 to 2015 there was a "fake" version of Rituximab in use in Germany (or elsewhere)? I assume, if so, that it is off the market now?!!

@Woolie that was an excellent write up (for someone with my level of science background!) and in general. If I understand it correctly, my illness would be "autoimmune" vs. "autoinflammatory" b/c I never feel "sick" (minus some post IVIG reactions) and I do test positive for multiple...

According to the research, FQ antibiotic injuries can appear many months after finishing the antibiotic which makes them so difficult to diagnose b/c people often do not make the connection. I have NO idea if this is the cause of your injury, only that the time delay is common. In my...