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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Yes, but if you have infections or a suppressed immune system already, you might not be able to fight off infections which could be fatal with the hydrocortisone.
That could also happen with cyclophosphamide though right?Yes, but if you have infections or a suppressed immune system already, you might not be able to fight off infections which could be fatal with the hydrocortisone.
Also, rather than high dose hydrocortisone, there are stronger steroids like prednisone, dexamethasone, or Solumedrol. But the risks/side effects are stronger, too.
Those are questions for an infectious disease doctor or immunologist.
From what I understand of your situation you likely have active infections as well as suppressed immune function, so suppressing your immune system could be dangerous.
@Gingergrrl I think it should be clear and obvious to anyone who is following you on this board that you are trying to help other members wherever possible and that you are not seeking to disparage any other individual or group of patients. To be honest, I think that is an absurd accusation that I can only imagine must have been some kind of misunderstanding on @Joh's part.
@Gingergrrl, please do not stop posting on this subject. You have been generous with your time and have gone to great effort to provide detailed information about your situation, which is quite helpful in putting the treatments you have chosen in context. Not every treatment will be right for all of us, so it is incredibly important to understand why people are doing what they're doing, the context, and what the results are.
Yes i'm seeing an infectious disease dr in a few weeks, though the problem is that since they don't know me/cfs they can't fathom these kind of symptoms being from an infection
I can't imagine that their higher desperation is the reason and find this quite insulting and unfair. You are the lucky ones with lab abnormalities that can be targeted by treatments. I envy everybody with autoimmunity and I would start treatments tomorrow because there's a range of possible treatment options (IVIG, Rituximab, plasmapharesis) and it's even possible to fight the insurance over it. Imagine you feel like dying for decades every day, but have no interesting lab abnormalities - nothing you can do, nothing you can fight your insurance over, no lead for doctors. Welcome to the world of ME/CFS. The reason is not, that these people are not as daring or proactive, as your group smugly seems to think. I find this really insulting and you apparently have no idea how it feels to not have your level of misery reflected in lab tests and no one to believe you because of the lab tests and to regularly ask yourself if you're crazy because nothing shows up and to not have Cell Trend and doctors interested in your case because it's so special. Ever wondered why the suicide rate is so high in ME?
There was one UK patient here on PR that had very clear evidence of abnormal antibodies and some CNS autoimmune process, but was refused treatment by the best doctors in UK and had to travel to China to get treatment.
Had a six hour ritux infusion yesterday. Had a reaction (itchy throat and scalp) at the 200 Mg stage which was treated with Benadryl. An hour later we started up again with no problems. Next is in a fortnight. Fingers crossed it will do its thing on the B cells and steroids can be reduced or eliminated.
@Jonathan Edwards Thank you for sharing your thoughts, as I said, I am also sceptical, although as probably all CFS patients I tend to desperately look for the next straw to grab and after the hype we've seen, it is hard to let Rituximab go, and I can understand patients who - despite the advice not to try it - ultimately decide to grab that straw.
May I perhaps ask you about your opinion about Cyclophosphamide as a possible treatment option? Dr Mella appears to be much more optimistic about this drug. Again quoting the subtitles from the video above:
"The Cyclo-Study where we used Cyclophosphamide has preliminary very good data. Many patients are reporting improvement, but the problem is that it is less well tolerated than Rituximab. Particularly subjective, nausea is a significant problem and we are a little unclear about what to do next. When we look at the Rituximab data, we see that in order to be certain what effects we are really looking at, then we need to do a form of double blind study, at least a study that can say something about that are in operation in the study. So we are thinking about making a double blind study on Cyclophosphamide. It is difficult because the substance causes nausea. Even if we give a lot of anti-nausea medication, there are some patients who become nauseous and there is more nausea among ME patients than in cancer patients. This is a treatment we provide daily at the cancer ward. Cancer patients rarely get nauseous when they get the anti-nausea medication, whereas ME patients in fact do. So the tolerance is worse in ME patients than in cancer patients. So we are currently in the thinking stage when it comes to Cyclophosphamide. But we must remind ourselves that when we had the first patient observations, it was with chemotherapy that contained either ifosfamide or Cyclophosphamide. It might be that the nonspecific immunosuppression cyclophosphamide provides may become a therapeutic offer for patients in the future."
Dr. Chia has reported using for his son, but that he had a very difficult time with it and no longer uses it for patients. I believe he discussed this during his ME/CFS Alert video interview with Llewellyn King...not sure which one as there were multiple episodes with Dr. Chia.Interferon is used in MS does it have any use for ME