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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. StrayCat

    Tocilizumab is amazing, anyone tried?

    Oh! I mistaken...I don't like that pink smile stamps...
  2. StrayCat

    Tocilizumab is amazing, anyone tried?

    Day 0:after the first infusion,nothing special.(0%) Day 1:He noticed that he can make voice easier than before."Why?it's strange"(I think so,too)(2%?) 4 weeks after:pain reduced.still feeling tiredness(10%) 8 weeks after:pain has gone.it is amazing!(40%) 12 weeks after:Now he doesn't feel fear...
  3. StrayCat

    Tocilizumab is amazing, anyone tried?

    He go to shopping every day.it takes about 40 minute to the shop on foot. he needs sleep 10 hours/day.he seems getting well.but get tired easily yet. He doesn't know NCNP's plan well.he said he'll ask about it doctor at next time. In Japan,the rainy season has come.its make me sick...so my...
  4. StrayCat

    Tocilizumab is amazing, anyone tried?

    at first slowly getting worse,after he has got flu,suddenly dropped.since then getting worse and worse.I don't know more details.maybe his former doctors didn't check IL-6 levels so he may not know about it.
  5. StrayCat

    Tocilizumab is amazing, anyone tried?

    No,he don't have RA and got MTX on the internet.He thought use it instead of rituximab.In Japan,MTX is the only immunosuppressant that can buy on the internet.additionally it is so cheap.
  6. StrayCat

    Tocilizumab is amazing, anyone tried?

    Thanks,everyone! He can read English.but can't speak/write well. I'm writing his proxy. He was pleased with your comments.(me too!) He went to a RA doctor and told him "I was taking MTX 6 months.it is effective,but I can't stand side effects.I wanna quit MTX,is there anything good medicine? now...
  7. StrayCat

    Tocilizumab is amazing, anyone tried?

    Thanks for your comment! Reading long English sentences is difficult for me but I'll try read that. I forgot to say,interestingly before trying tocilizumab,his CRP rebel was normal and didn't find any autoantibodies.
  8. StrayCat

    Tocilizumab is amazing, anyone tried?

    My friend was a severe ME patient.He couldn't walking alone.But he started Actemra(tocilizumab) 3 months ago.(He cheated a RA doctor.He pretended to has RA) I can't believe that how he recovered.now he can running faster than his healthy friends and getting healthier every day. (in addition,he...
  9. StrayCat

    POLL for CFS/ME sufferers who have or have not been diagnosed with Asperger's

    I have diagnosed Aspergers and AD/HD.(and I'm sure I have dysgraphia,especially chinese characters) I have some sensitivity problems(sound,noises,touch,photophobia etc) that general symptoms of these disorders. however,when my ME symptoms wasn't so severely,these problems wasn't too bad. I think...
  10. StrayCat

    how to overcome sensitivity to humidity?

    I've living in Japan since I was born.in the summer,extremely high temperature and humidity(at worst 38°C/100%).that is very hard for me...I always get worse in hot/humid place.even moisture in my breathing air(so I can't use medical masks,that is popular in japanese people as preventing...
  11. StrayCat

    Help with insomnia meds

    Hi,Previously I had insomnia.I tried all of anti-depressants,antipsychotic benzodiazepine drugs,but didn't work(only horrible side effects). Now,I take that before bedtime... •pregabalin(25mg) •clonidine(75μg) •ramelteon(2-4mg) and weekly buprenorphine patch(5mg) they don't make me sleepy,but I...
  12. StrayCat

    The Synergy Trial: Ritalin and Micronutrients

    I am taking Concerta(prolonged release methylphenidate)for AD/HD,I wonder what if I add the nutrients,works similarly...?(at least Conserta is good for my muscle weakness/pain and sleepiness)