in fact it’s very hard (if not impossible) to track your moves. I really cant understand people that recover to a great degree and do not make a post about it.
Lazarus,
how many times have you been on monoclonal antibodies like adalimumab, infliximab or similars?
Did they always provided you strong benefits?
Are you currently on them?
SInce 2000 for rheumatoid up until a few years ago
Symptoms did not seem as bad hard to tell as I was on and off fin throughout as never knew of pfs.
I’ve been very bad these last few years, progressively worse. Things started deteriorating rapidly jn 2015 ish when I stopped fin, then minox.
The speed has picked up with each passing year. I’ve restarted tocilizumab these past few weeks to see of it will bring down inflammation which has basically stopped me from being able to function in Al.ost every way. I had a major crash In March from sun tan lotion.
hello how are you doing on tocilizumab?
have you tried like siltuximab, tocilizumab and anakinra?
Hi sorry just noticed this…
Toc has brought the CRP down but hasnt helped much with wider pain etc. It’s taken the edge of at best. I have inflammation in many places.
I was also on rituximab and it helped but it lost its effectiveness. I retried it to with no effect.
Anakinra is probably the most exciting but criteria is strict. The RA professor avoids me like the plague but I’ll float it regardless. This drug could treat almost every symptom. It’s expensive and requires a daily injection
Hope you’re doing OK
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Do you think BC 007 could dampen the abnormal immune response some of us have to stimulants?
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Which pfs aymtpms got better?
Antibiotic tnf are autoimmune though right?
Correct yes.
Absolutely! I have created a new topic about BC007. It wonders me why it’s so quiet about this on the forum. On LC, CFS/ME and PSSD forums there is much more awareness about BC007.
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It is difficult seeing these rolling debates over years. “Is it autoimmune, is it this, is it that?”
If the effort put into these debates equalled the effort to donate …
We would be out of this situation by now.
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doesnt seems like you know how scientifical method works (and also add a Pharma barrier onto that)
Did you ever try Anakinra
Never tried it and rheum proff not up for giving it a go. I think Anakinra has legs is it suppresses Interlukin 1 which I expect is an issue in pfs
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Hi @andras33,
Does muscle pain means atrophy and what can be done to get recovery from it, at one place you had mentioned “universal muscle wastage - havent been to gym since last october, so cant comment if i can regain my muscles lost since the crash, but I return to gym soon and I’ll be able to report” Any guidance as of now I am facing tremendous pain and weakness
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anche io sto sperimentando dolore e riduzione della massa muscolare sono fortissimi ho smesso due mesi fa l’assunzione di fina. avete pensato ad assumere AGLIO contro infiammazione diffusa nel corpo?? come vanno i tuoi sintomi rispetto a 6 mesi fa?? stai meglio?
If even the biological drugs have cured it means that the inflammation will never go away as well as the loss of muscle mass and weakness. Suppressing the immune system therefore does not solve this means that there is a permanent damage at the epigenetic level that shows itself as an autoimmune disease with which it shares symptoms such as inflammation, pain and weakness. The body discards androgens at sustained rate through the liver each of us has more or less sustained speeds depending on the degree of severity of the mutation. When androgens rise, there is inflammation and increasing pain, depletion is triggered as a defense of the body. However, the inflammation remains constant and of more or less high degree. If you had had an autoimmune disease any autoimmune disease with the biological drugs you did you would have solved those drugs reset the immune system even in cancer so in my opinion the autoimmune reaction is only a manifestation of a gene mutation that unfortunately is not corrected by the suppression of the immune system. What do you think??
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that many of us develop autoimmune problems, that is already certain. You should know that most people who use immunosuppressants do not improve their symptoms, it is not a path; used -> improved. It is not always like that, unfortunately, because if it were not for us to just use immunosuppressants and we would be fine
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Reducing inflammation is definitely part of the problem the other part is reactivating what has turned off I agree that immunosuppression alone does not solve it. But at this point what to do? My body is completely devoid of muscles I look like a 12-year-old child I don’t have the strength to do anything and I’m practically a zombie I get to doubt that it’s finasteride I did a myriad of checks but nothing I’m getting weaker and devoid of muscles you can’t find a cause and there’s nothing that makes me feel good it seems that I don’t metabolize anything …
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Well see there was a point at my lowest when I crashed where I was not even able to get my body to respond much ti immune stimulation at all by any means good or bad. Normally my body was hyper reactive to environmental factors but in my PFS/PSSD like presenting condition I crashed with I would at the time go to work even in the cleaning chemical aisle and get almost nothing. My body just wasn’t responding to anything period. I even lost my POIS I had before that which has returned when I recovered. The ironic thing is that many things people use to control that will also crash a lot of us, me included. With my body it’s almost like a see saw of dysfunction. I’m on one end or another, each has different ways to safely control it without falling into the other extreme. A lot of my issues with this sphere of problems in general began at puberty.