After a lengthy chat with my rheumatologist he’s thinking of prescribing me a jak inhibitor. I’m chasing an immune drug in the hope it brings Pfs to a manageable level. I’ve performed a search and info is limited. Any views would be welcome
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Can you be plz more precise?.What is the name of medication your doctor is proposing?
Away from it being very expensive (I have no idea how he would convince your insurance to pay for it)…Have you ever tried plain old prednislone (if you want to go and test the inflammation theory)…If you want my opinion, i wouldnt even touch JAK inhibitors before going at least on prednislone for 5 days high dose…Just my humble opinion.
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Ia was on pred a number of years ago my proff shook his head when I suggested it again. This is what he’s recommending for my immune system. I’m preying it helps some of my Pfs as my state is so bad. Had the worst day. Desperation drives me now unfortunately
There is pain from all sites of your Body. It’s unbelivible! But you do one right thing, before your head exploding you write down your thoughts, you write down your pain here. I cant give you an advise for this medication but I and many Others read all your Posts and you have many friends here.
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I cant understand why he is suggesting it to be honest…
I mean, at the End no one can know, i guess barely any pfs patients if at all has tried such immune modulating drug, but i struggle to undestand the causality, how he thinks it might, without proving at least that predinislone which is a potent immune suppressor would make your symptoms better.
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Today, I can hardly see out of one eye, I’m freezing, I’m regurgitating food, acid on a grand scale, my throat is sore, raging tinnitus, blocked nose, burning scalp, bleeding gums, teeth pain, blinding headache, bone pain everywhere, very weak, stomach pains, diarrhea, extreme anxiety, suicidal, anhedonia, gripped by fear for no reason, fatigue, exhaustion, pain in my cranial plates and eye sockets!!! Then there’s the general decline continuing to lose weight, muscle, brain function, my looks, strength, always feeling alone even when with my son/people I can’t remember the last time I felt anything positive, smiled, laughed, felt a hug, joy it’s emotional pain around the clock.!!. This is extreme open ended suffering there’s no where to go for refuge. On top of it all I’m denied wherever I go for help, no matter what I say or take as proof . It’s just too much.
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Be very strong Sir, i already know u are but that’s the only option for us unfortunate bunch of severe sufferers. Why don’t u convince ur doc for prednisone or dexamethasone ! Don’t know anything about JAK inhibitors though. This seems to be a very novel treatment.
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@anon74895881 thanks for this and the kind words, he won’t go near the pred or methpred it really feels like my goose is cooked this time it’s beyond it really is.
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Please keep us updated on your experience with JAKs one way or another, Godspeed!
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hope u will find some recovery somehow someway for your situation.
Keep us updated on the JAK inhibitor, i am very curious about this.
They seem to be pretty dangerous though, long time use can cause some cancers and/or infections.
goodluck bro.
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I wish you the best!
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Please let us know how it works!!
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Good luck man, keep us updated.
Stop relying on doctors, esp the nhs… ha.
I’m in the U.S. and they suck here too
I was reading on the medication your Doctor was suggesting and it seems that it does cross the blood brain barrier, which is why i deleted a former post advising you against it. At this point i cant advise you anything, other than to follow your heart…Natural recovery doesnt exist in my opinion (Its so rare that we can safely assume, it wont happen to 99.99% of us), so experimenting, donating, raising awareness are the only things we have. I expiremented with way more dangerous things than an approved drug, goddamit what has this drug done to us. Sigh…
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@silentpain89 I agree, Im in such a desperate state which is why I’m doing this. One day I hope this gets out and some of the cu**** that brought this to market are held to account, how many lives have been destroyed in such a torturous/inhumane way.
Any update man
@Bigpoppa10040 I haven’t heard back from my consultant. I expect it’s because hes decided against prescribing me the jak inhibitor. I have a dexa scan in the coming weeks if I haven’t heard from him by then I’ll chase up for a decision.