i am exactly the same. exactly. its horrendous. im curious tho what specifically taking gabba the second time made worse? when you say blew up? did it make your skin more loose or was it just mental sides that blew up? im willing to sacrifice for my skin but if it fucked with ur skin then forget it
I never knew I had PFS and didn’t know about fin as a poison. So in-between I was still taking it on and off which was catastrophic in that it worsened me 7 years ago I’d stopped it to have my son, 4 years ago I stopped it becat of surgery then 2.5 when I found the cause. Stupidly I was still taking minox up until approx 18 months ago was unaware of its dangers too. Pert of me was in denial I didn’t believe this could be real. Second time it amplified my mental sides the loose skin hit seperatley the ageing, muscle loss etc arrived together. I worry it’s still getting worse and hasn’t plateaud.
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How old are you mate
was gunna ask u the same lol. i just turned 35. my skin turned 92
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That’s tough mate has it plateaud at all. Linked if I have pro gabba foods, collagen drinks my gums react massively in terms of further recession, blood, pain. Suggesting the gabba receptors are effected for those with these particular symptoms finding away to turn them back on or desensitising them seems to be the only way forward. The old adage. In the meantime got to hope it settles or slows. Woke up to another dent in my forehead this morning and feeling particularly weak with severe gum discomfort. I took one half of a st Johns wort cap yesterday to try to lessen the heightened anxiety. There are no free lunches with this monstrous disease.
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Hippydoof does it feel like your lying on concrete in bed and does the pillow feel hard due to the losses in skin texture and subcontaneous fat?
Im really sorry to hear all of that man.
It’s really bewildering that there’s no medical practice that could even mildly benefit us.
Even the most complex diseases have some sort of treatment to mitigate symptoms. With us, it seems we’re given fuck all. I don’t understand how this is possible.
There’s so much science in the medical literature, countless medicines to help modulate nearly every mechanism in the human body.
There must be a way doctors can diagnose what’s happening to us, at least on a symptomatic level, and provide some sort of treatment.
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Even terminal cancer patients are given drugs and support to lessen their suffering. There is nothing for us but denial in what were going through 24/7. It’s inhumane mate
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The less severe cases can wait for a treatment but for some of us this just isn’t an option as we continue to deteriorate and we end up experimenting which is borne out of desperation and is high risk. I guess this is what brings some to the precipice.
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What did your endocrinologist tell you brother?
Isn’t there any detectable markers that are off? This cannot be a completely phantom issue! there must be detectable markers and patterns to this behavior!
Have you speaken to an immunologist or a rheumatologist? Do you have any inflammation or autoimmune markers?
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Good questions inbrugge. After finally coming off fin my test was the only marker that was out. My endo wanted to wait before prescribing t. Over the next 3 months it climbed and returned to normal range. Along that road in the very early days I got wood, hard muscles and drive. As quickly as if appeared it fell away. Nothing returned in that department again. Enter receptor problems. This is where I think other lads actually recover at the 3 month point ie their receptors are temporarily effected. As Ive had rheum arthritis from being a teenager my immune markers have been regularly checked. They spiked all over the place for many years. I now know now they came in check with fin as it lowered t which is an antagonist in rheum symptoms. When taking fin my rheum activity was at its lowest. Having an autoimmune disease muddied the waters as to the cause of my deteriating health. I came off my RA treatment 2 years ago to see if it would positively impact PFS symptoms. Nothing changed no uptick in RA activity either which was down to no test getting through. My immune markers have remained low. I’ve since restarted the RA biological treatment to see if it helps but again nothing has changed. I’d say 5 years ago my PFS would subside slightly when I had my infusion and on that basis I’d say there is a definite autoimmune link. My professor who treats me has been very supportive and stated he feels helpless in what I’m going through. He is aware of Merck and the VIOX shit. As it was prescribed for RA. A lovely guy his only words are " don’t give up you’ve fought RA all of your adult life. Tbh I’m losing the fight my friend.
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It is truly a gruesome condition my friend.
I can only say your existence and fight is an inspiration for me and others on here.
20 years post-fin is a helluva ride. If it helps at all we’re here all in the same boat
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Cheers mate that’s so heartening to read I know there is a few of us fighting to get through each day. Apparently it makes us stronger. If we get out of this nothing would ever pull us down. Major shit for others but a breeze for post PFS people. Each day would be a new beautiful page in life. Maybe this is our test. Who knows 
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When it’s at its worst it’s unbearable which unfortunately is far too frequent ie every other day. But even when it’s bad though its awful I hope that it might start to subside. The love of my sister’s, my seperated wife, my son and the almighty God- not to name him last are what keep me going. Everyone of us wants our old lives back but emerging with some of it intact would be a blessing. It will happen, faith and belief. Science has failed us this far. A bit deep I know
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this is truly a disturbing disease the way it mutates and changed your body and mind. i dont quite think there is anything out there like this. have you seen the movie jacobs ladder? i often feel the same as him. i can not believe these drugs are still on the market i have suffered my whole life for something i took when i was 13. first my mind and now my body. lazarus i have felt what you mean. like even soft surfaces feel hard. maybe it from the numbness and lack of subfat i dont know. my heart goes out to all of you and if i ever won the lottery i would invest to help find a cure for us but there is little to do but try new things and pray it doesnt get worse from it. 99% of things ive tried have blown up in my face. but we are all still here fighting in silence. no one wants to believe. no one wants to hear it. the years of suffering, drs visits, being on suicide watch 3 times, the depression, the toll this has took on my family, the relationships ive lost, being told by 4 drs they can no longer help me, the drugs they prescribed, the side effects ive endured, the food i cant eat, the mutation of my body, the faculties ive lost in my mind and the not being able to put anything /anyone before my sickness or ever live the life i deserve. this all has to lead to something. to me its either fight or suicide. and im telling you brothers you can only fight for so long. may we find some peace one day. i can only pray that the day i can start seeing some progress comes soon. much love to you all on this forum
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Hippydoof I couldn’t have worded it better. Sums up the struggle some of us are going through 24/7: unabated hell. I feel that I’m at the end of the road mate don’t know how I’m still doing it. Try to keep the fight up its all we can do. We’ve been left to rot there won’t be any cavalry coming anytime soon.
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It is truly a gruesome condition my friend.
I can only say your existence and fight is an inspiration for me and others on here.
20 years post-fin is a helluva ride. If it helps at all we’re here all in the same boat
Thanks mate
What symptoms would subside? What infusion was it?
Rituximab or tocilizumab can’t remember tbh. It took the edge of things that’s all I can remember it’s been a while
Interesting. But you haven’t gotten them in 5 years?