It seems I do belong here after all, at least for now. MRI showed nothing of note and all tests for RA were negative therefore the most likely diagnosis is still PMR despite my age. I think I'm happy with that option, at least there is a chance I will be rid of it unlike RA or SA.
I start on methotrexate soon. Having weighed it up I feel it's the right decision for me as long as it suits. I'm struggling with the mental health aspects of pred which not everyone gets but I'm struggling at times and i also finf it really hard to taper.
I'm also losing my hair. Now i realise this can also be a side effect of MTX however my rheumatologist is aware and is happy to move onto injectable MTX if an issue or an alternative.
Ultimately my quality of life is not good on pred and whilst it has helped me hugely I need to find another way.
Leeds were keen to refer me back to local services but after I explained I'm concerned they don't have capacity at present and going onto a new drug they were happy for me to stay with them.
All in all a good result and I'm keen to get moving now.
CB
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Coffeebeans
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Me neither but he's open to other options if the hair loss doesnt improve. He agreed it was an intolerable side effect therefore I feel confident things will be ok.
I think it is a good idea to try it - but I absolutely would NOT accept it making me feel worse than I did anyway. And it made ME feel worse than when I had PMR without pred, But loads of people do do well with it.
I am on prednisone and found the tapers horrendous but on Methotrexate I didn't feel any better and my hair, my poor hair... I came off it. 9 mths on and hair still recovering... I wear a wig now which took some getting used to. I am down from 60 mg to 6 mg in 2 yrs 5 mths. A few flares en route. Now doing taper v v slow. Pred rage still hits me but had I stayed on meth not sure if I could have coped with no hair.... I also had bi lateral tedonopathy and planter fasciitis so no walking etc. My opinion for what its worth, I felt yuk on meth. I have GCA.
It's different for everyone. I was 57 when diagnosed. Good luck whichever you choose.
Leflunamide could be another option as MTX is known to cause hair loss problems? I'm with Dr Mackie at Leeds, might be worth your consultant talking to her in a case conference as she really is the expert in all things PMR? I haven't started LEF yet but am due to later in Jan, though might put it off until I'm vaccinated so I'm safer going for all the blood tests etc that I'll need. Your post title made me smile but Ihave to say we are not stuck with you - your contributions on here and to the Yorkshire group are very useful to others
Oh thank you. I would have contributed to the Yorkshire group in December too if I hadn't have logged in a day late 😃
I'm with Dr Miles at the mo as a second opinion and I'm really not sure how to drop it in conversation yet that I'm aware of Dr Mackie although I could talk about the physio/exercise in PMR today as a starter.
I'll watch your journey closely with Lefluamide. Best of luck with it when you start and I hope it makes a real difference. I'm also hoping vaccination is soon because I would rather be vaccinated on pred only and not MTX too.
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Chronic stress and tapering, stuck and scared to taper
Stuck on15mg for another six weeks
Pain, stiffness, it's all coming back to me now!
Seem to be stuck at 7.5mg
