In need of some advice please
Posted , 10 users are following.
PMR diagnosed over two years ago . Initially able to reduce regularly but never below 8mg and so the up/down began . Moved house and GP , referred to consultant at Derby Royal. PMR Diagnosis comfirmed so handed back to new GP. Started regular blood tests and supposed to reduce by 1mg about every six weeks if blood tests OK. Have tried despite some pain in my neck , arms , shoulders and hips which two separate GPS at the new practice dismissed as arthritis' at my age' . Got down to 6mg but last couple of days pain in arms and shoulders real problem . Had I presume annual check up appointment with consultant who said up the steroids and consider taking methotrexate. I cant remember at what dose the pain returned so i took 8 mg today . Dont feel any better . Should I persevere at 8 for awhile or up the dose further and what about the methotrexate. I'd appreciate some advice please if anyone can make sense of my ramblings !
JOAN
0 likes, 22 replies
peggy_56092 joan83529
Posted
I would go up to ten and then ease back to 7 within a few days. I reduced by 1/2 mg after reaching 10 mgs. You want to get all the inflammation, avoid yoyoing up and down. Reduce back to what felt best last such as 7 or 8?
diana21296 peggy_56092
Posted
I have always reduced by half mg every 4/6 weeks but have stayed on 5.5mg for a few months. No pain and bloods normal. Take it very slowly when reducing. Methotrexate not for me as I looked up the side affects and ran a mile.
diana21296 peggy_56092
Posted
Sorry, my reply was for Joan.
Twopies peggy_56092
Posted
how do you ease back? specifically, how long did you stay at 10 and then how did you get back down after popping up?
also, you reduced by 1/2 mg using the dsns method? thank you.
peggy_56092 Twopies
Posted
Stay at 10 mgs for a couple of days, reduce 1/2 (or 1) every other day; stop where it feels best and stay there for a at least a month if not more. Remember, PMR stays around for 5.9 years for many (almost half) and 10 years at a low dose for most of the other half. You want to be as pain free as possible during that time.During a light flare upping the dose 2 - 5 mgs usually works. During a prolonged flare (that I didn't recognize) when on 7 mgs, I had to take 15 mgs and then took about a week to go back where I stopped at 8 for a while to make sure the inflammation was gone.
Vicki200252 Twopies
Posted
Everyone is different, not one person is the same .
always consult your doctor for prescription information.
when I was on 10 , my doctor suggested to drop back by 1 mg every 2 weeks. Once I got to 4mg my pain started again and I have been on 5mg every since (1.5 years). I keep trying to come down but each time I have to start again at 8.
I am on other meds as well because now I have been diagnosed with RHEUMATOID arthritis.
when you read all of your posts you will see how different we all are.
BettyE joan83529
Posted
As someone who has had arthritis for decades and had PMR for eight years in all I'd like to run a masterclass for all the doctors we hear about who dismiss PMR as "just" arthritis. Also it does seem a bit arrogant for a doctor to be so dismissive when you already have a PMR diagnosis.
My GP who was great did say to me when my pain came back that I could try leaving my Pred. dose where it was and take some paracetamol for a week and if thee pain went we would know it wasn't PMR. The pain persisted and so my Pred. dose was increased.
It was a disaster because it turned out that my liver is unable to tolerate paracetamol but that's another story.
EileenH joan83529
Posted
You might need a few days at a higher dose first - top experts suggest adding 5mg to the dose where the flare occurred for up to a week or 10 days - you can then drop straight back to the lower dose you want to try, no need to taper.
Like Betty - I'd love to have a few classes for these doctors who can't recognise a horse when it comes into sight! For most people a trial of paracetamol will sort out other pains from PMR without too much risk. But whatever any GP tries to tell anyone, paracetamol is NOT an ideal painkiller for long term use.
diana21296 EileenH
Posted
When I had bad bursitis 10 years ago rheuimie said to take paracetamol and one could take 8 a day for 40 years with no ill effects!! Heat and rest and NHS acupuncture sorted it out.
GP told me to take paracetamol for 4 weeks even tho I said I thought I had pmr. So went to A&E for satisfactory diagnose. Just goes to show. Incredible.
BettyE diana21296
Posted
Six days of 8 a day Paracetamol got me a very fast referral to a liver clinic! God save us from people who think we all fit the same pattern.
One of my first lectures at teacher training college was on individual differences. Maybe Med. School could think about including it.
EileenH diana21296
Posted
He'd tried it had he? The difference between therapeutic and pathological dose with paracetamol is a very narrow line - and a bit of alcohol with it could easily tip you over it. I watched a woman die in ICU years ago, had had a row with her bloke at New Year and took a load of paracetamol and sleeping tablets after a skinful - nothing they could do. She woke up but then watched herself get yellower and yellower. By then she'd realised she didn't want to die after all. No going back - no liver transplants then.
ptolemy EileenH
Posted
They say paracetamol overdose is a horrible death.
EileenH ptolemy
Posted
She was conscious - and it was.
ptolemy EileenH
Posted
How sad. If you decide to kill yourself don't use paracetamol.
EileenH ptolemy
Posted
She had taken enough of everything to theoretically kill herself without waking to see the result - none of the doctors could understand how she had regained consciousness at all.
ptolemy EileenH
Posted
Perhaps her body wanted to live, but she didn't. She must have been quite tough, at least her body must have been.
EileenH ptolemy
Posted
Young and fit beforehand we assumed ...
ptolemy EileenH
Posted
Really awful.