A positive move

[Nanatoo]

I saw a rheumatologist yesterday and thanks to all the information gained from this site I am now taking prednisolone. I wanted a two week trial and he wanted a blood test showing positive markers first but I pointed out that many people don’t have that. He mentioned RA but I showed him that none of my joints are swollen, then lymphoma so I asked him to check my lymph nodes. All good. Then a got a little tearful as I was in so much pain and he agreed to a two week trial at 15mg. If I am 90% better by Monday he will refer me back to the GP for future prescriptions and follow ups and if not he will book a scan. I have friends who have had pmr for many years and thought 15mg was a little low to start so I took 20mg this morning. I just want to say all the knowledge I gained from this site gave me the confidence to stick to what I wanted so…. Thank you

[Mayadill]

A result! Fingers crossed it all goes smoothly now..

[PMRpro Ambassador]

15mg produced a miracle in 6 hours for me - so it CAN be enough but all too often isn't and particularly GPs often seem unaware that some people do need a bit more.

Fingers crossed!!!!

[Nanatoo in reply to PMRpro]

I regret not seeking help earlier as my first signs were at Christmas but I’m of the generation that thought our bodies would heal themselves given enough time. Not so when you get older!!

[SheffieldJane]

Wow! A seminar, well done. I hope they took it with good grace. The good ones do.

[Nanatoo in reply to SheffieldJane]

He actually did, in fact he seemed quite happy that we had found a compromise. I did apologise to him and say that I was not doubting his competence but I was just sick of feeling stiff and in pain all the time

[piglette]

Well done for sticking to your guns. There are so many people who have not got any knowledge of PMR so go through a lot of unnecessary pain waiting for doctors to make up their minds. I was one!

[Charlie1boy]

Well done. A good result.

Now, don’t get bullied into tapering down too quickly!

Patience is the name of the game, and loads of information for you on this Forum.

Good luck

[GrandmaPirate]

My rheumy decided to let me start at 20mg prednisolone/day. You should experience a big improvement within a few days. If there is no improvement it is not sure you have PMR. If you feel like reborn you should stay on this dosage for a few weeks and then you should start to diminish the dosage slowly. This is really slowly to prevent a flare. It took me 2 years to end up at 1 mg/day and my rheumy keeps me at that low dose. I feel great and walk about 10 km each day , do pilates 50 minutes each day except Sunday and love to ride my bicycle. I wish you good luck!

[Nanatoo in reply to GrandmaPirate]

thank you so much for your reply. It gives me great encouragement as I just want to get back to enjoying being active

[PMRpro Ambassador in reply to Nanatoo]

I'm sure you do - but even on pred that isn't a guaranteed result. You have to do your part in managing the illness and while some people are able to go back to their previous active lifestyles, many, probably the majority, have to manage their activity levels or they meet the wall of fatigue that is so common with autoimmune disorders. The pred manages the inflammation but does not touch the disease activity itself, that chugs along in the background, making you feel as if you have constant long term flu. You aren't cured and as time goes on you may well lose condition - you have to be careful because overdoing things too much can set you back a lot.

healthunlocked.com/pmrgcauk......

Read the links in this post - especially the Spoons theory. They all have a serious message.

[Mayadill in reply to PMRpro]

I have limited energy, as in normal energy levels for a much smaller part of the day. I want to differentiate that from chronic tiredness. As I have recently smirked about, it means I can move a bookcase if I have to! As I said, only one out of the ordinary thing a day. With in the case of something like that a day off in between: it took in fact about 30 hours to feel perfectly back to normal. I have had the occasional bout of inertia as in oh look there is a tissue on the floor, the notion of picking it up being absent, which is different again. I do not remotely feel as if I have long term flu. i am sometimes just a tad suspicious of chronic tiredness. If people have refused to just stop, rest, recover, accept they are ill, it seems to me they are going to feel permanently over-tired.

[PMRpro Ambassador in reply to Mayadill]

Quite

[Mayadill in reply to PMRpro]

The answer to exhaustion is not to make oneself more exhausted.

Twice now I have regenerated slowly from disease, once after pneumonia, once after diagnosis of PMR, from doing virtually nothing to a tiny bit of something to a bit more. The energy comes back and finds its own level. Six months after having been on an iv drip in the Brompton I could walk across London from NW3 to SW14. I do not think I should have achieved anything useful by doing that, even though I probably could have, a moment before I felt ready to, wanted to. Or indeed after the spinal surgery and six months flat in hospital in plaster (but we all had arms like wrestlers because we had trolleys to lie on our fronts on and wheel ourselves about), after which I had to remember how to walk, after which I was a further six months in an orthopaedic brace about in the world, going to school and so on. That came off at the start of the summer hols and by the end I was walking miles. The best gift you can give a physically traumatized body is time to heal.

[PMRpro Ambassador in reply to Mayadill]

Quite - but for some it seems the hardest thing to learn.

[Nanatoo in reply to PMRpro]

I’m looking forward to doing Pilates again. It’s a good way to stretch out stiff muscles without overdoing things. I had to stop as the last time I went I couldn’t pull myself up after the floor exercises so lay there like a dying bug until I got help. And a walk round the park while we still have summer is another aim

[PMRpro Ambassador in reply to Nanatoo]

It was Pilates that helped keep me mobile during the 5 years I had PMR without pred. Only possible after an aquafit class first! I had a terrific teacher though - all nicely adapted.

[Mayadill in reply to PMRpro]

It seems to be tied in with people's wider attitudes, to life, to their bodies, to illness. There have been four major and unconnected episodes of ill health in my life. Three of them (scoliosis, PMR and cyst on my kidney) were of unknown cause. Two of them were when I was under 13, a fine well nourished and well exercised young person. Things go wrong, however young or old or fit or well you are. Anyone who doubts that might do well to visit a paediatric hospital.

[Daffodilia]

I started on 40 mg of pred with almost immediate relief from pain and stiffness. Cut down some activities but still nordic walk and do pilates. Now on 6 mg after about 5 yrs and finding it hard to reduce but try a couple of times a year - Spring and Autumn. Had porridge for breakfast every day to reduce nausea after taking pred. Take Alendronic Acid and Adcal to prevent osteoporosis - age 70. Good Luck.

[Darkchocolate1]

My GP started me at 20 mg prednisone for 1 month then to 15mg. My pain was gone in 24 hours and did not return at 15mg. I hope all goes well for you.