Should PMR symptoms clear up rapidly with prednisilone?

[humlies]

I was diagnosed with PMR 6 weeks ago, and am now on 12 1/2 mg prednisilone, having started on 15mg. My symptoms are sometimes worse than before the medication, and affect arms and particularly legs as well. One of the leaflets my doctor sent says that if symptoms do not clear up within a week of taking steroids it is probably not PMR. My only contact is phone calls with a doctor; should I ask to see a rheumatologist?

[SheffieldJane]

I needed 20 mgs to start with. Sometimes if you have gone undiagnosed for some time there is a build up of painful inflammation. This is just another option to explore. Reducing whilst still so symptomatic will make things worse.

[SnazzyD]

Hello. By symptoms do you mean pain? Did the Pred work at all?

Just a note, 15mg is not always enough for everyone and doses up to 25mg are needed for some. Also, it can also take more than a week for the full effect. The doc may have been misleading with the words, “clear up”. Pred doesn’t get rid of PMR, it just stops the damaging inflammation. The autoimmune disease will rumble on for quite a while and burn out in its own time.

[piglette]

I agree if the steroids do not work it probably is not PMR, but at least give you a higher dose to make sure and don’t reduce it in that time.

[PMRpro Ambassador]

Some people need more than 15mg and longer than a few days. The most recent guidelines say "The lowest effective dose in the range 12.5 to 25mg" - given that even 1mg can be the difference between the dose working and not, your GP should have tried more if you weren't at least 70% improved on 15mg.

rheumatology.org/Portals/0/...

As to the pain being worse than pre-pred - have you also adjusted your lifestyle? Being on pred only reduces the inflammation and so the symptoms to allow a better quality of life in the meantime - it isn't a get out of jail free card to go back to your normal activities, you have to manage activty too. I can't carry a heavy shopping bag without my arm muscles reminding me next day and I am limited to the distance I can walk. Lots of things have had to be retired because they are too hard on my muscles. You may get back to a more usual activity level for you later but first you have to find out about your PMR and how you react to pred. Then you start "training" - from a very low beginners level for any activity and build it up VERY slowly, I mean like 10 mins walk to start, 5 mins out, 5 mins back and adding 1 ming every few days IF the rest day between was OK. Rest is very important in the context of activity in PMR. This is a new normal.

[Theziggy]

20 mg gave me relief

[john_mcdonald]

No. I started on 40mg per day and the condition last 4 years before I was able to come off prednisolone completely. What your doctor says appears to be wrong. I've been succesfully treated by 2 different and very competent NHS doctors. I wouldn't bother wasting your time with any person other than your GP.

[paulst955]

I started on 20mg and it took 2 weeks for complete relief, still on pred 8 years later had my worse flare 3months ago. Don't give up you probably need more pred.

[-LJ-]

I started on 15 and after a couple of weeks called my rheumi and asked if I could try 20 as my symptoms weren’t reducing like I read they might. Sure enough, the 20 was so much better...if I remember correctly, I stayed there for about a month. Don’t ever reduce until you are comfortable with your pain (or lack of it!). Sometimes I could taper in 2 weeks, many times I stayed at a level for a month. It is not a race, it’s all about how you feel. Also, never taper more than 10%. It will cause you to flare and have to start over. I was lucky to never have a flare and be off completely in two years. But if my pain was there....I would have stayed on prednisone however long I needed! Slow down, rest, rest, rest! It’s a journey, but hopefully manageable! Stay on this forum, it will be your Bible....far better than most Doctors imho! You’ll find answers to most all PMR issues right here! Tons of fabulous advice. I actually only saw a Rheumi when diagnosed, then 2 more times in 2 years, with a few online orders for prednisone & random questions etc. Good luck!🍀

[Loyd]

I had to go up to 30mg to bring a flair under control after reducing too fast from initial dose of 15mg - which did work miraculously at the time. Try 25mg for a few days and see if that clears it away. Good luck.

[Meggsy]

15mg wasn’t enough initially for me, 25mg did the trick. Presently on 3mg after 2.5 years. Don’t rush the taper, the tortoise won the race. 🌻

[humlies in reply to Meggsy]

You are all so helpful: I feel encouraged if also confused, but it seems clear that every one of us reacts differently to PMR. Is there anyone whose doctor is willing to let them monitor for themselves the increase or reduction of prednisilone?

[PMRpro Ambassador in reply to humlies]

Lots of us - bit you have to get to know your own PMR, your own body and how it all works for you. Then you have to get the doctor onside.