PMR under control?

[krillemy]

I generally struggle to understand when "PMR is under control" or "in remission." It must have to do with what expectations one have to life and then age, activity level, obligations to family and children, and, not to forget, work—if you work and what kind of work it is, right?

What do you all do? Do you just increase the prednisone until you're pain-free and able to do everything, or are you, like me, compromising? Accepting much less activity and some pain and stiffness to keep prednisone doses lower?

I am only 57 and have already been taking it for five years. I cannot get below 11.25 mg, and that is not enough, but taking more means weight gain and mood swings, higher LDL which can’t be a long-term solution if this terrible disease never goes away… I just had my first X-ray of my hands, feet, and pelvis to check for any other diseases that might explain some symptoms, but fortunately, everything is fine, no strutual damage to joints, so the PMR diagnosis cannot be disputed, even though I am CRP-negative.

Sorry for the outburst, but I am genuinely curious to hear from long-time sufferers on the topic of prednisone vs. activity 🙂

[DorsetLady PMRGCAuk volunteer]

Sorry but there is no simple answer to your question.Although most people with PMR will have similar symptoms/issues/reactions not every is a text book case. In fact not sure there is such a thing.

We always say your PMR is just that -yours. Not exactly the same anyone else's -what makes it so frustrating.

But, sorry to say, those who get it at an early age do seem to struggle with it more..

Under control -no or very little pain or symptoms affecting daily life..

In remission - no symptoms after having been off Pred for a number of months

[krillemy in reply to DorsetLady]

Thanks - I know there is no text book answer, I realley just reach out to see how others tackle it

[piglette]

You won’t know your PMR is in remission until you are on zero pred. Occasionally PMR can come back even when you have been in remission for a while.

[suzy1959]

I have had my PMR for 13 years now, starting when I was 52. During that time and until 2024, could not get below 11mgs. I am now on 6.5 and still reducing. Don’t know how far I will get but the message is to give you some hope!

In the meantime I have developed Osteoarthritis with 4 joint replacements, OA in my foot and back too. My activities are severely curtailed but more likely from the OA. Of course I have aged too!

[krillemy in reply to suzy1959]

Thanks a lot, that really helps! I was 51. It sounds so good that you can dome down now. I am happy for you. Funny that we are/where stouck at the same dose. Where you pain free with little impact on daily life when on the 11 mg?

[suzy1959 in reply to krillemy]

I think so until the OA came along which was quite early on too. I have never been without pain all these years but now it does not feel like PMR pain anymore. The PMR may even have gone! 🙏🙏

[byebyebicycle]

Krillemy, I really sympathise, I've been through the puzzle for last year ever since I first took Pred and the pain vanished in days and expecting the deep ache and stiffness to gradually decrease. Didn't happen and I've lived with a level of discomfort which is unpleasant but also recognising the need to decrease the Pred have no alternative but to carry on. Originally at 15mg Pred I recently tried to get to 8.5mg from 9 by the DL Slow taper and failed, a lot of stiffness and pain returned. Used the flare protocol to steady the ship and now going again from 10mg to 9.5mg with the slow taper but I'm going to reduce my swimming and walking appreciable. I come to the conclusion that I must limit my bodies need for the hormones coming from the adrenal glands which means for me in less physical activity. I'm still walk everyday but half the distance and I swim 3 days a week same there do 50% less laps. Good luck to us both and everyone else 🙂

[GucciPaddy]

Hi krillemy,

I'm off Prednisone for almost a year now and am doing ok! I persevered while reducing the dosage over the year. It seems to have worked (for me anyway). Beyond that I have no other knowledge!!! I wish you luck.

Paddy

[SpaghettiWestern99]

  krillemy - I get your questions. Diagnosed @ 52, I used to be able to run marathons.

PMR has changed my outlook. As much as I want my old life back and be able to do all those things, if I’m honest I just can’t do it today.

I don’t know if my body will play ball with my desires but I’m dammed sure PMR won’t beat me mentally 🙂

If I feel strong enough I’ll reduce the Pred, if I need to I’ll increase it. In essence I self regulate with the hope that one day I don’t need it at all. That day feels like a lottery

[krillemy in reply to SpaghettiWestern99]

do you up pred. in days where you know there will be a need?

[SpaghettiWestern99 in reply to krillemy]

I’m measured. If I drop I’ll try that dose for a few weeks. If my body is saying no, then I’ll go back to the last known good dose.

It’s not daily, more of a progression. The negative signs manifest with nausea, fatigue and discombobulation.

I still work full time - sometimes I’m not sure how.

I’m comfortable that I might be on Pred for ever. What I don’t know is which dose 🙃

Under control still feels abstract 🙂