“I suddenly thought I’d aged”

[Soraya_PMR]

eprints.whiterose.ac.uk/852...

As per request, sharing again for those who haven’t read this, by Dr Helen Twohig et al.

[Mai45]

Thanks Soraya. I must have missed this the first time round. Really interesting.

[IdasMum]

Thank you.

[Sportsgirl]

After reading the article, taking prednisone really scares me.

[Constance13 in reply to Sportsgirl]

If you don't take it you'll REALLY get scarey!!

[Soraya_PMR in reply to Sportsgirl]

Do you have PMR or GCA Sportsgirl? Are you already on pred?

[Sportsgirl in reply to Soraya_PMR]

Still working it out with doctor. No symptoms of GCA. So far NSAID and acetaminophen minimizes concerns. From what I am reading, I surely don’t have it as badly as others. Major concerns are rolling over in bed and weak upper arms and hands.

[Louisa1840]

It made me cry because I am relating, just now, to everything that's being said. I have had PMR for 2 years and have been unable to taper below 10 mgs daily (I'm am incredibly optimistic person and I thought I'd knock it off in 18 months!!!) but just lately, it's got so the Pred doesn't seem to work anymore. I am, reluctantly, going to see my GP this week and agree to methotrexate which she wanted to start me on last time she saw me. I don't want any more toxic drugs but I'm desperate. I am so stiff I can barely crawl around!

Feeling sorry for myself (which is NOT like ME!!)

[Soraya_PMR in reply to Louisa1840]

It’s ok to feel sorry for yourself, we’ve all had those spells when we can’t fight our way out of a paper bag, nothing seems to go right (as per our expectations) and PMR seems to be winning.

I told you before that I got stuck at 8mg, ooh my rheumi frowned hard! But eventually I unstuck myself, sailed through 7 & 6, Couldn’t do that 6-5 drop at all, so via 5.5 now trying 5. [saw a different GP re my ‘lady bits’ who in passing asked what dose pred I was on, said “that’s an odd dose” when I told her 5.5 and said she doesn’t get involved in it! That simple statement from her, in a non dismissive ‘do what works for you’ way, relieved the pressure and confirmed for me that any reduction was success, no matter how small]

Did you try altering your pred dose time? Or consider splitting it? That really might be your way forward, simple as it sounds it can be really effective.

[Louisa1840 in reply to Soraya_PMR]

Yes, always split my dose and tried going back up to 15 mg which seemed so counter productive after 2 years. Too much pain and stiffness. Feel like I'm back at the start. BUT - thanks so much for your support. Means a lot ....

[linda49]

A very interesting paper. Many thanks for the link. I wonder if there has been any further work on the PROM mentioned in the article as this was 5 years ago?

[Jackoh]

Thanks Soraya x

[BonnyQuine]

Thanks for this, Soraya. Mine is GCA, but there seems to be a fair bit of overlap. I certainly felt that I'd aged rapidly. Early days - couldn't get up off the floor, + great difficulty getting up the stairs, and became v weak and clumsy. Have always assumed that most of that was side effects of pred but, reading this, I wonder . . . W pred all pain vanished overnight, but . . . Fatigue was a major symptom before pred, and just got worse w pred, but all the other stuff, notably severe muscle weakness, didn't kick in until I started pred. Will always wonder . . .

[Soraya_PMR in reply to BonnyQuine]

I became clumsy too. My personal theory is that my brain had certain expectations of my muscles, but they weren’t able to perform at their normal level.