4months since I took my last steroid tablet

[JulieR2]

Hi everyone

I am just back from a relaxing holiday and thought I would offer an update and ask for advice. 😀My other health issues are still under investigation but the consultant believes risk of ovarian cancer is small!

It’s four months since I took a steroid apart from injections in my hip and shoulder for bursitis. I know we all think at the start that once off steroids we will be the old us again, but I can say be prepared for rehabilitation post steriods.

In the last 2weeks I have developed a tension in my shoulders which feels like the type of feeling when you may be very stressed. By bedtime I am finding I am quite limited in mobility and it’s hard to turn over in bed. Like the symptoms in my hips when PMR started.

However unlike the original pattern, I am better in the mornings. I have thought that maybe I am getting a flare but a good night sleep improves things.

Has anyone else experienced something similar. I have guessed that getting tired reminds me that I still have PMR and am just off steriods. Is this just the next phase of recovery whereby rest and pacing is very bit as important.

[DorsetLady PMRGCAuk volunteer]

Hi Julie

It can take anything up to a year to “return to normal” after coming off the steroids, so you can expect to feel below par for some time, especially if you have other health issues which may have been masked whilst you were on Pred.

However, in your case just be aware that you may still have some PMR lurking. Looking at previous posts it seems it started in autumn 2016 - and if that is correct then it may not have gone into remission completely.

Don’t be paranoid about things, but on the other hand don’t totally ignore any “PMR like” symptoms - nip them in the bud if you’re not sure.

Hope it’s not a return, please keep us informed.

[JulieR2 in reply to DorsetLady]

Thanks so much. It is around three years ago that the symptoms started. Will keep you updated. 😀

[SheffieldJane]

This is useful advice. I think that I will need a long period of rehabilitation too. PMR has weakened me and allowed Osteoarthritis to flourish. I imagine this phase needs courage and a lot of common sense.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

I’m not sure the PMR allows the OA to flourish - but the Pred certainly does mask the increase in pain and the degeneration of the joints - something that would happen anyway, but if you weren’t on the Pred you would be aware of.

However the weakness of the muscles certainly does put more pressure on the affected joints - especially hips and knees.

[SheffieldJane in reply to DorsetLady]

That’s what I meant really. I have been much more sedentary. I used to race up and down flights of stairs in the Law Courts where I worked for 6 years preceding PMR. Unthinkable now.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Yes, you’re right in that aspect. I felt my legs were getting very weak, that’s why I started Pilates as much as anything. My GP suggested more walking to help my arthritic knee, but that was a definite no-no at the time!

[jinasc in reply to DorsetLady]

Just tot add, a group member started a gentle walking class................after she had tried the free offer by Age UK for people to come to session and try out Nordic Walking Poles they helped enormously. They met on a Friday, planned a shortish walk and made sure there was a cafe at the end of that walk. It encouraged others and if anyone needed to rest.. that was fine.

[PMRpro Ambassador]

It could be just myofascial pan syndrome - back muscles are tensed/spasmed and lead to such symptoms too. It can be part of PMR but can also appear all on its own. I found Bowen therapy and therapeutic massage both very helpful,

But just because it is different don't reject the possibility it might be PMR wriggling out of the undergrowth . It is a common time for it to resurface and everyone I know who has had it more than once says every episode is different. You had steroid shots for your hips - their effect may still be hanging on.

[JulieR2 in reply to PMRpro]

Thanks so much very helpful.

[HeronNS]

I'm at a very low dose now and I take the evidence that I'm still improving to be the fact that I wake up feeling better than I did the night before, despite many hours longer since pred was taken. I, too, would suspect in your case it's not so much PMR as one of the other things mentioned, like tense muscles or lack of condition, things which can be managed in ways other than using medication. If the symptoms start to build up and you are indeed suffering from "morning stiffness" then that may be the time to reconsider PMR. But chances are a few sessions with a physiotherapist and some exercise which helps to keep muscles in condition will be what's called for at this time. Best wishes - hope your other health issues also turn out to be easily resolved.

[JulieR2 in reply to HeronNS]

Thanks I will keep you updated.

[piglette]

I have just had a blood test for ovarian cancer a CA125 and I assumed that tells the doctor whether to carry on checking or not?? Is this correct??

[PMRpro Ambassador in reply to piglette]

It isn't the only thing that raises a Ca125 but it is raised in ovarian ca. Daughter just had it checked and it was mega high which was a tad scary for 2 weeks - but the MRI showed it was endometriosis on the first day of her cycle. Though I imagine that is something that won't apply for you!

[piglette in reply to PMRpro]

Why do you think I am over 21?

[PMRpro Ambassador in reply to piglette]

You have PMR???????????????????

[piglette in reply to PMRpro]

Atypical!!

[PMRpro Ambassador in reply to piglette]

True!!

[JulieR2 in reply to piglette]

Hiya yes I had this too mine was low but you can have a false low and a false high. I have to have another scan in 6 weeks and then review. I also have to have a hystoscopy. Not because there’s a problem but again it’s a double check. I have to say my consultant is being very thorough and following the Royal society of obstetricians and gynaecologists guidelines. I think better to be safe as ovarian cancer can be symptomless. Hope everything goes well for you too. 😀