symptoms 7 weeks post stopping steroids

[Sueloucam]

Good morning all, I stopped my steroids 7 weeks ago after 4 years, all very slowly. It’s all been good but started to some aches and pains a couple of weeks ago. I am dog walking without any problems, but yesterday when out shopping, I just had to rest, as my hips were aching and I felt fatigued. My recent synactin test was within normal range. I am struggling to be comfortable in bed, my hips particularly ache and my shoulders are very stiff. I have been to the gym with a PT instructor, so all very controlled and I know when I have post gym aches, but this feels different. Immobility increases the aches and pains, but nothing like when I was first diagnosed. I am away from home at the minute, so will have to wait until next Tues to access any steroids, but really do not wish to start them again. I have been trying to ignore them, but having to rest yesterday and not sleeping is getting me worried. Any advice please?

[SnazzyD]

Hmm, a few things to weed out here. I’ll do it in point form while you await the experts.

1. Pred affected muscles don’t just snap back when you have finished. At least they didn’t in my case.

2. Even controlled exercise can be a step too far for your body even if the program looks good on paper. DOMS can strike any time especially if you up the intensity even a little.

3. The location, night time pain and after immobility sounds suspicious though.

4. You have a gut feel this is different.

5. An ok adrenal test doesn’t mean your glands can cope with every demand. Around the house is one thing but an extra squirt because you are out an about may be a step too far. Can vary from one day to the next.

6. Any inflammation buildup may put extra stress on the body too.

7. For at least a year after stopping it is recommended that you keep Pred with you in case of a sudden adrenal drop. It comes out of the blue, I know!

[Sueloucam in reply to SnazzyD]

Very helpful. Thank you. Maybe I have done too much, which just like me😮

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD ’s comments-and would also say if you ignore issues they are likely to get worse…

Maybe try ordinary painkillers for next few days and see if they help -if not then you have the option of trying just a small dose of Pred when you get home. 2mg might be enough to give you the answer -whether you want it or not!

Plus as already said, wise to carry a few Pred on you in the first 6 months at least -for PMR and/or adrenal occurrences.

[Sueloucam in reply to DorsetLady]

Yes, thank you. Good advice.

[HeronNS]

Don't want to alarm you, this is more of a warning and hopefully one that will prove unnecessary, but I found myself in much the same position after my brief flirtation with zero. I believe it was at about the six or seven week mark I gave in and took pred again, albeit at a very low dose. Unfortunately a lot of pain I was attributing to osteoarthritis turned out to be much more likely PMR. When I caught myself thinking about doing some of the things I'd done before diagnosis, e.g. wrapping my neck in a warm scarf even in bed, I thought I'd try a larger dose of pred. I took 10 mg and it was like a miracle! So, major flare about six months after the zero weeks and intervening low dose (which wavered between 2 and 3 and apparently I was never quite right but soldiered on for too long). At this point I'd been on pred about 5 years, and nearly 4 years later still on pred, but only half a mg and the occasional zero day. So far, so good, but definitely in no hurry!

[Sueloucam in reply to HeronNS]

Thank you for your advice. I was so so pleased to be off the steroids and be ‘normal’ I am reluctant to go back onto them. My shoulders and hips are preventing me having a good nights sleep so this is adding to the feeling of ‘unwellness’. I will be home on Tues and re-evaluate the necessity of steroids, and never travel with my steroids. Lessons learnt!

[HeronNS in reply to Sueloucam]

I think a great many of us can relate to how you feel! We're lucky that in most cases the pains which make our lives less pleasant can be alleviated by a small dose of pred. Sometimes I even feel grateful that I have PMR and not something more devastating or harder to treat. Having been miserable with undiagnosed PMR for well over a year before treatment, I have mixed feelings about pred. Perhaps you'd enjoy a little story I wrote several years ago:

healthunlocked.com/pmrgcauk...

[Sueloucam in reply to HeronNS]

A very good analogy 😊

[PMRpro Ambassador]

It isn't uncommon for people to get to 1mg and think they have no problems - the PMR is gone. But in fact the underlying autoimmune disorder is still active at a VERY low level so when you stop pred altogether the inflammation starts to build up - I usually use the dripping tap analogy: it will eventually fill a bucket and overflow however slowly it drips. PMR can be the same, Even 1/2mg can be enough to keep it under wraps - zero pred is just a step too far.

[Sueloucam in reply to PMRpro]

Yes I do think that is what has happened. Thank you.