Why are my limbs painful after coming off Pred?

[Margot27]

I have been on pred since 2018, and finally managed to come off it about 5 weeks ago, after reading all the advice and comments in this forum - I'd never have managed it without, it has been a lifeline for me over the past six years. But Dead Slow Nearly Stopfinally has worked for me, so I feel very lucky.

I am having a short synacthen test tomorrow but I'm going on a walking holiday in Spain a week today and am slightly nervous because I'm getting quite a lot of stiffness in my arms and legs. After I've had the test tomorrow, I'm not sure how quickly the test results will come through or if my rheumy will give me advice straight away., so I wondered would it be ok to take say 1mg of prednisolone a day, just to help me through the holiday? I can manage without but it might help me along! But I'm worried about possible side effects of taking pred. in that way. I'd really appreciate any advice or comments.

[PMRpro Ambassador]

We do warn that getting off pred doesn't mean that the underlying cause of the PMR symptoms is entirely burnt out. Even 1/2mg of pred can be enough to keep the inflammation due to a very low level of disease activity under control - but zero pred turns out not to work. A month or two can be long enough for stiffness and symptoms to reappear - sometimes it takes longer and it can be up to 6 months before reality hits.

I really would accept that your journey with pred is maybe not quite over and go back to 1mg at least for the duration of the holiday and worry about whether that is the case afterwards. If it had been me, I would have stayed at 1/2mg until after the holiday just in case. And then you need a VERY slow taper for that last bit, over 3 or 4 months.

[Margot27 in reply to PMRpro]

Thanks very much for this. I think I probably knew in my heart that I needed to continue a bit longer on pred but was trying to avoid that. I'll do as you suggest and go back to 1mg for the next couple of weeks, and then as you say can work out what to do afterwards - and I'll have the result of the short synacthen test by then too, hopefully.

[PMRpro Ambassador in reply to Margot27]

Think that is a really good idea and 1mg is such a low dose it is doing no harm. Make sure you enjoy the holiday.

[Margot27 in reply to PMRpro]

Thank you so much - and for all the help you provide to all of us with PMR, it is truly invaluable.

[PMRpro Ambassador in reply to Margot27]

Gets me out of bed in the morning

[HeronNS in reply to Margot27]

I started pred in 2015. In 2020 I tapered to zero, having tapered from 2 mg slowly over an entire year. Within six weeks back on pred, and a few months later had a major flare. Over the past couple of years steadily tapered, always going by how I felt. Especially in the last few months I went by how I felt in the morning before taking pred. My "new" final dose was zero, which I gradually increased over some time. Final pred dose was February 1st, and had planned to take 1/2 mg again a week later - but forgot! Which I took as pretty good evidence that I didn't need it. Throughout those last few months if there were any PMR-like twinges I took that as a signal that I could not take a lower dose that day. Not sure how long all this took, but ultimately it appears to have been successful, although I'm still holding my breath somewhat. Baby steps. So, take your time. 🍀

[Margot27 in reply to HeronNS]

Thank you. I too have gone really really slowly with the tapering, having tried several times but never got past 3mg in the past. So I went really slowly this time and just as you say, it all seemed fine - I didn't feel any 'PMR' type pains so I thought all was OK. And actually I don't think I'd be worrying about it except that I'm going on holiday with my two sisters and I wouldn't want to spoil it for them by not being able to walk as much. So I'll go armed with a daily low dose of pred and I'll be skipping up those hills! Thank you.

[HeronNS in reply to Margot27]

Have a great time. Before I got to the end of your post I was thinking - take pred with you!

[Margot27 in reply to HeronNS]

Thank you!

[PMRCanada]

Have you tried taking Tylenol/Paracetamol for the stiffness in your arms and legs? If it doesn’t help there is a chance your PMR is returning/continuing (not what you want to hear, I know). When did you notice the return of your symptoms? Not sure if your CRP/ESR have been tested recently, and if they are elevated? Remember you have aged 6 years since starting pred, so that is a factor to consider as well. Would a chat with your doctor help you figure out your next steps?

Taking 1mg pred may provide you a more comfortable/enjoyable walking vacation by addressing your symptoms, however if you do start taking it again before exploring other possible causes of your symptoms, you will not have ruled out anything. Depending how long you take the pred you may have to taper off that last mg again and I’m not sure how difficult that was for you. 1mg is a low dose though so not much worry about side effects and it may be enough to address the inflammation in the long run.

It is such an investigative process to figure out the cause and best treatment accordingly. Sometimes it’s just trial and error. I do hope it’s not the return (or continuation) of PMR or the start of a flare….5 weeks off pred is still early days. One way or another, enjoy your time in Spain.

[Margot27 in reply to PMRCanada]

Thank you for this and for your kind comments. Strangely enough I haven't tried any paracetamol or anything, perhaps I should. I have hardly ever had my CRP/ESR tested and don't really have any idea what my normal level would be (or maybe there is a standard level).

It doesn't feel like a flare, which I think is why I didn't pick up on it straight away. As I have replied to PMRPro, I think I will take the 1mg just for the next couple of weeks until I'm back from my holiday, and then work through any consequences. At least I'll have enjoyed the holiday more!

[PMRpro Ambassador in reply to Margot27]

And THAT is the most important thing. Take plenty of pred with you - if you do, you won't need it. If you don't - you probably will!!!!

[Sharitone in reply to Margot27]

It always seems to come back different! Sneaky!

[Margot27 in reply to Sharitone]

I'll be ready...I hope!

[Canuk]

Margot should bear in mind that the 1mg of Pred -or smaller- isn't easily available in Spain, where we live. The smallest dosage available in pharmacies is 2.5mg (divisible). 1mg is available on line, but more costly . Some pharmacies insist on prescriptions for pred- but many don't. Usually it's a very low cost treatment. BTW I believe the strongest dosages in packages is 30mg.

CANUK

[Margot27 in reply to Canuk]

Thanks very much for thinking of this Canuk. In fact I still have some packs of 1mg pred. as it's not that long since I stopped taking it so I haven't handed them back to the pharmacy yet. But I appreciate you warning me about it - thank you.

[PMRpro Ambassador in reply to Margot27]

No point handing them back - they will just be chucked away. So hang on to them until their expiry date. You never know ...

[Margot27 in reply to PMRpro]

That's a shame - the packs are unopened. But I'll hang on to them then, whilst hoping 'you never know' doesn't arise! Thank you.

[PMRpro Ambassador in reply to Margot27]

I know - but once they have left the pharmacy counter they can't be reused since they could have been tampered with or kept in the wrong conditions.

[Margot27 in reply to PMRpro]

Thank you, I must admit I hadn't thought about medication being kept in the wrong conditions. It just seems a huge waste, but I'll certainly hang on to them.

[PMRpro Ambassador in reply to Margot27]

There was a case some years ago where someone had put their pred in the freezer thinking it would keep better. Pred should NOT be frozen!!

[Margot27 in reply to PMRpro]

Oh heavens, I hadn't thought of that. Mine have a date of June 2026, so that's quite lucky!

[PMRpro Ambassador in reply to Margot27]

That is pretty good.

[Suffererc in reply to Margot27]

I have hung onto mine

[Zareda]

I also finally tapered off prednisone after 4 years. I was at zero for 3 months but could feel the inflammation building. I thought I had the upper hand…..I was wrong. The inflammation took over and I waited too long. I went back on 1mg but that did nothing. I had to go up to 5mg for a week and then I felt like a new person. I wanted to stay at 5mg, but was afraid if I did the next flare would make me have to go higher. So I tapered to 2.5mg for 1 week and now I’m back down to 1mg where I plan to stay for now. It seems like 1mg holds the inflammation at bay, but zero allows it to slowly build. I have accepted that this condition is here to stay so I have to find what works for me……..😂 and then I have to tell my rheumy since he seems to be somewhat clueless. Good luck finding what works best for you!

[Margot27 in reply to Zareda]

Thank you very much for your comments Zareda, it's very helpful to hear from someone who has been in just the same situation. I would be happy to stay on 1mg for as long as it takes, the only difficulty being that I also have osteoporosis and I know that steroids are not good for my bones. 1mg is of course a very low dose and if I have to stay on that, then so be it, but I have taken note of what happened to you and will certainly keep it in mind - thanks very much. This is such a brilliant forum isn't it!

[Suffererc]

I am having the same problems. My arms ache and my legs are very stiff in the mornings and evenings. I have no grip in nth right hand.

I recently went to Switzerland to visit my son and asked my GP if I should take Pred with me just in case. The pains got no worse so I didn’t take any.

It isn’t getting any better but dread speaking to my GP because she will say it’s arthritis. It could be. I look at the Pred I have and think do I want to try …..,

Is this how it’s going to be for a year.

I have been Pred free since 1st Feb.

My eyes lit up when I saw this post 😊

[Margot27 in reply to Suffererc]

You sound very similar to me. I'm sure you'll find the replies to my post helpful. I hadn't thought about arthritis I must admit - it would be very unfortunate to get arthritis just when coming to an end with PMR. I'm going to try the 1mg approach for as long as it takes, and hope that that works. I wish you all the best. It's hard sometimes knowing what to do for the best isn't it, but this forum is the place to find out.

[Suffererc in reply to Margot27]

I am going to the GP next week to ask her advice 😂🤣she had bloods done and they came back ‘no further action’ but we all know that is not 100%. Enjoy your holiday. 😊. Ps I was 6 years on Pred

[PMRpro Ambassador in reply to Suffererc]

"It isn’t getting any better"

But is it getting any WORSE? And that really is a very important point. If there is still some underlying activity around, inflammation is likely to build up over tome. It is likely that muscles will ache for some time after stopping pred as adrenal function settles down properly and usually ordinary painkillers will help that. However, if the amount of paracetamol you need never gets less, consider whether 1mg pred every few days is not preferable - because sometimes that is all that is needed. Try to decide if it is muscle discomfort or JOINTS - arthritis can also be masked with pred but it doesn't affect muscles. There is almost always a difference.

And honestly? If it were me, I would try a bit of pred before you see the GP next week - because she is likely to dismiss any idea that pred will help. Knowing if it does or not is useful.

[Suffererc in reply to PMRpro]

Good idea. A few days on 1mg. Was going to take 5 to see if it helps then tell her 😊

[PMRpro Ambassador in reply to Suffererc]

Excellent idea - might need 5mg to kick things off,