How to address PMR pain while decreasing prednisone

I tapered to 4.5mg. but after 2 weeks have had to go back to 7.5 because of increasing pain during the night in my legs. I am being active. walking each morning, so hoping to start tapering again soon. My doctor does not really advise on prednisone amount. I think this may be because we are all different. I know the difference between discomfit and pain - can tolerate quite a lot of discomfit. However, it becomes a problem for me when it really interferes with my mobility. Being stressed by this can also initiate a flare up. I want to try o get into best mobile condition for trip to beach in November.

I feel so similar to you! I started on 20mg of Prednisone 18 months ago. Im now down to 6mg. But, I still feel a lot of discomfort, especially in my legs. I find myself taking Tylonal 1 at least once a day. My rheumatologist advised that when I have a relapse, it is totally safe to go straight back to 20mg, but only for 2 or 3 days, to reset everything, then back to where ever I was. I havent dont this yet, but am very tempted. I only reduced to 6 from 7 one week ago, and now wonder if I should have. But, I do notice each time I reduce that I have a week or so of not feeling well, and then it seems to adjust. Good luck to you!
I have a question for others as well......For those of you that have reduced to 3mg or less, do you still feel side effects? I must say, I dont think I have any now at 6mg, or maybe I am just so darned used to it I dont notice! My thought is, that if I get down under 5mg, that maybe it doesnt matter if I have to stay there??? thoughts??

Hi @ sallygoose - I started on 20mg just about a year ago and are now down to 1mg, I still have side affects and have felt quite unwell, not from the PMR but the side affects. I still have a little stiffness in my shoulders and legs but not that bad that I have to take pain relief just uncomfortable and like you it usually goes away within a few weeks if I have no stress. But as most people say, we are all different and not everyone has the same side effects or even gets them. Good luck with reducing and its a decision that you have to make about staying on the prednisone but make sure you are well informed about the affects it has on your body that you do not show up as a side effect. My Doctor was not great in informing me but I did alot of research on the internet and also joined this group which has helped me to understand what parts of your body can be affected with this drug.

What kind of side effects do you get ?

Hi @ noosat1 - I have quite bad palpatations, stomach upsets, sleeping is not good with really bad leg cramps, mood swings and feeling really depressed with crying for no reason, blood pressure has gone up, swelling of my legs, have put quite a bit of weight on and just generally feel unwell. What scares me is that I am now down to just 1mg and have not felt better from the side effects. Im trying to keep positive and say to myself that once off this it will take time to get back to normal...what ever that is.

You might actually need to go back up. When on 4.5mg. I did not want to because of eye pressure and heart condition, however had "to bite the bullet" and went back up to 7.5mg and am feeling much better. At this level I find I can make up an exercise plan and do it. Three days I go to park with Lily, dog, walk as much as I can for the 50 minutes to an hour that I stay there and three days of of walking by myself on paved trail by the river. This morning it was the park. I walked for 28 minutes before sitting down for 2 minutes (this included some additional uphill) after 2 minutes of sitting, walked another 20 minutes. Came home and feeling good. My theory is that seeing the adrenal glands put out about 7.8 mg of cortisol, the 7.5 of prednisone takes most of the burden while the glands get ready to start producing again. I'm hoping I can go down to 4mg in a week and that the adrenals will step up to the plate. 🙂

Thanks for your reply, however the side effects were there even when I had a larger dose, so just think it is taking its time to get out of my system. The PMR is manageable even on the 1mg so do not want to increase my dosage if I am coping okay, none of the symptoms I have are to do with the PMR only the side effects of the prednisone. 🙂

@lindapc Hello, I’ve been reading your posts. It sounds like the hardest thing for you is the side effects. Did these only start as your prednisone dosage got lower? I ask because I’m supposed to start a taper this summer. Last Fall, when I tapered, I had a relapse in my disease, so I’m kinda wary. Have you spoken with your doctors about the side effects?
You also sound a bit depressed—aren’t we all! Having to deal with all these issues.
Maybe you need someone to talk to. I know my husband got really tired of hearing my complaints/sadness. A therapist (and a temporary increase in antidepressants) made things so much better. I know another big concern is the weight gain. I, too, have gained weight but not from the prednisone—just plain eating cookies and ice cream, the cure for everything! My sister also gained weight from prednisone but has been able to lose it all. Don’t get too discouraged. We’re all in this rocky boat together. Please stay in touch and let us know how you’re doing. Becky

Try getting some CBD. It should help with pain, inflammation, sleep and possible make it feel at least ok to eat. I finally did this and can't believe the difference. There is no "high" with this as there's no THC involved. But it really helps me. I ordered CBD + at Amazon. Dr Oz had a doctor on and they all think its ok. Of course I still have to use my Fluocinoide 0.05% Gel 2 x's a day for now. fIts not a cure but helps get thru a flare. Best of luck to you and all of us who suffer from this illness.

I would not suggest getting CBD oil unless you’ve talked with your doctor first. They really should know everything you take. Everyone reacts differently and you don’t want to confuse symptoms with side effects with CBD oil. That being said, it does help some people but not others. Just have a chat with your doc!