Prednisone tapering is challenging. What does remission feel like?

Hi @jmcc, I have no medical training or background but I have had two occurrences of PMR. The first time it took me 3 and half years to taper off of prednisone. The second time it took a year and a half to taper off. Doesn't it feel great to be your happy self again! I think remission is just a word but if you are still taking prednisone I'm sure it's playing a part in how you feel.

You ask a really good question - can you accelerate the taper. My rheumatologist gave me some good suggestions that went a long way to help me during my tapering process - keep a daily pain and prednisone dosage log. So everyday when I was taking prednisone for PMR, I record how I felt each morning when I woke up on a pain scale of 0 to 10 (0 no pain, 1-2 some pain/aches, 10 the big hurt). I mostly tapered weekly and only if I was no higher than a 2 level on my pain scale.

I think it also depends on where you are in the tapering process. My rheumatologist provided prescriptions for 5 mg, 2.5 mg and 1 mg tablets to make it easier to taper in smaller doses. I think you have to listen to your body which it sounds like you are doing now. When I felt great I would try going down by 5 mg, if my pain was really bad the next day, I would bump my dose up 1/2 of tapered amount to see if that brought my pain down to 1-2 level. My first time around with PMR I spent 6 months going back and forth between 1/2 mg prednisone and 1 mg until I was finally able to stop taking it.

You might want to view the following discussion to learn what other members have shared.
– Tapering off of Prednisone https://connect.mayoclinic.org/discussion/prednisone/

Thanks for the tips John. So does prednisone (& meds) play a role in curing or helping to get PMR into remission or does PMR just have to run its course with prednisone, methotrexate etc. there to just help manage the pain and symptoms?

When tapering how much food do you need to take with your prednisone in the morning. Currently I take it with porridge but sometimes I don’t want to get up that early. Is there something to keep by my bed that I can take at say 5 to 6 am that is easy and enough food to get the job done so I can fall back asleep

I think prednisone plays a role since it reduces the inflammation causing the PMR pain. Here's the more technical answer 🙂

"Prednisolone works by blocking the effects of certain chemicals that cause inflammation inside your body. It does not cure polymyalgia rheumatica, but it can help relieve the symptoms. When used to treat polymyalgia rheumatica, prednisolone is taken as a tablet." -- Polymyalgia rheumatica - Treatment - NHS: https://www.nhs.uk/conditions/polymyalgia-rheumatica/treatment

Everything I've read, including what the pharmacist told me was to take it with food. This is because it can cause upset stomach and gastritis. That said I normally took my medications including prednisone before eating and never had an issue with an upset stomach. It would be a good question to ask your doctor or rheumatologist. I think it depends on the individual and the warning is to prevent an issue from taking the prednisone. I normally get up at 5 am and have a routine of things to do after which I take my medications. Then it's sometimes an hour or longer before I eat anything. I'm sure others have similar and different routines when taking meds.

I have been taking prednisone for 2 1/2 years now. I take it about 7-7:30am and eat a few raw nuts with it or maybe 1/2 banana. You can always take it with a small glass of milk or nut milk too. I have taken it without eating food and have never had a problem with it. I do try to respect the warning as I have had gastritis before and it can be very painful. Do you take Prednisone at 5 am to help with early morning pain? Once you get control of your pain, you may be able to delay until 7-8am.

For my stiffness to go away takes about 5 to 6 hrs so if I want to do something physical I take it earlier in the morning I will probably find a small snack to keep on my night table and take my prednisone without having to get up I have tapered down from 40 mg to 10 since May now next week 9 so far so good

I am on 9 mg daily now and stiff each morning. On a stiffness scale usually a 3 to 5 out of 10 by 11 am I am fine. Each time I have tapered before and after the dose reduction I have been stiff. Does anyone experience no or minimal stiffness while tapering. I will go to 8 mg after a month. I am wondering if I am tapering too fast. I have been following a recommended schedule.

@skiing, I always had stiffness in the morning when I was tapering off of prednisone and it usually went away after I was up and around for awhile. I adjusted my tapering based on pain and aching and not so much on the stiffness but each of us are different. I'm no expert but I don't think tapering monthly is too fast unless your body is telling you it is with too much pain when you do taper down.

I always keep an Ensure nutritional shake (to protect my stomach from the prednisone), water bottle and medication at my bedside so I don’t have to get out of bed on those rough days.