Tapering Pains Body Response or PMR?

"I am unable to distinguish if the stiffness and aches are from the tapering or from PMR."
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It doesn't have to be one or the other. It can be a combination of both.

I wasn't allowed to taper below 3 mg until my cortisol level improved. I waited 6 months for that to happen. When my cortisol level improved, an endocrinologist said it might be safe to discontinue Prednisone.

The only reason I could stay on 3 mg of Prednisone was because I was on a biologic that controlled my PMR symptoms without suppressing my adrenal function..

In Boolean logic terms:
Adrenal insufficiency and PMR are two conditions. When both conditions are met, then it might be easier to taper off Prednisone.
1) When my cortisol level improved, the problem with adrenal insufficiency wasn't a factor.
AND
2) PMR was being treated with a biologic instead of Prednisone. PMR wasn't a factor and my adrenals were no longer suppressed.

There was a third factor ... a different autoimmune disorder flared. That factor was dealt with after I tapered off Prednisone the first time.

My primary care doctor was fond of saying ... "everything in medicine is multifactorial."

Thats a really good question. I wont bother sending you links but just google prednisone taper or prednisone and cortisol. 1000's of articles. my thought is after 2 wks your body quits producing cortisol. Prednisone is now doing it for you. When I see a comment that someone is having a flare around the < 7mg mark, I generally think its the cortisol trying to restart not the PMR. From our perspective, whether its the prednisone or the PMR the pain is about the same. Everyone calls it a PMR flare. But what happens is the lack of cortisol can start the pain and then PMR restarts. This pain from the taper can also resurface other auto immune conditions. Now the Dr will try to add other drugs to keep the PMR in check making it easier to taper the prednisone. It can be a never ending cycle. This is probably where a good Dr will try to test your blood markers and see what the next step should be. My thought that at 1mg you are so close that its probably the prednisone but it could easily restart PMR. Your not going to be pain free when you get off prednisone. Internet say it can take up to 6 months. If you go back up try to go back down as quickly as you can to just at the pain level. Keep bumping it a little at a time. You should be able to make it from 1mg. You will need your Dr help with testing to see what is going on. If its prednisone taper Tylenol or other pain medication may help at the lower levels.

I like your advise. I struggle with the same. What do you mean in your last paragraph
If you go back up, go back down…
And
Keep bumping it a little at a time. ??

Thank you.

I think and particularly my case the sooner you can get off prednisone the easier it will be. If you have been on for years it gets really difficult to taper off. As soon as you reach the cortisol wall it can easily restart the PMR. When I tapered my research into this drug was when I reached the taper wall and could barely get out of bed I then bumped it back up for a couple of days. My taper wall was 5 mg. So i went back to 10mg for a couple days then dropped to 5. It seemed if i went back to 5mg the pain stayed with me. I needed to go up higher. If your pituitary is trying to restart and your PMR markers are good you should be able to go back and forth in just a few days. The longer you stay at say the 10mg the harder to move back down. By bumping it , I mean just keep trying to push up against that taper wall. Go in smaller increments but whatever your wall is just keep pushing(bumping) it to the pain level. There will be some pain. In about 6 weeks I was able to go from the 5mg to off. This worked for me.

Can you all tell me how long you are typically on prednisone when you are discussing the tapering here? I started in May; recently, I tried to go from 10 to 7.5 per my MD, but symptoms increased. I went back to 10 after messaging MD through mychart, but honestly, no improvement in symptoms now over what I felt at 7.5. In fact, I think today is worse. I have been back on 10 for about 4 days. I'm so confused. My appointment is in two weeks and I don't even know what to tell her.

Going from 10 to 7.5 is a big jump.
My schedule from 10 to 5 was at 1 per month, and that has not been a difficult path to follow. Below 5, my schedule is now 0.5 per month. Again, no problems.

well thats the thing. just like what started the disease everyone is different. I think there can be different levels of PMR. I think that men have an easier time than women. some statistics show that. I feel like I was pretty lucky to have my PMR markers(ESR and Sed rate) showing no inflammation in 4 months. I started my taper at 4 months and was off in 6 months. With 2 flares trying to do so. I really think that since May is not enough time to start your taper . I was also on an equivalent of 10mg prednisone for the last two months but I started at 20mg. Then went to 15mg after one week. Then 10mg before 2 weeks ended. Then on 10mg for 4 months. I wont copy the sites but this disease can last 1-3yrs. If Dadcue responds he was on prednisone for 10 plus years and still taking Actemra to control the symptoms, I would say likely your PMR is not in remission yet and you may need a little more help. I would have your DR. pull your blood in 2 weeks to check your markers before agreeing to try to taper. But the sooner you can get off the better. Your Dr knows that.

My mantra is there isn't any "best way" to taper off Prednisone.

There are some guidelines that are good but applying the guidelines doesn't lead to uniform results for everyone. My experience with Prednisone tapering is actually 30 years --- roughly 15 years before PMR was diagnosed and 15 years after PMR was diagnosed.

My first 15 years before PMR were characterized by high doses followed by a fast taper. I would take doses upwards to 100 mg and taper off in a month or two. I did these tapers countless times. I guess it depends on what condition is being treated because I wasn't treating PMR back then. Granted the high dose/fast taper approach didn't work after I was diagnosed with PMR.

My 15 years of taking Prednisone for PMR needs to be subdivided. The way I tapered for the first 12 years was unlike the last 3 years. The last 3 years introduced another variable called Actemra.

My first 12 years after PMR was diagnosed were painstakingly slow. I tried every way I could think of and nothing worked well. Predetermined tapering methods failed every time. I adopted the "depends how I feel method of tapering." It wasn't a predetermined method because I adjusted my Prednisone dose based on my symptoms. However, I tried to maintain a "stable dose" for long periods of time. My rheumatologist said a stable dose was more important than any tapering scheme.

My rheumatologist knew there were many factors to consider in my case. I wasn't a straightforward case of PMR. In my opinion there aren't straightforward cases of PMR because everyone has a different set of factors to consider.

A low cortisol level was another factor that was introduced after I got into single digits of Prednisone. My first referral to an endocrinologist was disappointing. I was on 10 mg of Prednisone. The endocrinologist said there wasn't anything she could do if I still needed Prednisone for PMR and my "other conditions." The endocrinologist referred me back to my rheumatologist but said I should come back to see her when I was on 3 mg of Prednisone.

A year or so later my rheumatologist wanted me to try Actemra which was a game changer for me. I tapered by 1 mg per month for the first 3 months ---10 mg to 7 mg in three months. Since I felt well I decided to taper faster --- 1 mg per week until I reach 3 mg. My rheumatologist referred me back to the endocrinologist when an a.m. cortisol level was low. I was told not to attempt tapering any lower than 3 mg.

My cortisol level improved after staying on 3 mg for approximately 6 months. The endocrinologist finally said my cortisol level was adequate but didn't know what would happen if I discontinued Prednisone. The endocrinologist said there wasn't any need to taper because 3 mg was a low dose and my cortisol level was adequate. I did a "countdown taper" --- 3 mg to 2 mg to 1 mg and zero in a week. I was at zero for a week the first time that I tapered off prednisone.

Things didn't go well and I needed to go back on 60 mg temporarily. The reason had nothing to do with PMR. Those other conditions I had during my days before PMR were still there so Actemra was stopped even though it worked well for PMR. When I tapered from 60 mg to 15 mg like I used to do before PMR was diagnosed, I got stuck on 15 mg again with PMR symptoms.

A rheumatologist, an ophthalmologist and an endocrinolgist all had different suggestions but eventually I was allowed to decide what I wanted to do. I wanted to go back on Actemra to treat PMR and to be off Prednisone. After Actemra was restarted for PMR, I went from 15 mg back to zero in 3 months.

My main point is -- there is no best way to taper off Prednisone. There are too many factors that are unique to every person to say a single way to taper off Prednisone will work for everyone.

A
Has anyone been prescribed Methotrexate at all my consultant wants me to start this by injection but I have heard that the side effects can be severe

Thank you

You might want to give methotrexate a try. It is standard practice to try methotrexate when someone has difficulty tapering off Prednisone.

I tried methotrexate and had mixed results. One of the reasons methotrexate was tried was because the adverse effects are probably less than Prednisone. It is called a "steroid sparer" for this reason. Most rheumatologists would prefer that you be on methotrexate and less Prednisone. Some people get off Prednisone altogether when methotrexate is tried.

The nice thing about methotrexate which isn't true about Prednisone is the following:

If methotrexate doesn't work or you can't tolerate the side effects it is easy to stop taking methotrexate. You can just stop methotrexate whenever you want -- no taper is needed. This is a big plus when you consider how difficult it is to discontinue Prednisone.

Have you ever done a side-by-side comparison of Prednisone side effects compared to Methotrexate? Methotrexate seems to have fewer and less bothersome side-effects than prednisone in the studies I have read. Methotrexate might not relieve your symptoms as well as Prednisone so there are some trade-offs.