Weaning off of prednisone & pain management

Posted by joan7 @joan7, Feb 25 9:11am

Last Tuesday, I went down from 7.5 mg of Prednisone down to 5 mgs. For the past 4 days my pain level has been a 12 out of 10. I could barely walk. Although I hate to take Advil, Motrin, etc., I took 2 Advil Gels and within 1 hour I felt better (not perfect, but a lot better). Hours later the pain started to come back but was maybe a 6 out of 10. The next morning I was crippled by the pain all over again. I forced myself to get moving, but could barely get around. Drank a lot of ice water, and before I went to bed, I raised the head part of my bed up and fell asleep. Woke up this morning with very little pain. Has anyone experienced any type of correlation between raising your head up vs laying flat, and the amount of pain you will experience? Had that slight change made that much of a difference in your pain level? I have found that drinking almost all my drinks with a lot of ice, definitely helps with internal inflammation. What are your experiences or thoughts regarding this matter? Thanks!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

During my quest for sleep while on Prednisone, (on your side) I discovered that placing a pillow between my knees helps the lower back and legs relax. Even though this helps while in bed, my legs are still only partially functional when walking after getting up for the first hour or so. I constantly experiment for means of improvement while enduring the splendid Prednisone. What's it going to do; hurt?
I am appreciative of those on this site that share their experiences and methods for coping with the PMR.
Thank you all.

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I’m about to drop to 10 mg. But also started an anti inflammatory diet so hoping the two together will help

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I have a sad story. Was also at 10 after reducing very slowly, when both my inflammatory markers shot up (ESR 51 and C-RP 12.6) after being in the normal range since starting on pred last January. Also WBC and neutrophils are quite high. So back to 12.5 pred, and on hold with MDX also, current dose 15 mg and was supposed to go to 20 mg tomorrow. Have no explanation for this flare, just very discouraged. Didn’t really have much of an increase in pain, since I’ve never been pain-free. Feeling a little jittery today and dreading the return of insomnia.

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So sorry your going through this. My doctor started me at 40 mgs. It would be interesting to know how many people were able to get off the Prednisone starting at 20 mgs. My doctor just mentioned to me that virus, bacterial infections, etc. will cause your immune system to kick in and that's when the PMR tends to return.

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@oldbtstlshrp2

The Voltaren is an interesting topic. Even though it is a NSAID/Ibuprofen base, my Rheumatologist/P.A. instructed me to apply it to the pain areas four times per day. I reminded her that it was an NSAID and she replied' "It's on your skin". Isn't the skin the largest membrane of our body? I have applied it to my lower back area once or so daily, but not four times per day, but still conservative. I do really miss the Ibuprofen over the Acetaminophen for pain and irritation relief.

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This comment is about Voltaren. My husband has OA in his hands, bone on bone in a couple places. At the ortho Dr last week we asked about creams. The Dr said he has had some patients develop stomach issues with Voltaren even though it's a cream. My husband in the past developed a nasty ulcer from Advil.
No Voltaren here.

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@dadcue

The following link spells it out. However, there is considerable controversy about what the "best way" actually is for weaning off prednisone while still managing the pain.
https://emedicine.medscape.com/article/330815-treatment
"Joint guidelines from the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) conditionally recommend starting corticosteroid therapy with 12.5-25 mg/day of prednisone or the equivalent. [30] A systematic examination of the peer-reviewed literature, which included 30 studies, found that most patients seemed to achieve remission of PMR with a starting dose of prednisone at 15 mg/day. A slow tapering of the prednisone, less than 1 mg/month, was associated with fewer relapses. Once prednisone is tapered to 10 mg/day, a further slow taper by 1 mg every 2 months until treatment discontinuation was associated with optimal control of disease activity. [43]"

From my personal experience of 12 years taking prednisone for PMR, there are no magic ways that work the best for everyone. There were some approaches that worked best for me personally.

I have decided there is no "best way" and you have to do "what works best for you." That doesn't mean to "self-medicate" and go it alone. I tried that too and it didn't work.

You need to work with your doctor until you find a way that works for both you and your doctor. Easier said than done! I gave my rheumatologist most of the credit but WE eventually found a way. I have been off prednisone for 2 years with minimal pain. I have mostly recovered from prednisone side effects.

The link above also provides some alternatives to long term prednisone when the recommendations don't work. I think you still need to give prednisone a year or two before the alternatives are tried. This time frame is usually followed unless you experience considerable side effects from prednisone earlier than some people.

Sometimes PMR isn't "self-limiting" like it is supposed to be. However, the side effects from long term prednisone use are well documented. In fact, any dose of less than 7.5 mg is extremely problematic and may also be a prednisone side effect acquired from long term use. This probably explains why you need to go slower when you reach single digits of prednisone.

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I am tapered down to 4 from 15. For the last month my hands have been sore. My question is if I continue to taper and most of my discomfort is sore hands can I safely live with that without causing some other damage? My rheumatologist is nervous about my continuing to taper. Current plan is taper one mg per month so ideally I have 4 months left on prednisone.

I also have a theory that splitting my dose into twice a day might be helpful so that is what I am trying. I don't want my body to think there is an abundant extra supply but I am not a doctor and have no way to substantiate my theory.

I also am experiencing some light headedness which I had investigated at the emergency room with no definitive finding. Investigation included catscan ekg and bloodwork.

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@art43

Starting in October, initially on P20, my dose had to be adjusted to P30 to tame the PMR beast. I started tapering after 30 days at 5 per month, then 1 per month, now down to P7.
During my last rheumy visit in January, she said my inflammation markers were now normal, and we were no longer treating PMR. The goal is therefore to get off the prednisone as quickly and safely as possible, and to therefore continue the 1mg monthly taper. Also, that my wrist pains could be expected to continue, and that I could take Tylenol, NOT any NSAID due to the conflict with the prednisone.
During a routine cardiology visit in February, I happened to mention my ongoing wrist and thumb pain (which at that time was up to level 3 in the morning, but went away by 3PM). My cardiologist ordered a wrist Xray which did not disclose any sign of any of the arthritises. Also, my RA lab was normal. And so, the morning wrist pain remains an undiagnosed mystery which I will continue to willingly tolerate, especially as I recently increased my morning Tylenol to 1000mg which make me pain-free by 10AM. In any case, this morning pain is almost certainly NOT something that should be treated with an increased dose of prednisone. Unless it can be determined using testing that the pain is in fact or probably PMR, increasing the prednisone is probably not the correct solution for so many reasons, the main one being that it might make tapering to zero much more difficult without risking adrenal insufficiency.
My rheumy did give me permission to use OTC topical diclofenac 1% on my wrists if desired. Although diclofenac is an NSAID, if used topically only about 5% gets into your circulatory system and therefore does not create a problem with the concurrent prednisone as it would do if the diclofenac were taken orally in pill form. For the time being, I have decided that my current pain profile does not warrant experimenting with yet another drug.
Thought for the day: After being treated for PMR, returning pain is not always PMR, and should not be automatically treated with an increased dose of prednisone without testing and a doc agreeing.
Best of luck to everyone…this too shall pass !

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@art43
There is an alternative to voltaran topical.
Original Aspercreme (10% Trolamine salicylate) pain relief cream.
Aspercreme is better for larger area joints. Voltaran targets the smaller joints like hands and wrists.
I usually use the Aspercreme on my shoulders and thigh and calf area, where it works real good for me.

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@pmrsuzie

I also have had a cholesterol problem, probably genetic from my dad. I tried a couple statins, thought they caused muscle contractions in my hand, so my pcp suggested zetia, 10 mg. I am splitting the tablets in half, my last cholesterol test was 170 so I feel okay that a minimal dose is working.

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Hi- I was just wondering, are you still taking just half a tablet of Zetia and if so is it working for you?

We’re considering resuming a trial of it for my dad because it’s possible the diarrhea he experienced before may have been from something else and his numbers are still a bit risky so we’re reconsidering it. Thanks and hope you’re well!

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@emo

Hi- I was just wondering, are you still taking just half a tablet of Zetia and if so is it working for you?

We’re considering resuming a trial of it for my dad because it’s possible the diarrhea he experienced before may have been from something else and his numbers are still a bit risky so we’re reconsidering it. Thanks and hope you’re well!

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When I was on prednisone, atorvastatin was started for total cholesterol readings over 300. When Prednisone was discontinued my total cholesterol was below normal when I stayed on the same dose of atorvastatin My atorvastatin dose was decreased to half of the lowest mg tablet available and my cholesterol level was still too low.

After atorvastatin was discontinued my total cholesterol was slightly higher than my endcrinologist wanted. He said I was "extremely sensitive" to atorvastatin after discontinuing prednisone and didn't want to restart another statin.

I'm now on 10 mg of Zetia which was started a few months ago. My cholesterol levels were finally in the middle of the normal ranges the last time they were checked. Zetia seems to work for me. However, I'm waiting for my cholesterol levels to be checked again to see which way they are trending.

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@dadcue

When I was on prednisone, atorvastatin was started for total cholesterol readings over 300. When Prednisone was discontinued my total cholesterol was below normal when I stayed on the same dose of atorvastatin My atorvastatin dose was decreased to half of the lowest mg tablet available and my cholesterol level was still too low.

After atorvastatin was discontinued my total cholesterol was slightly higher than my endcrinologist wanted. He said I was "extremely sensitive" to atorvastatin after discontinuing prednisone and didn't want to restart another statin.

I'm now on 10 mg of Zetia which was started a few months ago. My cholesterol levels were finally in the middle of the normal ranges the last time they were checked. Zetia seems to work for me. However, I'm waiting for my cholesterol levels to be checked again to see which way they are trending.

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I am really happy that you found something that worked for you. I have not had normal blood work for at least 16 years (especially my liver enzymes - alt & ast). Finally, I just had blood work done last week and I'm finding my change in diet habits, and doing a lot more physical work outdoors is paying off and really helping my numbers. I had PMR and was on Prednisone for the past 14 months. So, I know the feeling of when something works and you have that "thank God" moment. What a relief, right?

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