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!

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I wonder if it's the side effects of coming down off the Prednisone. When I came down from 10 to 7.5 mg, what pain I had all over. So, when it repeated happened from 7.5 to 5mg, and then from 5 to 4mg, my doctor started tapering me slower. From 4mg and 3mg every other day, so 4, 3, 4, 3, etc. for a month. Then 3 mg for a month and then the same thing with 3 to 2mg (3, 2, 3, 2,etc). Then 2, then 1, and now none. Even though it took a little longer, the tapering down was so much easier on my body. Just food for thought!

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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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I am taking just a half tablet of Zetia When I told my PCP I was splitting the pill she was somewhat leary that it would work. My numbers were good. Cholesterol was 170 and LDL was 91. So she said ok and wrote my next script for half a tablet. Why take more than you need. Works for me.

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@pmrsuzie

I am taking just a half tablet of Zetia When I told my PCP I was splitting the pill she was somewhat leary that it would work. My numbers were good. Cholesterol was 170 and LDL was 91. So she said ok and wrote my next script for half a tablet. Why take more than you need. Works for me.

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Thanks so much for the reply! I'm glad it's working for you, and I completely agree about using the minimum amount of medication. Every body is different, and the FDA-approved recommendations are based on what was tested and the aggregate of the results...it doesn't always mean that what wasn't tested isn't effective.

But you know what? I just looked it up and there's a study that was published over 10 years ago that concluded that both 5 and 10 mg dosages of Zetia were clinically equivalent and the lower dose might mean fewer side effects for some people: "These data strongly suggest that ezetimibe 5 mg and ezetimibe 10 mg are clinically equivalent with respect to LDL-C reduction and achievement of ATP III LDL-C goals."
https://pubmed.ncbi.nlm.nih.gov/18837641/
So we're not alone in our thinking and experience. Thanks again.

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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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Thanks for sharing. My dad can't take atorvastatin either. It may or may not have contributed to his PMR and even if it didn't it caused him severe fatigue and muscle weakness... He was on the highest approved dose, which may have been the problem, but we're too nervous to try it again. He was prescribed Crestor, but that led to acute liver damage so that's a no-go... We tried fiber and plant sterols, but his GI tract can't seem to handle it, and that's what brought us to the Zetia. I think it's going to be Zetia or bust for us (meaning we'll probably accept the risk of going without medication and do what we can with diet while hoping he continues to recover from PMR and stroke), so I'm hoping he can tolerate it so we can do something to marginally lower his risk of a cardiac event a little more.

His cardiologist is willing to refer him to the specialty lipid clinic where they evaluate for the new biologic cholesterol medications, but they seem to have a pretty high incidence of side effects.

Thanks to @pmrsuzie, I was able to figure out there is some literature to support that 5 mg Zetia can be effective, which is good to know. Guess we can all give it a try and see if it helps.

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@pmrsuzie

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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Another proof that some doctors ignore, the skin as a sponge for we come in contact with. If a NSAID can not be taken orally, why would it be suggested to be applied topically? My wife used Voltaren long ago when it was R/X only for her knees before surgeries, allowing me to read the specific instructions showing the exact size to scale of maximum amount of gel to be applied. The enclosed instruction sheet mentioned possible stomach side effects and to be taken with food only, plus that it can be fatal over time if over applied. For that reason, I do not use it and stick to the good old 600 mg Ibuprofen in R/X form to protect the stomach lining, compared to the OTC version. Has your husband ever tried taking a Turmeric supplement? This also has to be taken conservatively, but is very functional for inflammation. I am sorry for your husband and your discomforts, wishing you both a discovery of sorts for some relief.

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@oldbtstlshrp2

Another proof that some doctors ignore, the skin as a sponge for we come in contact with. If a NSAID can not be taken orally, why would it be suggested to be applied topically? My wife used Voltaren long ago when it was R/X only for her knees before surgeries, allowing me to read the specific instructions showing the exact size to scale of maximum amount of gel to be applied. The enclosed instruction sheet mentioned possible stomach side effects and to be taken with food only, plus that it can be fatal over time if over applied. For that reason, I do not use it and stick to the good old 600 mg Ibuprofen in R/X form to protect the stomach lining, compared to the OTC version. Has your husband ever tried taking a Turmeric supplement? This also has to be taken conservatively, but is very functional for inflammation. I am sorry for your husband and your discomforts, wishing you both a discovery of sorts for some relief.

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oldbtstlshrp2, thank you for the well wishes. We'll have to research the turmeric supplement. The injections he got in his hands were painful but he's feeling better now. The only cream he might use would probably be unscented aspercreme.

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@pmrsuzie

oldbtstlshrp2, thank you for the well wishes. We'll have to research the turmeric supplement. The injections he got in his hands were painful but he's feeling better now. The only cream he might use would probably be unscented aspercreme.

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Turmeric is not for everyone. I avoid it because it's high in oxalates and I have a reaction to it.
There are some warnings about the supplements, which are higher in dose than used in cooking. Some people are sensitive to it.

"Who should not take turmeric?
Doctors advise against some people taking turmeric, including:
pregnant people and those who are breastfeeding
people having chemotherapy
people with liver or bile duct problems
people taking anticoagulant or antidiabetic medications
people who had surgery within the past 2 weeks"
https://www.medicalnewstoday.com/articles/318405
There are some medications listed that turmeric supplements should not be taken with at this link too.
https://www.medicinenet.com/which_medications_not_to_take_with_turmeric/article.htm

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@wfroslansky

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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I split my dose also and also take a small dose between 12 and 3 am to prevent morning pain and stiffness. I take tramadol as needed for pain. Had to add a dose in the night to control pain. 3 years of prednisone and i'm at 6 mg now. This getting off is not easy!

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You come this far, your almost there. There is a light at the end of the tunnel. I was on 60 mgs of Prednisone and 14 months later, I am totally off of it. I had to do pain management as well in between and gradually started lowering my dose as the pain increased. The best advice, wean very slow and steady. Even if you have to next month do 6 and 5 mgs every other day alternating. Then the next month would be 5mg, the next month 5 and 4 every other day alternating, etc. The pain was manageable for me this way and it subsided eventually on it's own for the most part with little intervention. Keeping my fingers crossed for you and a few prayers to go along with that.

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@ill

I split my dose also and also take a small dose between 12 and 3 am to prevent morning pain and stiffness. I take tramadol as needed for pain. Had to add a dose in the night to control pain. 3 years of prednisone and i'm at 6 mg now. This getting off is not easy!

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"Had to add a dose in the night to control pain. 3 years of prednisone and i'm at 6 mg now. This getting off is not easy!"

It took me more than 12 years to get off prednisone. Just be mindful that at 7 mg and less is when adrenal insufficiency comes into play. It might be hard to "stimulate" the adrenals when you take a Prednisone dose at night. I understand the pain at night is a problem.

You have to maintain a low enough prednisone dose for your body to sense a low cortisol level. This will help the adrenals to know that it is time to produce cortisol again.

Adrenal insufficiency is also a painful experience to contend with. At lower doses of prednisone it might be a combination of PMR and prednisone withdrawal pain.

You are absolutely correct --- getting off prednisone isn't easy. I'm not so sure adding a dose at night will help the problem of adrenal insufficiency. Cortisol levels are supposed to drop during the night. A Prednisone dose at night might suppress adrenal function even more.

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