Prednisone tapering and extreme sweating

Posted by tigre24 @tigre24, Sep 12, 2023

Anyone experiencing extreme sweating while tapering prednisone? I tapered from 9 to 8 after one month and am experiencing extreme bouts of sweating during the day. I am drinking no alcohol, decaf coffee and no sugar😩

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@johnbishop

Hi @jj8431, Welcome to Connect. Sorry to hear you are having the extreme sweating side effects from prednisone. Connect is a great place to share and learn from each other on what works and helps with our treatments. For my 2 occurrences of PMR, I just took my days prednisone dose in the morning along with my blood pressure meds. I never needed to split my dose because it kept me pretty much pain free until the following morning when I would wake up with some stiffness and at times a little pain. My rheumatologist had me keep a daily log with my levels of pain and prednisone dose for the day which really helped when tapering. If my pain was higher than 2 to 3 on my scale, I wouldn't taper down to the next lower dose and would either stay at the current dose or increase by half of my previous taper depending on my level of pain. The one lesson I learned from my rheumatologist was we are all a little different with levels of pain and when tapering we need to listen to our bodies and taper accordingly.

I was started on 20 mg prednisone for both occurrences of PMR but I know others that have started on lower doses so I've often wondered if the starting dose may be the problem when the pain doesn't stay controlled during the night.

Has your rheumatologist offered any suggestions to help with the extreme sweating?

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Hi John, thanks for your reply. Sounds like a split dose might have worked for you too since you did wake with some pain and stiffness. I never wake with any pain or problems, pain free daily ever since I did the split, except for one time that I forgot to take my 5 mg in the evening. I woke in the morning with pain in my hips, shoulders and wrists, that is when I realized I forgot my evening dose. Of course, everyone is different.
It makes sense how you did your tapering, that is how I would like to do it also, by listening to my body. I was amazed that the 10, (5mg am, 5mg pm) has kept me pain free. I hope I am just as lucky at the next taper. I pray I am not like those other poor souls who have had this PMR for 6 or 10 or 20 years, sounds very discouraging.
I did tell my doc about the sweating, she thought maybe lowering the dose might help, but it did not.
Thanks again for your help.

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@terrym

As far as split doses.

My PCP first diagnosed my PMR while I was waiting to see a rheumatologist. We started at 20mg once a day and when we followed up a week or so later, I mentioned that it seemed to start wearing off before bedtime and it was very uncomfortable sleeping. So we made the logical decision to split 10 and 10 morning and evening and things worked out great.

A month and a half later, I finally had my initial visit to the rheumy, she confirmed it was PMR, but then went on to question why I was on such a "high dose" and why I split doses. I felt this was in a very condescending way! She insisted I start tapering immediately by 2.5 on a two week schedule and was very insistent I only take in the morning. So I went to 17.5 in the morning and a couple days later the pain and stiffness returned pretty significantly. I went back to 10/10 for a couple of days and immediately improved. I then went to 10 morning and 7.5 evening and this worked with minimal shoulder pain. I've since tapered to 10/5, maintaining the same minimal shoulder pain. I will keep the split dose and tapering at a schedule my body tells me is OK. Also, per other recommendations in these discussion, I will stick to a 10% taper to avoid shocking the system.

My personal opinion is that some doctors are "book learners" and stick to the "published game plan" while others are "listeners" with good common sense. I'm glad many here have good common sense doctors and encourage the others to have a heartfelt discussion with their doctor. At my follow up in a couple of months, I will have a frank discussion on what works with me and will mention about this forum. I will be open minded to her suggestions as well, but if she still doesn't listen to what my body is telling me, then I will need find another doctor.

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Wow, that is my exact beginning story. My PCP started me on 20. I had the breakthrough pain in the middle of the night. My PCP ok'd the split, at my suggestion (because I learned it was an option from this forum:), but my body was telling me also. When I got to the Rheumatologist, a month later , she said she was ok with the split, said whatever works. I can't believe some docs are so rigid in their practice patterns. I would be looking also if my doc wouldn't listen to what I was saying.
I will have to research more on that 10% taper schedule. It makes sense, I know it needs to be done slowly, I know the relationship to the adrenal glands, but I can't imagine being on Prednisone another 10 months, yuk! I know, I know, I can't hurry this but I want to....

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I do not have PMR, but was looking for any possibility that my excessive sweating might be caused by weaning off prednisone. I was on 1200 mg for five days when I suddenly lost the sight in my right eye and docs thought I may have Giant Cell Arteritis which could wipe out the other eye as well. Thankfully that was not my diagnosis. But I was on this awful drug and now have to wean off. Started prednisone Aug 23, 2024. Oct 29 I am on 30 mg and the last few days I have been sweating profusely. Anybody have similar side effects?

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@jj8431

I have extreme, unbearable sweating with activity, not related to tapering. I have been on Prednisone for only 2 months due to a new diagnosis of PMR. Started at 20, then 15, now 10 and will be on 10 for the next 2 months per my Rheumatologist. I do split dose, am and pm, since the first week. Prednisone wore off at 2-3 am causing me to suddenly wake up with pain in all joints. Split dose is perfect for me....but the sweating is out of control---profuse, hair dripping, soaked shirt on the back whenever I get up to move. Prednisine kicks in approx. 2 hrs after taking in the am, that is when I begin sweating with movement. I had to bring a commercial fan into the house, stop working (usually cleaning or cooking), sit in front of the fan to recover. I do not like prednisone and want off quickly. I don't know which is worse, the PMR pain or the side effects of Prednisone. I am also now experiencing some skin breakdown in odd places, like skin peeling, scraped off, leaving open areas that scabbed over. It also cause me to talk a mile a minute and gives me so much energy, which is a good thing, (my husband accuses me of being on "drugs";), but I can't do much with it because I am soaked and miserable from the sweat. Anyways, that is my story about sweating and Prednisone. I did discuss this with my doc and was hoping that reducing to 10 would lessen the symptoms but it did not.
I love this forum, I love reading everyones story, they are different and interesting. I have learned so much. Thank-you!
I just met a fella recently at a party, who has had PMR for 2 years and on Prednisone once daily. We shared stories and he tells me he wakes every morning in pain and doesn't feel better until a couple hours after taking his Prednisone. I asked why he has not tried a split dose. He said he never heard of that, no one ever told him and did not know it was an option. I wonder why some Rheumatologist's don't recommend this and insist on a single dose when they know Prednisone only stays in the system for 16-22 hrs. Well, I guess that is another topic of discussion.
Thanks for allowing me to contribute to this discussion.

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Welcome to the PMR Club. First I will reply to your wonderings about why more doctor's don't suggest splitting the prednisone. The way they suggest taking it - all in the morning better mimic's your bodies' natural rhythm of producing steroids. For me, if I were to split the dose I would not be able to go to sleep at night. Even on 5mg the prednisone wakes me up and I am super active. By around 8pm I am calming down if I took the prednisone before 6am. Consider yourself fortunate that splitting the dose works for you.

Next I will speak to the sweats. I had drenching night sweats for two years and then I had a hysterectomy. They stopped. My IBS-D stopped as a result of the hysterectomy as well. While I was having them, I slept on a towel to keep my bed sheets from needing to be changed daily. Then in July of this year the night sweats returned, not nearly as bad. I am also having a few day sweats. I am currently not on steroids. Have not been since this March. I now have an Infectious Disease doctor investigating. I had bronchitis in Sept, took a dose of doxycycline. I felt better than I have felt in over five years. Doxy is an antibiotic with an anti-inflammatory characteristic.

Each person's journey is different. We share many things in common, but no two stories are the same.

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@jj8431

Wow, that is my exact beginning story. My PCP started me on 20. I had the breakthrough pain in the middle of the night. My PCP ok'd the split, at my suggestion (because I learned it was an option from this forum:), but my body was telling me also. When I got to the Rheumatologist, a month later , she said she was ok with the split, said whatever works. I can't believe some docs are so rigid in their practice patterns. I would be looking also if my doc wouldn't listen to what I was saying.
I will have to research more on that 10% taper schedule. It makes sense, I know it needs to be done slowly, I know the relationship to the adrenal glands, but I can't imagine being on Prednisone another 10 months, yuk! I know, I know, I can't hurry this but I want to....

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If your rhueny is good with the idea I developed my own titrating schedule that included going down 1/2 mg for one week starting at around 5-6mg then I would drop another 1/2 mg for two weeks, repeated this until I was down to none. I agree that if the PMR pain returned I would return to the last pain free steroid level and restart titrating after 30 days. I was able to cut about 6 weeks off of my timeline by doing this. Just an idea. Best to you on your journey.

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@joyceinil

I do not have PMR, but was looking for any possibility that my excessive sweating might be caused by weaning off prednisone. I was on 1200 mg for five days when I suddenly lost the sight in my right eye and docs thought I may have Giant Cell Arteritis which could wipe out the other eye as well. Thankfully that was not my diagnosis. But I was on this awful drug and now have to wean off. Started prednisone Aug 23, 2024. Oct 29 I am on 30 mg and the last few days I have been sweating profusely. Anybody have similar side effects?

Jump to this post

I certainly remember episodes of profuse sweating when on higher doses of Prednisone. My episodes weren't restricted to the "night sweats" so many people refer to. I'm sure the episodes were Prednisone related because I'm off Prednisone and those episodes don't happen anymore.

I'm almost certain it is an endocrine related problem when you look at all the conditions that can cause diaphoresis.
https://my.clevelandclinic.org/health/diseases/24496-diaphoresis
I'm a man and now I completely understand what it is like to be "hormonal."
Prednisone has a profound effect on endocrine system that shouldn't be underestimated. I think anyone treated with "long term" Prednisone should be referred to an endocrinologist. I didn't learn about all the hormone imbalances I had from Prednisone until I was referred to an endocrinologist.

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@dadcue

I certainly remember episodes of profuse sweating when on higher doses of Prednisone. My episodes weren't restricted to the "night sweats" so many people refer to. I'm sure the episodes were Prednisone related because I'm off Prednisone and those episodes don't happen anymore.

I'm almost certain it is an endocrine related problem when you look at all the conditions that can cause diaphoresis.
https://my.clevelandclinic.org/health/diseases/24496-diaphoresis
I'm a man and now I completely understand what it is like to be "hormonal."
Prednisone has a profound effect on endocrine system that shouldn't be underestimated. I think anyone treated with "long term" Prednisone should be referred to an endocrinologist. I didn't learn about all the hormone imbalances I had from Prednisone until I was referred to an endocrinologist.

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Thank you so much for your reply. I have been hit with three really weird diagnoses in the last year and now this unusual sweating. I was wondering what crazy off the wall thing I have now. When my husband experienced this same symptom years ago it turned out to be leukemia. I think I can safely say this is caused by prednisone. I wish you all the best in any/all health issues you may be having. Also, my sweating is not night sweats either. They are during the day and can come when I am doing nothing but sitting.

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I was finally diagnosed with PMR June of this year and started on 20 mg. I started sweating profusely when out for walks or working in the yard. I seemed to dehydrate quickly and often felt light headed and had to push fluids and at times use electrolytes. I am now on 12.5 mg. It's been up and down with the tapering. I was down to 10 mg twice but both times going to 7.5mg brought about a relapse. So I now know that next time I hit 10 mg. I'll stay on longer and then just go down 1mg at a time and hope that fixes the problem. The sweating is better now, still occasionally at night and it seems that late afternoon to evening I am prone to "hot fluhes". I have learned so much from this forum and am so grateful for it.

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@jj8431

Wow, that is my exact beginning story. My PCP started me on 20. I had the breakthrough pain in the middle of the night. My PCP ok'd the split, at my suggestion (because I learned it was an option from this forum:), but my body was telling me also. When I got to the Rheumatologist, a month later , she said she was ok with the split, said whatever works. I can't believe some docs are so rigid in their practice patterns. I would be looking also if my doc wouldn't listen to what I was saying.
I will have to research more on that 10% taper schedule. It makes sense, I know it needs to be done slowly, I know the relationship to the adrenal glands, but I can't imagine being on Prednisone another 10 months, yuk! I know, I know, I can't hurry this but I want to....

Jump to this post

I hate taking Prednisone, too, but aren't we lucky to have something that manages the pain...

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