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Prednisone tapering and extreme sweating

Polymyalgia Rheumatica (PMR) | Last Active: Oct 31 5:38pm | Replies (19)

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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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Replies to "I have extreme, unbearable sweating with activity, not related to tapering. I have been on Prednisone..."

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?

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.

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.