I’ve been on the increased (15mg) dose of prednisone for ten days now and even though gluteal/thigh pain isn’t totally controlled, I agree with PRMPRO’s thought that using pt for residual pain may be the best approach. My understanding is that instead of the slow taper, I should drop straight back down to the last dose where I was reasonably comfortable. That would be 10. Does that seem like too precipitous a drop?
I also have a totally unrelated question about timing of prednisone dose. I take thyroid medication for Grave’s Disease and that is taken before breakfast. I like to separate thyroid med from prednisone and since I am a night owl (bad habit) that means I sometimes don’t take my prednisone until noon or later. Is this less than optimal timing?
Thanks!
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Donna5658
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you can drop down in 2 stages - 15-12.5mg for a week, and providing that is okay then 12.5-10mg. But stay there for at least a month before you restart tapering proper. …
As for timings, the issue with taking Pred as you do, it’s likely to make your mornings more difficult - does it?
As you are a night owl, could you take either your thyroid meds or your Pred in the evening - or is that not feasible?
Theoretically you can just drop back. It may be more comfortable in a couple of steps a few days apart.
Does taking the pred when you do work for you? It will do for anyone whose antiinflammatory effect lasts the full 24 hours. The other factor is that the later in the day you take the pred, the more will be left in the system at night when you go to bed - and it may disturb your sleep. Studies have found that thyroid meds taken at night may improve control.
Thanks PMRpro. I’m not sure if taking prednisone the way I do works for me, as I haven’t tried it any other way and I am having a resurgence of gluteal pain. It doesn’t work well for me to take either my desiccated (Armour) thyroid or the prednisone at night as my sleep is then disrupted.
Sorry Donna, I was on Prednisone for a little while (a week,) tapering took while. I had been misdiagnosis. It about four to five years ago. Hope you feel well soon!
Dear Donna, I can tell you only what worked for me. If I have a flare while on regular 5mg. for LONG periods I would go on what my Rheumy called a "Packet" It went like this... 1st day increase to 24mg. than 20-16-12--8-4 all laid out in the packet by day., then directly back to 5mg. Of course I was tested for Sed Rate (inflammation level)before starting Packet. This worked well for me to ease out of a flare. I would b e interested to know if anyone has used this Packet method? I am in the US. I am unable at 83 with some other conditions, to go below 5mg because it has ben determined I cannot because of so so many years on Predisone. Well over 10 though we hear PMR can go away??? It is not adivsed that I try going below 5 after repeated failures however slow.
It is some comfort to know that 5mg. is not signifacant damage to the body though we all know how much we would like to be prednisone FREE. And it can be hard to accept that may not be the goal. Rather it is to take the very best care of ourselves and be blessed to be pain free but for infrequent flares. I wish you well in all things. Sandydame
In early 2021 I had the not so delightful experience of a major flare which was caused by an increase in disease activity, not as is more usual simply a too fast taper, or a bit of increase because of some transient experience (travel, more stress, something like that). Took me a while to accept this although I should have, and in the end it took me about 18 months to get back to my previous low dose, although I was able to taper down quite rapidly from 10 to about 6 - but I'd been around 2 for a very long time before. Just mentioning this in case you find you have a lot of trouble dropping back down - expecially as it appears your symptoms have not entirely resolved with your current increase. Hopefully it won't be a problem for you, but just be aware. Better to stay higher for a little longer than get into a yo-yo pattern. By the way, it was a few months into this adventure that I shifted my pred dose to 2 am and have actually found it to be more effective. I have everything ready, the pred, a few spoonsful of yoghurt and some water, and have not usually had trouble getting back to sleep. Have recently started a tentative taper to 1.5, so all is not lost. But sometimes Things Take Time. (Grook by Piet Hein)
Thanks for describing your experience. So where were you when you had the flare and how high did you have to go? Did you go from 2 to 10 during that time? Did you have complete relief at 10? Did you have CRP and Sed rates done at that time and if so, were they elevated?
I don't think I was quite at 2 when I gave in and admitted I was having a flare, but I had been at that dose, or maybe 2.5, since mid-2020 after I'd had a brief (about six weeks) flirtation at zero. Several months later I got painful shoulders which for a long time I blamed on osteoarthritis, but one day I realized I was actually feeling very much like I had with undiagnosed PMR several years earlier. So I took 10 mg, fairly early in 2021, diary not in front of me, and it did help quickly. But I've always been quite responsive to pred, I think I must be one of the lucky ones who metabolizes it quite fully, and I was able to taper down to 7 and then 6 quite quickly, but stuck there. Bloodwork at the time showed CRP level higher than it had ever been, but it had been creeping up before that. A year later CRP was lower than it had ever been and I was at that time tapering down to 2. No tests for some months now, but feeling pretty good. Elsewhere I've posted that I think my Shingrix vaccinations, and later a Moderna booster (after being triple-Pfizered with no effects), shocked my immune system into behaving itself!
I started out with 25mg and started reducing, 2mg a week, until I hit 14 mg, there I had my first flare up. I went back to 20mg for a month. Then started back down, 1mg a month until my second flare at 7mg. I rolled up to 10mg for a month then started back down at 1mg a month. 18 months after it all started I hit 0. I have now been off prednisone for 12 months. My rheumatologist believes in “less is best”. She tells me to manage my pain with Tylenol and only go back to prednisone if the Tylenol will not cover the pain. She also tells me to categorize my pain three ways 1. Is it a PMR flareup, 2. Just normal old guy pain (I’m 73). 3. Did I over do it.
I am very lucky to have a fantastic rheumatologist. She said that stress and diet can cause a flare so, managing both can help with controlling PMR. I’m also a type 2 diabetic so, I watch what I eat.
Sorry for rambling, hope this helps. I would be interested to know if anyone else has had luck with change in diet.
Thanks for the reply! Sounds like your strategy has worked well for you. I know a healthy diet seems to work best for me and my autoimmune co-morbidities (MS, Grave’s Disease and PMR). Low carb, including no added sugar, low saturated fat, wild salmon and other oily fish, lots of olive oil, vegetables, a modest amount of fruit (although I do eat a half a cup of blueberries every day). Basically a Mediterranean, anti inflammatory diet. It has stood me in good stead for over forty years of ms.
Congratulations on being off of all prednisone. Some of us can only aspire
hi Donna, having had 2 major flairs during my prednisone taper over 2 years i would recommend consider a slower approach. Rapid down step recharged the TA effects and the flair came right back. I agree with Dorset LAdy approach. Take Care it gets better.
Thanks for your reply. Do you mean you went up by 5 mg and then started back down with usual taper speed? My doctor seemed to think I could go from 15 to 12.5 in one step, stay there for two weeks, drop down to 10 if no symptoms and then resume slow taper from there. 1 mg per 5 weeks from 10.
Thanks DL. You have answered this question for me at least three times I was just trying to clarify Carver63’s approach. It sounded like she was recommending against rapid down steps after flare. I am at 12.5 (from 15) and so far so good.
Dropping the 5mg at a time works for most people. and you are back almost where you were very quickly without disturbing the taper much. Others find dropping back 2.5mg at a time easier, some do it a couple of days apart, others leave longer between. To be honest, I suspect leaving longer between the drops may well be harder as the body has had time to get used to the dose.
Does that apply if one has gone up 5mg for more than a week? I was on 15 for 11 days. Now I’ve gone down to 12.5 for 4 days. Would a continuing drop (starting today) back to 10 where I was for a month be reasonable?
hi Donna initially up 20mg from 10 to 30 after flair then down 2.5 mg per month. 2 nd flair was at 15mg went to 20mg and then down 2,5 till 10mg then -1 mg / month till 0 no issues since and i have been off pred and Actemra injections since April /22. Note after the flare Actemra was prescribed to control the reduction plan. been feeling better every day with occasional slight head aches. - 33 lbs too!
Carver 63. Your experience really gives me hope about getting off steroids. Started at 40 mgs pred at diagnosis, down to 30 up to 50 down to 40 . then 32 mgs mydrol, 28 mydrol, 24 mydrol and now 20 mydrol. No pain symptoms. Pray I can get to a level where I am not shaking, panting and tired.
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