Tapering and Dealing with a Flareup

Posted by susanew @susanew, May 30 11:55am

I have been trying to taper down my steroid use first from 8 mg to 2 mg methylprednisolone, which I have successfully done. But the hardest hurdle now is from 2 mg to 1 mg. I think, fingers crossed 🤞 that I may have found some help in reaching this goal. On top of PMR, I also have osteoporosis with a small fracture (probably from a bad fall) in my L1 spine. What has really helped me recently with the PMR tapering pain is using a memory foam cushion I had previously used in the past to sit on, but now am using it as a back support with an added pillow when sitting for long periods. For some reason, this seems to put less pressure on my thighs, groin, legs, lower back, neck. So far I have been on the 1 mg for a few days now and am doing fairly well with much less pain. It’s just a thought that maybe this might help you too when tapering.

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

good job. Keep trying to figure it out. Methylprednisolone is same as prednisone. It is 5 times stronger than cortisol and prednisone is 4 times stronger. MP is also injectable. Do what you can to get off. It will make life really difficult at first.

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I have tapered down to 0 due to problems with too much Methylprednisolone in my system. My skin has become so dry and itchy, especially on my arms and now I have a purplish bruise on one very dry area on my arm. Also my ocular pressure is higher than I had before and my eyes are very dry. After stopping the methylprednisolone, I am back to some stiffness and very achy. I did stop after down to 1 mg daily. I tried an arthritis strength tylenol which seems to be working somewhat.
Here are my questions:
1. What to do when too much steroids are causing systemic reactions?
2. After tapering off, and later on a new flareup begins, what do you do then? How much steroids do you use … lowest amount possible?
3. What can be used other than prednisone or prednisolone?

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@susanew

I have tapered down to 0 due to problems with too much Methylprednisolone in my system. My skin has become so dry and itchy, especially on my arms and now I have a purplish bruise on one very dry area on my arm. Also my ocular pressure is higher than I had before and my eyes are very dry. After stopping the methylprednisolone, I am back to some stiffness and very achy. I did stop after down to 1 mg daily. I tried an arthritis strength tylenol which seems to be working somewhat.
Here are my questions:
1. What to do when too much steroids are causing systemic reactions?
2. After tapering off, and later on a new flareup begins, what do you do then? How much steroids do you use … lowest amount possible?
3. What can be used other than prednisone or prednisolone?

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@susanew, You mentioned your ocular pressure is higher than before and your eyes are very dry. I'm wondering if it's a new symptom and may be a symptom of temporal arteritis or GCA. I haven't had any experience with GCA but my doctor and rheumatologist were always watching and discussing the possibility with me and telling me to let them know if I had any new symptoms related to vision, or pain around the jaw, scalp or temple areas. @tsc, @dadcue and others may have some thoughts or suggestions to share with you.

Have you discussed the symptoms with your rheumatologist or doctor?

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@susanew

I have tapered down to 0 due to problems with too much Methylprednisolone in my system. My skin has become so dry and itchy, especially on my arms and now I have a purplish bruise on one very dry area on my arm. Also my ocular pressure is higher than I had before and my eyes are very dry. After stopping the methylprednisolone, I am back to some stiffness and very achy. I did stop after down to 1 mg daily. I tried an arthritis strength tylenol which seems to be working somewhat.
Here are my questions:
1. What to do when too much steroids are causing systemic reactions?
2. After tapering off, and later on a new flareup begins, what do you do then? How much steroids do you use … lowest amount possible?
3. What can be used other than prednisone or prednisolone?

Jump to this post

I did. I have had similar eye reactions in the past due to a blood pressure medication and a stomach acid reducer. Both caused a type of conjunctivitis. The skin reaction I have also had before when being on Ibuprofen too long. I just had an ophthalmology exam and was told everything looked fine except my ocular pressure was higher than usual and probably attributable to the steroids known to cause this in some.

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@susanew

I have tapered down to 0 due to problems with too much Methylprednisolone in my system. My skin has become so dry and itchy, especially on my arms and now I have a purplish bruise on one very dry area on my arm. Also my ocular pressure is higher than I had before and my eyes are very dry. After stopping the methylprednisolone, I am back to some stiffness and very achy. I did stop after down to 1 mg daily. I tried an arthritis strength tylenol which seems to be working somewhat.
Here are my questions:
1. What to do when too much steroids are causing systemic reactions?
2. After tapering off, and later on a new flareup begins, what do you do then? How much steroids do you use … lowest amount possible?
3. What can be used other than prednisone or prednisolone?

Jump to this post

My wife has uveitis. This created glaucoma. I know dadcue on this site suffers from inflammation related to uveitis. I am sure my wife has gotten worse since being on steroids. She is on steroids for a brain tumor. We have just treated the uveitis with drops. But the pressure can be very concerning. It can cause blindness. The dry purplish marks on your arms are from the steroids. Dr recommended a skin cream but said until your off steroids it will be of little help. The steroids are causing all kinds of reactions. I was only on 6 months and my BP had gone up, My cholesterol was up, and my A1C was up. I went off 2 years ago and all have gotten better. My A1C is still a little elevated. But I now take a BP and Cholesterol medication. As far as where to go from here. I have the same interest. PMR is considered a self limiting disease. I thought maybe it would burn itself out. I have had 3 flares. Just finished one. My thought for a starting point was the standard medical dosage of 15mg. I upped it to 20mg. I did that for 1 day. 2nd and 3 rd day I did 15mg and 10mg . fourth and fifth day I did 5mg. Then stopped. The first two flares were gone. This last one doesnt feel gone but I can deal with it. I too am interested if something works for others. My thought was not to stay on prednisone but merely treat the flare with a short burst. As to your last question. It was suggested that I may need to go on a PMR drug full time. Like Acterma or Kevzara. These drugs are designed to attack PMR inflammation and they are not a steroid.

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@susanew

I have tapered down to 0 due to problems with too much Methylprednisolone in my system. My skin has become so dry and itchy, especially on my arms and now I have a purplish bruise on one very dry area on my arm. Also my ocular pressure is higher than I had before and my eyes are very dry. After stopping the methylprednisolone, I am back to some stiffness and very achy. I did stop after down to 1 mg daily. I tried an arthritis strength tylenol which seems to be working somewhat.
Here are my questions:
1. What to do when too much steroids are causing systemic reactions?
2. After tapering off, and later on a new flareup begins, what do you do then? How much steroids do you use … lowest amount possible?
3. What can be used other than prednisone or prednisolone?

Jump to this post

My husband also has those purplish marks (many) due to meds he takes for asthma and diabetes which are steroids. Your idea about a burst of meds for a PMR flare is a good one. Years before diagnosis, my doctor periodically would prescribe a prednisolone pack … you started high and each day number of pills were reduced. This was a 7 day pack. It used to work great until the flareups came more often. Sent an email to my rheumatologist and will see what he suggests. I tried using Arthritis strength Tylenol which has some effect during tapering but no effect during a flare. Hoping you are right that PMR is self-limiting.

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I am so discouraged! I started at 8 mg Medrol (methylprednisolone) and was encouraged to taper and I got down to 1 mg with a few aches and pains. Aterward, I stopped medicating and within three days had a terrible flare. I went back up to 4 mg and now trying to take 2 mg with some aches. I am not sure how much I am supposed to take with a flare and again how to taper. I did make a doctor appointment to discuss. I just do not get it. Why am I bothering to get down to no medication when my body goes into a terrible flare. I am so discouraged!

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@susanew

I am so discouraged! I started at 8 mg Medrol (methylprednisolone) and was encouraged to taper and I got down to 1 mg with a few aches and pains. Aterward, I stopped medicating and within three days had a terrible flare. I went back up to 4 mg and now trying to take 2 mg with some aches. I am not sure how much I am supposed to take with a flare and again how to taper. I did make a doctor appointment to discuss. I just do not get it. Why am I bothering to get down to no medication when my body goes into a terrible flare. I am so discouraged!

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Tapering is a complex issue. I’ve been down to 8mg of prednisone three times now. Bad flares each time when I dropped from 9 to 8.5 and then to 8.
The taper has to be very slow especially once you get under 10mg of prednisone. As to dealing with the flares. My doc said well just go back up to 8.5mg of prednisone..the last level you felt reasonably well. Nope. Once you flare it often takes going back up a bit to get the inflammation under control. I was at 8mg last week. I am currently at 12mg. But yes talk to your doctor and try not to get discouraged. It just takes awhile.

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@barracudacool

Tapering is a complex issue. I’ve been down to 8mg of prednisone three times now. Bad flares each time when I dropped from 9 to 8.5 and then to 8.
The taper has to be very slow especially once you get under 10mg of prednisone. As to dealing with the flares. My doc said well just go back up to 8.5mg of prednisone..the last level you felt reasonably well. Nope. Once you flare it often takes going back up a bit to get the inflammation under control. I was at 8mg last week. I am currently at 12mg. But yes talk to your doctor and try not to get discouraged. It just takes awhile.

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How long are you staying on each reduction before moving onto the next? And was there some slight increased aches/pains at 8.5mg which may have been a clue to stay on that a bit longer rather than keep reducing? I'm asking because I had my first flare at 6mg, but new (tolerable) aches started at the 6.5mg reduction. That's the point at which I should have gone back to 7 for a bit, rather than optimistically reducing to 6mg.

As I get closer to reducing to that dose this time, I intend to sit on around 7mg/6.5mg for a while longer this time. You're right that once the inflammation settles in, the rise to fix it has to be more. That's no good.

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@susanew

I am so discouraged! I started at 8 mg Medrol (methylprednisolone) and was encouraged to taper and I got down to 1 mg with a few aches and pains. Aterward, I stopped medicating and within three days had a terrible flare. I went back up to 4 mg and now trying to take 2 mg with some aches. I am not sure how much I am supposed to take with a flare and again how to taper. I did make a doctor appointment to discuss. I just do not get it. Why am I bothering to get down to no medication when my body goes into a terrible flare. I am so discouraged!

Jump to this post

You are so right. I had to go up a level to feel some relief. Not total, but some. Have now reduced back to a level (2 mg) where there had been no pain before flare. Now there still is some stiffness but tolerable.

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