1. < Polymyalgia Rheumatica (PMR)

How did you cope with the side effects tapering off prednisone?

Posted by abbeyc @abbeyc, Mar 19, 2022

Has anyone experienced issues when they first started to taper? this is day 2 for me (went from 16 mg to 14 mg) and I am experiencing headaches. Wondering if this is normal and if it will improve.

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Marilyn McFarland | @1942marilyne | Jul 8 8:58am
In reply to @mtr2601 "Persistent headaches could point to GCA so talk to your Rheumy ASAP. In previous posts we've..." + (show)
@mtr2601

Persistent headaches could point to GCA so talk to your Rheumy ASAP. In previous posts we've discussed the fact that there appear to 3 types of PMR sufferers. Type A respond well to doses around 20mg and can quickly taper at 2-5mg at a time and get to zero in a few months with good remission rates. Type B need to taper a lot more slowly, 0.5 to 1 mg at a time, over a much longer time frame and often get 'stuck' once they get below 10mg and have flare ups but can get to zero in a year or two. Type C will generally be on Prednisone for many years and are classed as chronic sufferers. The type doesn't appear to relate to severity of disease at onset, its most likely genetics. Strange symptoms can crop up at any time during Prednisone tapering.

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I ended up after 3 years type c. Recently on dexamethasone now on taper from that and change over to low dose prednisone. I am grateful for this website. Not alone anymore always have someone to read

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DadCue | @dadcue | Jul 8 9:20am
In reply to @mtr2601 "Persistent headaches could point to GCA so talk to your Rheumy ASAP. In previous posts we've..." + (show)
@mtr2601

Persistent headaches could point to GCA so talk to your Rheumy ASAP. In previous posts we've discussed the fact that there appear to 3 types of PMR sufferers. Type A respond well to doses around 20mg and can quickly taper at 2-5mg at a time and get to zero in a few months with good remission rates. Type B need to taper a lot more slowly, 0.5 to 1 mg at a time, over a much longer time frame and often get 'stuck' once they get below 10mg and have flare ups but can get to zero in a year or two. Type C will generally be on Prednisone for many years and are classed as chronic sufferers. The type doesn't appear to relate to severity of disease at onset, its most likely genetics. Strange symptoms can crop up at any time during Prednisone tapering.

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I'm reminded of what a doctor told me more than 30 years ago. I was diagnosed with my first autoimmune disorder but not PMR. He said 3 things could happen with almost any autoimmune disorder.

1) It could be a one-time occurrence and it wouldn't happen again. (Type A)

2) It could start to recur and have a recurring pattern. (Type B)

3) It could become chronic and then I would be in a "world of hurt." (Type C)

That was more than 30 years ago when I heard that.

Looking back ... I was Type A for the first 5 years.

When the problem started to recur, I became Type B for about 15 years.

After PMR was diagnosed I was definitely Type C for another 12 years.

I guess I'm still Type C but I'm off prednisone.

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patrish3 | @patrish3 | Jul 11 3:33pm

I, too, have trouble with thin skin and bruises and cuts on my forearms. I have been tapering for quite some time, about 6 months, and am currently moving from 4mg to 3 mg. The bruising and cuts are slightly improved.
I do take large doses of Vitamin C that is proven to help some. I take 2,000 mg every day. Maybe it would be even worse without the vitamin C!

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janetorcas | @janetorcas | Sep 25 8:20pm
In reply to @marda "I've been on Prednisone for almost 3 years and down to 7.5 ml at this point...." + (show)
@marda

I've been on Prednisone for almost 3 years and down to 7.5 ml at this point. My skin is so thin and fragile that any little bump or scratch turns into a bruise and cut. I work in the garden and even wear long sleeves but doesn't seem to help. Does anyone have some special cream they use to thicken skin. I look like I've been beaten up all the time. And when I finally get off this stuff, will the bruising stop.

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I empathize! The backs of my hands and forearms are constantly dotted with ugly bruises. And the thinness of skin means my arms and hands would be good to study for anatomy class - the veins are so prominent and ropey. The slightest bump or minor abrasion is on full display. I have yet to find anything that helps. Tapering and I'm at 8mg. Not improving with the taper.

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delia2250yahoocom | @delia2250yahoocom | Sep 26 10:24am

This has helped with bruising

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marda | @marda | Sep 26 11:22am
In reply to @janetorcas "I empathize! The backs of my hands and forearms are constantly dotted with ugly bruises. And..." + (show)
@janetorcas

I empathize! The backs of my hands and forearms are constantly dotted with ugly bruises. And the thinness of skin means my arms and hands would be good to study for anatomy class - the veins are so prominent and ropey. The slightest bump or minor abrasion is on full display. I have yet to find anything that helps. Tapering and I'm at 8mg. Not improving with the taper.

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I had to be completely off Prednisone before I noticed any changes to the bruising and scars from tears to my skin. The skin on my arms and legs is still thin and the dematologist recommended using Gold Bond Age Renew Retinol Overnight Lotion and it has helped. I was on Predisone for about 5 years. The worse side effect from it was necrosis and I needed to have several Joint replacements (both hips and my right shoulder). It has effected my spine and I have Multilevel degenerative disc disease with compression of the nerve root, Disc bulge on several discs. So I''m still suffering from the drug. Get off it as soon as you can, I feel the doctor put me on way too much prednisone, but they have repeatedly said they didn't want me to go blind. I am very careful about falling. The only thing that has helped with the back pain is water aroebics, Get off of it ASAP.

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1 reply
DadCue | @dadcue | Sep 26 4:21pm
In reply to @marda "I had to be completely off Prednisone before I noticed any changes to the bruising and..." + (show)
@marda

I had to be completely off Prednisone before I noticed any changes to the bruising and scars from tears to my skin. The skin on my arms and legs is still thin and the dematologist recommended using Gold Bond Age Renew Retinol Overnight Lotion and it has helped. I was on Predisone for about 5 years. The worse side effect from it was necrosis and I needed to have several Joint replacements (both hips and my right shoulder). It has effected my spine and I have Multilevel degenerative disc disease with compression of the nerve root, Disc bulge on several discs. So I''m still suffering from the drug. Get off it as soon as you can, I feel the doctor put me on way too much prednisone, but they have repeatedly said they didn't want me to go blind. I am very careful about falling. The only thing that has helped with the back pain is water aroebics, Get off of it ASAP.

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Your story reminds me of a GCA patient I took care of in the hospital. She had steroid induced psychosis and wouldn't take her prednisone. She would hit people who got anywhere near her with her prednisone dose. I informed her doctors that she wouldn't take her Prednisone so they told me to tell her that she would go blind if she didn't take her Prednisone dose.

If telling her she would go blind didn't work, I was supposed to restrain her and put an IV in to give a steroid dose to her that way. I didn't think I could get an IV in her since her skin and veins were so fragile. I was also afraid her bones would break if I tried to restrain her.

Her daughters were at her bedside and said she wasn't ever like this and they said she wouldn't hurt anyone. She was so frail she wouldn't have hurt me if she did hit me.

The patient went a couple of days without any Prednisone and her psychosis cleared up. She agreed to take a smaller dose of Prednisone. She didn't go blind. I told her doctors that she knew she couldn't take as much prednisone as they wanted her to take!

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