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

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

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.

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!

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.

This has helped with bruising

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.

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!

I’m just going to hop in here because I’m having a horrible time and I don’t know really what the cause is. I don’t have PMR. I’ve been put on Prednisone for multiple other things, asthma flares, chronic sinusitis, bronchitis, always given bursts with each time being more difficult to come off of over this past year. Then the last time in November was so severe I felt like I belonged in the hospital. I was weaned from 5 to 2.5 over a 14 day period then told to stop for 2 days and have an AM fasting cortisol level and ACTH level drawn and if they were “normal” I could stay off of the prednisone. They came back normal but by the 4th day of no prednisone I was so miserable I went back to the 5mg and called the endocrinologist. She said to stay on the 5 for a few days then start a tapper of 1 mg per month so yesterday was the first day of the 4 milligrams. Today I am totally miserable after the second day at the dose of 4 mg, I feel like I haven’t had any prednisone. I noticed the bottle said a different manufacturer so I called the pharmacist and asked could I get the 1 mg pills from the same manufacturer as I had the 5 mg from and found out they don’t make 1 mg tabs. So she said she’ll replace the ones I have now for the only other manufacturer they have available so I said okay and I’m supposed to try those tomorrow. Has anyone else experienced a problem when changing manufacturers? I have no idea if that’s my problem or if it’s the 1 mg drop. Now I’m concerned about trying yet a third manufacturer in a 4 day period. I don’t know whether to take another 1 mg pill of this and see if that helps or ride it out and try the new pills tomorrow morning from the other manufacturer, or go back to my original 5 mg pills I already had that worked for me. The problem if I do that then is I can’t wean slowly since 5 mg is the lowest they make and the dropping from 5 mg to 2.5 definitely did not work. Anyone have any suggestions? Thanks!

Have you checked the full ingredients list for each brand to see if there is any difference? That might tell you if it's the different brands causing the problem or something else. You don't say what you mean by "miserable", so it's hard to guess at what might be going on. Whatever is causing the problem, another talk to your doctor seems needed.

Thanks for your reply. No, I have not checked to see what ingredients are in both but that’s an excellent idea.
I’m dizzy, cold clammy sweats, shaky, headache, nauseous, fatigued, and achy ( like flu achy.) So I don’t know if it’s from the change in manufacture or the drop in dosage. I didn’t think a 1 mg drop would produce such profound symptoms.