Switching from methprednisolone to prednisone and back within 3 weeks?

[Kenneth77]

I feel like i'm dying. Had PMR for 15 mos. and since my rhuemy didn't know how to lower 4mg of prednisolone she switched me to prednisone. I can barely walk around the house and I'm dizzy as can be. My GP switched me back to 6mg methyl..Any feedback would be greatly appreciated!!

[Alness]

Very worrying when ur own doc doesnt know how to taper steroids. Surely she or he knows there are 1mg tablets and u could even do half although they sre hard to cut as so sml. Hope u pick up and get help from someone competent who knows what they are doing. Good luvk c

[SheffieldJane]

Had you got yourself down to 4 mgs? I am not sure that I understand why the switch was made and golly it didn’t suit you. What has been your prescribed journey with Pred. So far. A bit of background will help people to comment constructively. ( you won’t die x).

[nickm001]

Since you seem to have a flare, it may help to add 3-5mg to your old dose for several days to clear inflammation and then go back to 4mg . I would stay on that does until you feel comfortable and then try to reduce by 0.5mg ( 4 -> 3.5) using DSNS method (slow taper).

[PMRpro Ambassador]

I don't understand either I'm afraid.

What were you on and when? Had you been on methyl pred before at all? Personally I detested methyl prednisolone, I didn't feel right on it from day one and had some wonderful side effects - especially the black beard!

Prednisone and prednisolone are identical in dose equivalents - and both are available in 1mg tablets so how reduction can be a problem I don't know. And it is a RHEUMY who doesn't know how to do it? You are on a slightly higher equivalent dose of methy pred - maybe you are adjusting to that too?

[Kenneth77]

So sorry I wasn't more specific. I never dreamed I'd get feed back at all never mind so fast.Thank you all you beautiful people who post on here regularly. I've been following since May 2017 and read everything.

In April 2017 I had the typical attack of sudden symptoms of PMR. Age 71. Couldn't

get out of bed, stairs on my butt, walking in the house holding on to walls, etc. Sed rate: Normal CRP: 96.9 !!!

all else was normal. My GP of 30 years immediately suspected what it was.

Started me on 40mg of prednisone with a taper schedule. He got me to the front of the line to see a rheumy who immediately changed my med to 20mg of methylpred. with a taper. After a year, my bloods were normal so she thought I was completely cured.

Here in NH, USA methyl is not available in dose less than 4mg per tablet.

It took me a year to reduce to 2mg. A 4mg tab can only be broken in half

so thats the reason she switched me to plain pred to continue tapering cause they come in 1mg. Now I realize I can crush a 4mg in a mortar and pestle and divide the powder into 4 lines.

That's when all heck broke loose. My GP thought I should go to 10mg of pred. and reduce from there since I was exhibiting so much inflammation.

After a couple of weeks of that, with extreme weakness, I picked up my remaining RX for 4mg of prednisolone and have been on 8 mg for the last few weeks. GP prescribed it and said to reduce as I see fit. Mg for mg they might be close

in strength but in reality, they have totally different effects.

I know everyone is different, but for me, methylprednisolone is a much smoother ride. Since my bloods were normalized, she thought she completely cured me.

So the pains in my shoulders have gone into remission but...my legs and lower back are so weak I can barely cook supper. I'm dizzy as can be when walking or standing.

Is this to be expected 15 months in??

[PMRpro Ambassador in reply to Kenneth77]

Come, come - if you are a regular reader you MUST have know SOMEONE would reply!!!!

PMR lasts more than 15 months for most patients - men DO tend to be different for some reason but still, 15 months is very early. The median duration of steroid treatment is 5.9 years. Fewer than 20% of patients are off under 2 years.

Having normal blood markers while still on pred is a long way from the PMR having been cured. Honestly - you really would expect a rheumatologist would understand how it works! While the steroid (whichever it is) is controlling the inflammation there is no stimulus for the liver to produce the proteins it normally would in response to inflammation - which is what raises the ESR and CRP readings. Arrogance - she didn't cure your PMR, PMR cures itself in its own good time. But if pred worked - albeit at a high dose - why didn't the rheumy just reduce the dose fairly quickly to a more sensible dose?

Your GP is correct in terms of there being indications of inflammation being present meaning you need more steroid. It shouldn't matter WHICH steroid - but obviously for you it does.

I really don't know what to suggest - except why not ask to go back to methyl pred and see if that deals with the current problems? If it doesn't - rethink required.

And try this reduction plan which DOES usually work with slightly larger reductions:

healthunlocked.com/pmrgcauk...

The easy way is to take a calendar, use the 1st of the month for day 1, mark it up to take the new dose. For the next 5 days mark it to take the old dose. One day new, 4 days old, one day new, 3 days old... And so on. You can stop anywhere and mark time. Or go back.

You challenge your body with the new dose but then comfort it with a few days of the old dose.

If you want to try it with less than 2mg - it is possible to cut the 1/2s into 1/4s with a bit of practice. It doesn't matter how accurate it is - it is still less than the whole 2mg piece.

If it works - great. If it doesn't - rethink.

[Kenneth77]

PMR PRO....

I understand everything you just said. My GP is a jewel of experience immersed in a sea of antiquated text book disinformation, propagated by rheumys all around him. They don't know each other at all. And with such a wonderful GP I have no desire to go back to the rheumy again.

I have been back on methyl for at least 2 weeks and feel much better. My GP will let me stay on it as long as I want as he knows I'm not taking it for the fun of it. Just don't know what is going on with this dizziness. All else is as it should be. Can pred or methylpred be suspect? Normal cat scans with contrast, and all bloods normal... Just got dizzy when PMR struck me down. May 9, 2017

[PMRpro Ambassador]

I like the sound of your GP!

It occurs to me - maybe your adrenal function hasn't kept up with the messing about? Has your BP been checked? Especially when you get dizzy. I have had episodes of my BP just plummeting for no apparent reason, dizzy spell, gone in half a minute or so. It is very disconcerting to say the least!

Or am I misunderstanding - has the dizziness been around for 15 months? Is it all the time? Just occasionally? Do you have a back muscle problem?

[Kenneth77 in reply to PMRpro]

Yes, I do have a lower back muscle problem, but it never bothered me until I collapsed on the floor and couldn't walk for a few weeks. I went through all of the problems talked about on this site: Not being able to navigate my stairs, except on my butt, not able to get on or off the toilet, dizziness, CRP was 94 and sed rate high.

After 18 months of Methylprednisolone starting at 24mg, I am down to 2 mg.

My upper body smoothed out and all I'm left with is the crunchies, not painful, but collarbone and related tendons crunch upon movement.

The lower half of my body is extremely weak. Jitters in my knees, dizzy when I walk,

my gait is horrifying-I am only 72 but since pmr I feel like 100. Chiro helps but can only afford him once a week. Yoga helps. Sorry I took so long to reply to you. Going to try and fix the leak in my jacuzzi this week.