Not feeling good after prednisone reduction - PMRGCAuk

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Not feeling good after prednisone reduction

Athena2020 profile image
17 Replies

Can tapering prednisone slowly such as last month i went from 12.5mg in October to 10 mg in November after that I started feeling malaise, achy, and fatigue, as well as my white blood cell count went up such as my Lymphocytes up to 5 . Has anyone experienced anything like this.

Thank you

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Athena2020 profile image
Athena2020
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17 Replies
SheffieldJane profile image
SheffieldJane

It sounds as if your body is not happy with your latest reduction. You did it nice and slowly, so it must be the amount. Try going back up to the last dose you were comfortable at and see if it all settles. If not you could try going up by 5 mgs for a week/ ten days and then returning straight down to your previous dose. This can sometimes halt a flare in its tracks. Ensure that you are fairly symptom free before you try to reduce again, then take the same few weeks to reach 11.5mg by a 1 mg drop using the dead slow almost stop method pinned on the site.

Athena2020 profile image
Athena2020 in reply toSheffieldJane

I will look into doing that . Thank you for your quick response.

SheffieldJane profile image
SheffieldJane in reply toAthena2020

👋 insomnia. Good luck!

Kendrew profile image
Kendrew in reply toSheffieldJane

Haha!......Ditto!!🥺

piglette profile image
piglette

I personally was unable to drop as much as 2.5mg at any one time. I found 1mg drop per month when I was over 10mg a day and then a reduction of 0.5mg when I got to 10mg. Some people are a lot tougher than I am though! As SheffiedJane suggests go back to the point you felt comfortable, make sure you feel OK and reduce again, but possibly slower this time.

123mossie profile image
123mossie

Another insomniac. I agree with piglette, 2.5 would have been too much for me, I did 1mgm reduction down to 10mgm, then 0.5 very slowly to get further down. Plenty of time in the grand scheme of things!

Kendrew profile image
Kendrew in reply to123mossie

Hi again!Must stop meeting like this!!😄😄

Kendrew profile image
Kendrew

Like 123Mossie, I dropped from 12.5mg to 10mg and appeared to be ok initially, but developed muscle and joint pains which I initially interpreted as withdrawal symptoms. They weren't!!....... and over time got slowly and gradually worse until it was obvious it was a flare. Set me back a long way, so try and really listen to your body and don't wait too long to take action. Good advice from piglette and SheffieldJane.

SnazzyD profile image
SnazzyD

2.5gm drop fro 12.5mg would have been too big a drop for me in terms of withdrawal;1mg is kinder. Your lymphocytes going up might have been you have been been ill of course. A raised Neutrophil count on Pred is normal.

Athena2020 profile image
Athena2020 in reply toSnazzyD

I am thinking that was a big drop too. I don't understand why my Dr. suggested that

SnazzyD profile image
SnazzyD in reply toAthena2020

Because they don’t live through it and are often focused purely on the negative aspects of Pred, forgetting the reason why it was prescribed in the first place. Well, that’s my jaundiced view.

Athena2020 profile image
Athena2020 in reply toSnazzyD

you are right

PMRpro profile image
PMRproAmbassador

I don't consider going from 12.5 to 10mg in a month particularly slow!!! It is advised that any reduction step should not be more than 10% of the current dose - and that is 20%! Don't care what doctors think - some people simply can't cope with that sort of size of drop plus if the dose you need at the time is 11mg you've overshot and missed it. It is much easier to reduce 1mg at a time than to sort things out after a flare - and you probably accrue less pred too.

PS - I'm probably even more jaundiced and cynical than Snazzy!

Athena2020 profile image
Athena2020 in reply toPMRpro

I do agree totally, I just followed the Doctors directions. Unfortunately it backfired. I wonder if there is a medication that helps with prednisone reduction.

PMRpro profile image
PMRproAmbassador in reply toAthena2020

It is said that some do, such as methotrexate and leflunomide - other immunosuppressant drugs adding their own layers of adverse effects and which are not guaranteed to work although they DO work for some and they are both discussed extensively on the forum. Tocilizumab does in GCA, getting half of patients off pred altogether in 6-12 months and allowing the rest to reduce their pred dose considerably. Whether the same results are found in PMR is unknown since no full scale clinical trials have been done. It also had adverse effects and is a heavy duty biologic drug - not to mention very expensive .

But above all, listening to your body and tapering in much smaller steps allows dose reduction to be less traumatic - and there are no serious side effects!

Athena2020 profile image
Athena2020 in reply toPMRpro

You are so right the best thing is to listen to your own body. Thank you so much for all your input it is very helpful.

Cyclo5 profile image
Cyclo5 in reply toPMRpro

I'm back again. I've reached 2mg/day and this feels like the limit. Pain is minimal but stiffness in an arthritic way, like my mother used to experience in her late 70s, for example when bending down to a plug or reaching up to the top cupboards, has returned. Though stiffness never completely went away on higher doses for me.

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