How long for increased steroids to work? - PMRGCAuk

PMRGCAuk

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How long for increased steroids to work?

Seraphina56 profile image
8 Replies

Hi. I tapered from 10 to 9 of Pred over a month and seemed to have all the stepmoms of a flare. Desperately tired and weak with aching across my hips. And shoulders. Talked to GP who did bloods and my ESR was 2! We decided to put the Pred up to 14mg anyway. Six days later it hasn’t made any difference at all. Is it normal for it to take this long? Feeling really low and need a bit of advice.

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Seraphina56
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8 Replies
PMRpro profile image
PMRproAmbassador

Can you describe the symptoms you have? Is it possible it is piriformis syndrome and/or myofascial pain syndrome? Both are often found alongside PMR.

Seraphina56 profile image
Seraphina56

I don’t think it’s those things as the predominant symptoms are tiredness and stiffness rather than pain, like really bad flu. Very like when first diagnosed. The pain is not all that bad. Walking very slowly and weakly. Diabetes, thyroid and anaemia tests were all negative.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSeraphina56

Sounds more like aflare then. If 14mg hasn't worked after 6 days, then you probably need to go higher. Maybe try 17.5mg for 3-4 days - after discussing with GP if need be.

Hopefully that will be enough to stop flare, then you can drop back down to 12mg or 11mg. I would go down to 10mg as they have just been the tipping point. From then either 1mg every 2 months, or 1/2mg per month tapers.

N.B Blood markers often lag behind symptoms, so go by the latter every time.

Barnaby2 profile image
Barnaby2

I have just been going through something similar. I was asked to taper from 10mg to 9mg and all my symptoms returned-a very sore hip on left side and extreme shoulder pain also on left side. I was also very fatigued which is not like me. GP spoke to a rheumatologist who suggested I have a steroid injection and stop the pred tablets which I did last Friday. I also had another blood test and was told to wait for another phone call from GP next week. Meanwhile the fatigue has improved but I still have hip pain and shoulder pain (though maybe slightly less). The nurse said the injection would last weeks and the GP said that the rheumatologist would want to see what I was like without meds so I am presuming symptoms might get worse when injection wears off. Are you getting phone calls from your GP?

PMRpro profile image
PMRproAmbassador in reply toBarnaby2

How long have you been on pred?

Barnaby2 profile image
Barnaby2 in reply toPMRpro

since just after Christmas. I started on 20mg

Seraphina56 profile image
Seraphina56 in reply toPMRpro

Sorry. I replied to this but just realised it want addressed to me.

Seraphina56 profile image
Seraphina56

For two and a half years. I spoke to a different GP today who advised increasing the pred by one mg. So up to 15 and repeat ESR tomorrow. Not sure what an increase of 1mg will do but did it anyway. Thought best not to take more till after blood test. Apparent on diagnosis it was 36. Last week was 2. Still feel ghastly. Thank you for trying to help.

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