Prednisolone not effective: Hi Everyone, This is... - PMRGCAuk

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Prednisolone not effective

Sundance17 profile image
17 Replies

Hi Everyone,

This is my first post and I should be grateful for your advice. I am a 78 male and started my first course of steroids a week ago for PMR. I had understood that the steroid therapy works quite quickly in a couple of days but,so far, I feel no benefit and arms and shoulders remain resolutely stiff.

Has anyone else experienced little improvement with their starting dose? Or am I just being impatient and need to give more time?

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Sundance17
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17 Replies
SnazzyD profile image
SnazzyD

Not everyone gets the miracle instant relief. However, any more detail in replies depends on more detail from you. Can you add to your bio information about your diagnosis, what led up to it, how it was diagnosed, what was tried first, what Pred dose you started on, what sort of activity you do and age. It really helps to give more reply than, it depends.

Sundance17 profile image
Sundance17 in reply toSnazzyD

I started with very stiff shoulders in late October and finally met a Consultant in January who seemed pretty convinced about PMR. I have started on 15mg daily of gastro resistant preds. I am otherwise a reasonably fit retiree who spends time watching grandsons at all sports. Also enjoy visits to theatre and National trust......nothing too exhausting. Thank you for contacting me.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

hi and welcome,

Probably impatience, but as stated not everyone gets the miraculous result some doctor imply… and for a variety of reasons -

Dose not enough, not on it long enough to work, patient not realising they need to adjust their activities.. as stated in this link - it’s not a matter of take the pills and carry in regardless -

healthunlocked.com/pmrgcauk...

There is a lot of info included in link, but please read it through, and squirrel it away somewhere for future reference - it tells you a lot that the doctors don’t about how to successfully manage your disease.

.. and give the Pred a bit more time… 😊

Sundance17 profile image
Sundance17 in reply toDorsetLady

Thank you so much. I will read and retain!

PMRpro profile image
PMRproAmbassador

Hi and welcome!

15mg is towards the bottom end of the starting dose range recommended in guidelines - the lowest effective dose in the range 12.5 to 25mg/day. The effect tends to vary for various reasons, including but not only body size. One study said that a starting dose of 12.5mg achieved a good results in a month for 75% of patients - and I suspect this may have influenced the relatively low starting doses they seem so keen on. The results were better in smaller women and less good in larger men. So yes - you may just be being impatient but the doctors always seem to indicate it will all be a thing of the past in a few days. And it really ISN'T always like that.

It is possible you just need longer - or you may need more pred, at least 20 and possibly 25mg. And there is the possibility that it is a polymyalgic onset of an inflammatory arthritis. Even rheumatologists can be confused there as studies have shown that often there is absolutely nothing to distinguish one from the other.

Sundance17 profile image
Sundance17 in reply toPMRpro

Thank you for your fulsome and very helpful insights. I will cultivate patience for a while longer.

Groggrim profile image
Groggrim in reply toSundance17

Hello, welcome. I was started on 15mg and the relief was instant, hence a diagnosis of PMR. However it didn't last and the GP decided it couldn't be PMR after all and said I had to get off pred as soon as possible. That was last August and I am still reducing and having occasional flare ups. I don't think the average GP knows a lot about the condition. I saw my husband's rheumatologist privately and she suspected a degree of PMR and said the treatment was correct.

If I stay at the 6mg dose that gives relief I do ok but if I drop by even half a mg the symptoms come back. I now have a clued up young GP who has her head screwed on right and I am doing better.

There are very knowledgeable and experienced members here, ask anything, however small. They will always try to help.

Sundance17 profile image
Sundance17 in reply toGroggrim

Thanks for your help. How I envy the speed with which you responded to the treatment - something I was led to believe would be likely in my case. I am already finding this site very supportive.

Oh-my profile image
Oh-my

I didn’t get a miraculous improvement. It was slow and steady over a couple of weeks. I was probably on too low a dose initially but as everything was improving I kept going. After a couple of weeks the stiffness had gone, I could move freely again, but it was replaced with pain. At that point I increased my dose. I was very envious of all those who had instant relief but we are all different. Hopefully with a bit more time it will work for you.

Sundance17 profile image
Sundance17 in reply toOh-my

Thank you so much. I will continue for a while longer and hope that some relief comes.

Sorolla profile image
Sorolla

Hello Sundance 17. I am the same age as you and also with PMR. After struggling to diagnose what was wrong with me I was prescribed 10mg a day of prednisolone, as much a diagnostic strategy as an attempt at a fix. I was lucky - within hours of taking my first dose I felt vastly better and my doctor exclaimed ‘You have PMR!’ I am now hesitantly tapering. I don’t know how usual or otherwise my experience was, but I do wonder if the diagnosis of PMR was correct or if the starting dose was sufficiently high. Since you have just begun this unwanted journey, no doubt your doctor will increase your dose or reconsider his diagnosis. I have a sense that this process is as iterative for the doctor as it is for you. I wish you speedy relief.

PMRpro profile image
PMRproAmbassador in reply toSorolla

You were lucky that 10mg worked - would the GP have said it wasn't PMR if it hadn't? It is a VERY low starting dose.

Sorolla profile image
Sorolla in reply toPMRpro

Thank you and yes I think I was indeed lucky. The highly regarded rheumatologist had already utterly misdiagnosed what was happening and I was referred to the consultant who prescribed the prednisone only because of an iron anomaly in my blood analysis. He was looking at things from a different angle and working his way through a ghastly list of possibilities. I think as much as I relief for him as for me that the prednisolone worked. If it hadn’t he would doubtless have moved on to other alternatives.

PMRpro profile image
PMRproAmbassador in reply toSorolla

Was your ferritin high? That is also an indicator of inflammation like ESR and CRP and was the only marker I had that was raised. Glad the consultant was better than his minion!!!!

Sorolla profile image
Sorolla in reply toPMRpro

Yes and this second consultant realised something was wrong because of it. The rheumatologist was not a minion but a highly esteemed professor with at least as high an opinion of himself as others had of him. He diagnosed osteoarthritis. Thank you for the comment!

PMRpro profile image
PMRproAmbassador in reply toSorolla

Oooops!!! Oh dear. I know a couple like that - though mostly the colleagues have a lower opinion than they do of themselves ... Sometimes they have a fixation about it being OA - I wish I knew why. Wonder if it is more common in female patients.

Sundance17 profile image
Sundance17 in reply toSorolla

Thanks for your good wishes. Every day is a learning experience, isn't it? Good luck to you on your own journey.

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