I am a new to all this...

[Pjso]

It took a year for me to be diagnosed and it was a physio who listened to me describe my symptoms and said I had PMR. Don't get me wrong my GP was doing blood tests and I even had a hospital scan. The blood results showed signs of inflammation and the scan nothing. I don't need to detail the symptoms as every reader knows them only too well. Once on steroids I responded well but got many of the side effects - weight gain, poor sleep, became pre diabetic ... So I am pleased that they now they are being reduced and I am currently on 2.5 mg a day. Each time I have a reduction in dose I have a blood test to check inflammation levels and this is the lowest dose that I have been on. This will be for the next four months and then another medication review with my doctor. What I would like to know is how do you know if the symptoms you have are due to steroid reduction or PMR. This time I have gone from 5mg daily to 2.5 mg and I feel ill - tired, body aches etc. I know that 5 mg a day is not a high dose but the reduction has hit me hard. I do not know anyone with PMR so I joined to hear other peoples experiences.

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

First comment would be a reduction from 5mg to 2.5mg in one go is much too big…usual recommendation below 10mg is 1mg every 4-8 weeks…some can manage that, others cannot.

Also recommended is each reduction should not be more than 10% of previous dose… so at 10mg that would be 1mg, and at 5mg - 0.5mg - certainly not 50%

Plus at doses lower than around 7-8mg your adrenals need to be nudged into working again, so some of your issues may be that.

A couple of links to look at -

Difference between steroid with dry and flare -

healthunlocked.com/pmrgcauk...

Adrenals -

healthunlocked.com/pmrgcauk...

And are you saying that you will remain at 2.5mg for 4 months?

[PMRpro Ambassador in reply to DorsetLady]

708mg?????

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

7-8mg!

[PMRpro Ambassador in reply to DorsetLady]

I thought so but ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Ta…

[Pjso in reply to DorsetLady]

Yes it was the consultant at my local hospital, who treated me for TA, that made that reduction. My GP was doing 1mg at a time. Each time I see him he has a different steroid regime to my GP who accepts his decisions and I go with the flow. I see him again in 4 months for a further review. All my blood test to date show no sign of inflammation although the last one was just before the current reduction.

[DorsetLady PMRGCAuk volunteer in reply to Pjso]

The problem with blood tests is that they sometimes lag behind symptom -so next one may show an increase .. but some patients don’t have raised markers anyway which is why we always say symptoms (or hopefully lack of them) are the key to reducing.

Hope you can get this recent blip under control

[Pjso in reply to DorsetLady]

Thank you to everyone who has replied to me. As a result of your feedback I have made an appointment for Monday to speak with my GP about my current symptoms. It is so good to get feedback from others who understand PMR. Thank you again.

[SnazzyD]

I may be being silly, but I can’t see over what period you have gone from your starting dose to 2.5mg.

PMR aside, for most people a 2.5mg drop to 5mg in one go would be far too fast. Your GP is not taking into consideration possible low adrenal function (side effect of steroids for more than 3 weeks) which demands a very much slower reduction speed once you are under 7/8mg. Usually it’s more like 0.5mg or perhaps one mg per month. I did even slower otherwise I couldn’t function. Do read this, form the FAQ’s on the right, as it will explain why.

healthunlocked.com/pmrgcauk...

As for side effects, did anyone suggest going on a very low carb diet? A normal healthy diet often doesn’t cut it with steroids. With Pred’s effects on the liver glycogen stores it predisposes you to high blood sugars even before you eat anything. Often drastically reducing carbs will normalise blood sugars and weight.

[Pjso in reply to SnazzyD]

I stated steroid treatment on 14/3/2022. And yes I have changed my diet so that I am no longer pre-diabetic however it is still struggle to control my weight.

[PMRpro Ambassador]

Hi and welcome - you'll find plenty of PMR people here!

I'd say it is the result of cutting your dose by 50% - all guidelines say not more than 1mg at a time under 10mg, for adrenal function 10% of the current dose is recommended. Below 10mg you are in the realms of adrenal function needing to return after being suppressed at higher doses.

You can reduce at that size step when you used pred short term, a few weeks or so, but chronic use needs a different approach. The smaller the step, the less likelihood there is of steroid withdrawal effects or of missing the dose you are looking for, the lowest effective dose that manages the inflammation, and therefore symptoms, as your starting dose did. PMR lasts an indeterminate time and as little as 1mg can be plenty to keep it under control - the lower, the slower rules.

I like the idea of remaining at the new dose for 4 months BUT I think reducing 1/2mg per month would be a lot better at this stage and get you to the same place if your body is ready for it.

[ImC_]

Hi Pjso. 5mg to 2.5mg? In one go? Ouch! Do take the advice above. Also search for DSNS, on this Forum, the Dead Slow Nearly Stopped way of going very gradually from one dose down to the next. Good luck.

[Pjso]

Thank you for your advice. I have an appointment with my GP on Monday to discuss my current situation.