5 mg predisolone

[okydocky]

Paul here has anybody been on 5mg of predisolone for 1 or 2 years

Any negatives ?

Need to be on this because my aches etc without it are reducing the quality of my life

Any thoughts

[PMRpro Ambassador]

I have been on pred for 14 years, most of it at above 10mg, I have had to use Actemra to get down to 5mg which I have been at for a couple of months now, The last time I had a dexascan it was very little different from the previous one or the original one 2 months after starting pred, I have no diabetes, I gained weight with PMR. lost most of it while on 10-15mg pred, I have had thin delicate skin at higher doses, at 5mg it is almost back to normal.

The thought of being on 5mg pred for 1 or 2 years - or even a lot longer - doesn't faze me in the least, and certainly not if that low a dose assures a decent quality of life.

You don't tell us a lot about your pred history - except that 8 months ago you were on 1mg and struggling. It would help to know how long you have been on pred from the start and how you tapered.

PMR lasts a lot longer than most doctors think. If you go to too low a dose of pred, the inflammation will build up again if the disease is active and since you joined in Dec 2022 I am inclined to think that is what you have done. Almost no-one would get to 1mg in a few months - for half of patients it takes up to 18 months to get from 15mg to 5mg.

In PMR you don't reduce the dose of pred in the same way you do in acute disorders like chest infections. Pred cures nothing, it is a management strategy and you use a higher dose to get things under control and then taper the dose SLOWLY, not more than 1mg per month from 10mg down, to find the lowest effective dose, the lowest dose that manages the symptoms as well as the starting dose did. If you have only had PMR for less than a year, to be on 5mg is not bad going. Had you tapered the way we suggest on the forum, you wouldn't have spent the summer struggling. You can't hurry PMR.

[okydocky in reply to PMRpro]

Thank you so much for your feedback very helpful👍

[DorsetLady PMRGCAuk volunteer]

As PMRpro says -if you give us a fuller understanding of your history of PMR/Pred/tapering we could give better advice.

But if you’ve gone from 1mg back up to 5mg your illness is obviously not under control -hence the aches/pains.

[okydocky in reply to DorsetLady]

You are correct . Was on zero for 10 days 20.08.2023 felt shit . Just wanted to have a go , more light exercise, no coffee, more water etc , good healthy food unfortunately did not work. Now on 5mg at feel great in comparison feel like I have my life back . On 13.7.2016 started on 15 mg tapering to zero in approx 1year

Then back on in 24.6.2021 15 mg same scenario but got down to 1mg Dec 2022 and stayed on 1 mg up to Aug 2023 . This amount felt not enough.

[PMRpro Ambassador in reply to okydocky]

If you keep doing that you will find it increasingly difficult to reduce the dose. Don't get into a yo-yo pattern with the dose of pred - you will regret it in the longterm.

[okydocky in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk volunteer in reply to okydocky]

Now on 5mg at feel great in comparison feel like I have my life back

Good, but don’t go silly -and think you’re invincible.

As you’ve discovered and as PMRpro says once you get into a yo-yoing situation it doesn’t usually end well. So a much slower taper this time around.

[Odosmum in reply to okydocky]

My story has some similarities. Spoke to my GP and she asked about which dose I took which made me feel normal. It was 1 mg. She had me take 5mg for a week and reduce by 1 mg per week to 1mg. I was sceptical but did what she said and was stable at that dose for 6 months or so when I developed a photosensitive rash - but that's another story. When I saw my rheumatologist, he said that he was comfortable with long term low doses because the dose is lower than the body produces naturally. They aim for 0, but know it's not always possible.

[PMRpro Ambassador in reply to Odosmum]

"They aim for 0, but know it's not always possible."

Wish a few more thought like that!!!

[cranberryt]

It took me a couple years to get from 5mg to 2mg. Personally I would say don’t rush it but also don’t give up on going lower in the future if you’re able to. It would lower your lifetime cumulative dose which can be a factor in long term side effects from prednisone. I am not an expert by any means though!

[okydocky in reply to cranberryt]

Thank you so much👍

[okydocky in reply to cranberryt]

👍

[Pentley]

I have had PMR for over 15 years. With lots of issues early on I have been on 6mg for over 8 years and for the past 4 years I managed to get to 5mg. I have tried to get to 4.5mg without success. I am now turned 80 and enjoy an active life with few issues. I have yearly meetings with my Rhymy and have had several bone tests with no problems so far. Hope that answers your questions

[okydocky in reply to Pentley]

👍

[okydocky in reply to Pentley]

Thank you

[oscarandchloe]

Hi, I was on 5mg Pred for about 2 years while having hip replacement ops. Just felt I couldn't cope with reducing and all the pain and recovery attached to the ops. As far as I can see there have been no ill effects at all and I've had no flares or symptoms of GCA or PMR.

[SheffieldSonia]

I have been on 5mg for the last 3yrs. My doctor said I was on it for life. I am 82yrs old and care for my husband who has advanced Dementia. Have tried tapering down a few times but couldn’t get past 4mg. My GP said not to bother. 5mg keeps me at a pain level where I can still function, do my housework etc, and care for husband single handed. I have learnt to live with side effects of Pred it takes the edge off my oesteo arthritis as well so GP happy and I’m ok with it now.

[okydocky in reply to SheffieldSonia]

Thank you Sonia

[9lives]

hi I was diagnosed in June 2016 started at 20mg then 15 mg and then a very slow taper thereafter. I got down to 1 mg last year but in January of this year I tried to reduce further but ended up going back up to 2mg. Which I am still on. It’s a case of you need what you need to manage the condition. I found it hard to accept that at first, like us all we don’t want to be on the steroids but it’s better than the alternative. Good luck and listen to your body.

Carole

[Ellie5669]

Hi I've been on 5mg about 10yrs because my body won't tolerate going lower than that

Hope that helps