Low dose pred long term effects

[Gaz227]

Hi All , I haven’t posted for some time wondered if there are any other people in my current situation . Been on pred 3 years this July , usual story reduced from 20mg few flares along the way , got down to 3.5mg and can’t get any lower every time I try all sorts of problems surface , back lower and upper, neck , knees, even hands a feet hurt. I don’t have a Rheumy any more he discharged me back to my GP and said I am most likely one of the people that will be on a low dose of pred for life and the side effects below 5mg are minimal , is this the case or has anyone still developed other health problems remaining on a low dose. I tried many different methods to reduce , dead slow , even dead dead slow lol, but none seem to work, remaining on the low dose gives me a good quality of life so Is this the answer for now at least ? Your thoughts please fellow sufferers.

[DorsetLady PMRGCAuk volunteer]

Hi Gaz,

Have a look at PMRpro’s post about low levels of Pred -

healthunlocked.com/pmrgcauk....

She has a vested interest as she has been on low doses for a good number of years, and rightly says - I paraphrase - “what’s the point of being on not enough Pred, when a small dose is keeping you out of pain, but not causing any problems in the side effect line”.

If 3.5mg is giving you a good quality of life then stick to it. Doesn’t mean some time you won’t get off Pred, but even if you don’t, it’s no great shakes, many of us are on medication for life so many things!

So long as doctor monitors for any problems regularly - accept it is what it is!

Take care.

[Gaz227 in reply to DorsetLady]

Thank you Dorset lady , I did feel that way think I just needed some reassurance on the matter , just read PMR pro’s info very enlightening 👍

[PMRpro Ambassador]

Many people need low doses of pred for life without crumbling! I've been on pred for nearly 9 years, quite a lot of it at above 10mg though I have got as low as 4mg and am currently at 9mg although for the PMR lower is fine.

A recent study has shown the low doses for pred are not problematic

medpagetoday.com/rheumatolo...

practicalpainmanagement.com...

are two articles about the same study with slightly different slants. An age-matched population not on pred would experience the same things that many of our doctors jump to blame on pred.

The underlying cause of the symptoms we call PMR remains active for a long time - an average of 5.9 years according to the study, so for some it lasts even longer. Mine has been around for 14 years now.

You aren't reducing relentlessly to zero - ever. You are looking for the lowest dose that provides the same benefit as the starting dose did. When you repeatedly get stuck at the same dose it is a sure sign you have arrived. 5mg would be my choice, possibly 4mg if it is just as good (but 5mg is convenient!)

[Gaz227 in reply to PMRpro]

Thanks for the. Reassurance PMR pro, I keep being pushed both by my GP and before I was discharged by my Rheumy to get off the press’s quickly as possible . I have tried at least 4 times to get to 3 Mg but every time I just crashed and had 2 weeks trying to stabilise again. I will stay at 3.5mg for a few months and get some quality of life back , I am a competitive martial artist and managing to train well at 3.5mg so I guess that’s me for now , thanks again 👍😀

[Grants148]

Hello Gaz227,I also cannot lower my preds ,l am down to 3mgs but whenever l try to lower by just 1/2 mg, l get pain in my neck,arms and shoulders,and feel like the PMR is all going to come back.Dorset Lady Is right when she says that staying on a low dose that gives you a good quality of life is the best thing to do. I still do not have a lot of energy and have to be careful not to overdo things,the lovely weather gave me the chance to tackle some much needed work on my garden,but l was exhausted the next day,l just cannot do the things that l used to. Kindest regards,Patricia.

[Gaz227 in reply to Grants148]

Hi Patricia , I guess we have to be thankful that we at least have it under control , I remember a couple of years back thinking will I ever have a normal life again . Thanks for your reply and good luck for the future 😀👍

[Grants148]

Thanks,Gaz,l wish you good luck too.

[Telian]

Hi Gaz

I'm similar to you in that I can't get below 3mg. Diagnosed with GCA 2014 and PMR followed. Started 50mg and through ups and downs got to 3mg 18 months ago and was good on that.

Then had a flare following a procedure last month so upped to 4 then 5 and am now trying to get back to 3.

My rheumy says he is happy for me to be on 3 but not on 5! He seems resolute that 3 might be my pal for a while but I am reassured that I shouldn't worry. I have to go reeeally slow now with my reductions so it's still in charge. As you said you had a better quality of life on 3 so I want to return to that no matter how long it takes, can't stand this head...

All the best

Funny calling you Gaz that's my son's nickname by his mates only, we don't call him that, apparently they think he looks like footballer Paul Gascoigne (Gazzer)- nothing to be proud of I say..

[Gaz227 in reply to Telian]

Thanks for the reply , i’m Just getting back to some normality on 3.5 Mg it is frustrating as I couldn’t have gone any slower half a Mg reduction in 10 weeks I guess that’s me for now , good luck getting back to 3 slow and steady as they say .

Gaz or Gary is one of the names they reckon is dieing out. Not to soon I hope lol, all the best 👍

[Telian in reply to Gaz227]

Thanks Gaz, does look like it's 3.5 for now - you never know!

Names are like fashion they come and go, to add more confusion my son's name is Stephen! As I said Gazzer is only his 'mates name'. You know what us mums are like, I am the only one that calls him Stephen - he won't let his wife call him it only mum can! everyone else it's Steve.. There we go what a conversation eh! All the best

[Mrs-CJ]

I too am stuck in the 3-ish mg of prednisone for my PMR. My aches are ok at a lower level but I have terrible fatigue. I think my adrenals don’t want to wake up...yet. Quite frustrating 😜

[Gaz227 in reply to Mrs-CJ]

Beginning to think this is more common than I thought 😩, good luck

[PMRpro Ambassador in reply to Gaz227]

It is - I have surprised a couple of doctors with the figures from the forums.

[Gaz227 in reply to Mrs-CJ]

Beginning to think this is more common than I thought 😩, good luck