predisolone

[okydocky]

1mg of predisolone

How are you managing with this low dosage?

Love to all

Paul Turner

[PMRpro Ambassador]

Sorry - not quite clear what you mean. There are very few people on here who are down to 1mg pred and those that are have tapered appropriately and adjudged that 1mg is still adequate for the state of their PMR at present,

[okydocky in reply to PMRpro]

Thank you

[DorsetLady PMRGCAuk volunteer]

Your bio say struggling - that means different things to different people.

At such a low dose could mean it's not enough to manage your PMR or may be your adrenal glands struggling, or a combination - so a bit more info would be useful.

[okydocky in reply to DorsetLady]

Thank you for your input. When I wake up before my pill of 1mg , left wrist , shoulders really stiff. Also feel mentally a bit fatigued. After the pill feel noticeably better and more mobile.

I still do approx 13000 fit bit steps a day . What would be the long term likely consequences if I increased my dose to 2mg. until further notice

Regards Paul

[DorsetLady PMRGCAuk volunteer in reply to okydocky]

Not sure how long you have had PMR this time around .but I doubt 2mg of Pred is going to cause any long term issues. ..and you will be able to reduce in time - just not at the moment.

Honestly uncontrolled PMR is likely to be more damaging.

Fatigue is likely to be adrenal related -see the link I attached to another poster further down the thread. Here -

healthunlocked.com/pmrgcauk...

[TheMoaningViolet]

Hi, I was fine on 1 mg: I had a great sense of wellbeing and starting to feel completely like myself again. I am now reducing to 0.5 mg and finding it somewhat challenging, but I am dealing with it by moving super slowly. I need my sleep to be extremely well managed now, I must get enough sleep every night to be able to cope during the day. I am quite emotional and tire easily. I also feel my muscles are weak, but this is not the case. I have been working on my muscles from the start and I am actually quite strong. I found Christmas exhausting this year and have stayed on the alternating days for a couple of weeks because of it. I intend to continue moving slowly and stop as required.

[okydocky in reply to TheMoaningViolet]

Found your input really useful TheMoaningViolet thank you

[TheMoaningViolet in reply to okydocky]

Good luck with your progress and happy new year.

[okydocky in reply to TheMoaningViolet]

looking again at your post , Christmas took its toll as we were hosts , bit like a hotel with high turnover. Anyway now better but may not continue next year with so much😊😊😊

[Meggsy]

I was quite comfortable on 1mg. It took me 41/2 years to get there. At 2.5mg I found 0.5mg tapers no longer worked so have been decreasing very slowly by 0.25 since. Presently on 0.75mg and will be staying there for quite a while. It has been a slow journey but as has been said, it’s not slow if it works.

[okydocky in reply to Meggsy]

Meggsy thank you so much

Regards Paul Turner

[okydocky in reply to okydocky]

Thank you Megsy for the info

[Suffererc]

I am on 1mg. My GP has taken over my care and wants me to stop asap. GP thinks I no longer have PMR because my markers are low. (10). I am struggling with hip pain, climbing stairs is painful, my should are aching. Am going to ask to go back to 5mg for a week, even 1 dose will tell.

Blood tests this week again.

She also thinks I should just stop now I have got to 1mg.

I was fine on 2 and tapered .5 to 1.

Rather have quality of life than this .

[PMRpro Ambassador in reply to Suffererc]

Oh dear. No chance of a different, more clued up GP?

[Suffererc in reply to PMRpro]

they all the same. Can’t be bothered with patients. Makes you wonder why they are there

[PMRpro Ambassador in reply to Suffererc]

Payday ...

[Suffererc in reply to PMRpro]

yep 😂🤣😂🤣😂

[larkthebark in reply to Suffererc]

Such a shame when GPs have this attitude. If you look at my posts I am slowly weaning down to 1mg and my GP told me to take as long as I want. He totally agrees with everything this site has taught me and although my CRP was only one he agreed that it may not be significant .

Its rather sad that I should be feeling lucky to have a GP who thinks outside of the NICE guideline box .

[PMRpro Ambassador in reply to larkthebark]

A paragon - hope he teaches his colleagues!

[okydocky in reply to Suffererc]

Suffererc got your input and thank you .Useful for me , we will sort this

[Octi]

I’m currently tapering from 1.5 to 1. Some days I feel very strange, difficult to describe exactly in what way but it feels like a wave of something passes over me. I’m working full time, on my feet all day, and every few days the tiredness catches up with me and I really struggle. Planning to try reducing by 0.25 very slowly once I get down to 1. I’m very interested to hear other people’s experiences at this low level.

[DorsetLady PMRGCAuk volunteer in reply to Octi]

Could be adrenals struggling - fatigue is a very common symptom of that...see link -

healthunlocked.com/pmrgcauk...

.. and to be honest I would stay at 1mg for a good while once you get there,...and to get from 40mg to the level you are within 18-19 months is very quick. Hold fire, and give your adrenals time to catch up.

[Octi in reply to DorsetLady]

Thank you 😊

[Octi in reply to DorsetLady]

Hi. How long would you say is ‘a good while’? A month?

[DorsetLady PMRGCAuk volunteer in reply to Octi]

Probably a good plan [even longer would do no harm], especially in winter, body is not functioning as well in general…and we need all the help we can…

Good luck

[Octi in reply to DorsetLady]

Thank you very much, I don’t know what we’d all do without you 😊

[DorsetLady PMRGCAuk volunteer in reply to Octi]

You're welcome...

[Blossom20]

I tapered slowly, .5 every 2 weeks. Shoulder and hip stiffness on the lower doses, but I put it down to age. When I got to zero my deltoids ( upper arms) got really sore - flare I guess.

So I'm back to 3mg now for a while!

[Koalajane]

can you tell us how you are feeling and are you on that dose olease

[62movies]

Congratulations to you for getting this far. I hope 2023 brings even better results. Happy New Year

[okydocky in reply to 62movies]

Thank you and you😀

[MarkWin]

Whilst this is a low dose and suggests that you have successfully weaned that low, it doesn't seem to work that way. I came down to 1.5 Pred/day about 6 weeks ago (and remain on 20 MTX/week) and have had major issues since and few seem to be GCA/eye related, though major headaches, erratic sleep pattern and everything that goes with that, and general lack of energy. CRP gone from 2 to 4, and ESR from 4 to 12; this is apparently normal/within limits. Somehow I do not feel so sure. My Rheumy has said I may remain on 1.5/day till end January, when I should reduce by another .5 and is handing responsibility over to GP (who is new to practice and I have yet to meet)! I am pretty unsure where I go from here as noone is listening to me and what I am going through, but I do - sort of - understand the desire to get to zero. Am hoping 2023 may bring a rather more enlightened view to the table. Fortunately my dear wife copes with all of this, but after 5 years, her patience is wearing very thin. 1mg is not much, and if the adrenals are working will be minimal I think, but it would really help if the medical profession might listen to us as individuals though I realise they have a huge amount on at present.

[DorsetLady PMRGCAuk volunteer in reply to MarkWin]

Your inflammation markers may well be within normal limits, but as they have risen I would want them tested again before I decided to reduce further.

Also sounds as if your GCA maybe be objecting to the decrease -it might only be 0.5mg but as we know at very low doses that can make a big difference. The fatigue I would lay at the door of your adrenals struggling.

You may find that being referred back to GP - and a new one at that may actually be beneficial…you never know, and you discover he is interested.

[MarkWin in reply to DorsetLady]

Thank you so much. Actually, I believe my GP will be a lady😀

[DorsetLady PMRGCAuk volunteer in reply to MarkWin]

Ah well, say no more 🤔….

[Suffererc in reply to MarkWin]

mine is a lady ……. no comment !

[PMRpro Ambassador in reply to MarkWin]

It may be within normal limits - but that does NOT mean it is normal for YOU.

The "normal range" is the range of levels found in 95% of a large population (usually 10,000 or more) of nominally healthy subjects. It is NOT a range that is OK for a single person. Your personal normal is like mine, low single figures. Anything above about 5 should suggest close monitoring and once you get to double figures - there is something going on. Your markers are rising - and THAT means something is happening. Were they rising without symptoms, it could be a cold or something else. But you have symptoms - and that suggests care is needed.

It is a problem - I know this because I worked in the field. Many doctors don't know that - and it is part of the reason they are so fixated on the numbers game rather than clinical skills. Get your ducks in a row - and hope s/he is better educated than many.

[Suffererc in reply to PMRpro]

my markers went to 10ams I was told it was very low!!!!

[PMRpro Ambassador in reply to Suffererc]

The range for ESR is from 1 to 20, some people have results in low single figures, some have results that are IRO 20. And 5% have results outside that range but that is normal for them.

[okydocky in reply to MarkWin]

Thank you for your input🙏😊

[Odosmum]

I am on 1 mg and have been hovering around this amount for around 18 months now. In May 2022, I managed to get down to 0.5 mg every two days. By August, I was concerned about the amount of general pain I had because I was taking 2 doses of paracetamol and 1 dose of cocodamol per day. My liver function throws concerning results from time to time, so I would rather not take so much paracetamol.

Mindful of PMRpro's advice that we have to take a level of pred that is right for us, I contacted the surgery. My GP listened to what I had to say and said that she thought that I should return to 1 mg per day and see how that dose suited. I did, and within a short time I was off the paracetamol and only taking 1 dose of cocodamol at night (which I have been taking for years, for my RA).

I have remained on 1 mg though the Autumn because of vaccinations (covid and flu - I have to take them separately because I react very strongly). Only had 3 or 4 days of feeling rough, so I think that was the correct course of action. Didn't want to do anything prior to Christmas and I'm so glad I did not. Husband and I contracted the flu a week or so before Christmas and although we have not been seriously ill, Christmas Day itself was quite bad. I had a chest infection and had to contact NHS 24 for antibiotics on 24th (after playing a full programme of church services). I also played 25th and went straight home to bed. Yes I know I overdid it and would have expected to be floored for a week or so, but I wasn't. Virus symptoms have gone and the chest has cleared up.

SO - after all that - I am quite comfortable and stable on 1 mg (I also take Leflunamide and Adalimumab for RA). I still want to be able to stop entirely, but am not going to do anything daft. My aim for February is to try to reduce (again) to 0.5mg. I reduce very slowly.

Just one more thing in this long tale - I acquired steroid induced diabetes in 2018 and have had some quite bizarre hba1c results since contracting covid in late 2019 (it was rife in Dublin at the time). At one point I was taking 4x 500mg Metformin and Sitagliptin per day even though my diet had not changed. Sitagliptin was stopped about 8 months ago and my latest hba1c on Friday was 45 - pre-diabetic level. I am now down to 2 Metformin per day - again with no change to diet. I am over the moon!