well I was optimistic!

[Billiebobdog]

just to update

15 mgs of preds has worked wonders, the aches have receded to totally manageable levels, brain fog and total lethargy gone. I feel so much better this being the 4th day back on 15 mgs, need to decide on a sensible reduction plan now

ironically my CRP and ESR levels are stubbornly remaining at 1 & 6 which is where they had dropped to, although the ESR did get as low as 4. Thankfully the GP is happy to treat symptoms and not just results and since our health authority said I will never see a rheumatologist it’s between me and the GP has we manage things

Fingers crossed I can manage this back to a level of steroids that are acceptable and yet keep the symptoms at bay, I’d like to keep my hair and nails where they have got back to from when I started this journey.

I had managed to get myself down to 1mg of preds and after a month (end November) of that decided that it wasn’t making any difference to how I was feeling so stopped taking them. My general feeling not 100% hadn’t improved when I upped my dose a few months before that so I thought that maybe there was something else going on and to let my system have a break from the Preds. Well how wrong was I EVERYTHING has been screaming at me ‘you are having a flare get this sorted’ had a telephone chat with my GP this week as I wanted my bloods taking without any steroids in my system, she agreed but added ‘sounds like it’s back so we will do bloods and you go back onto 15 mgs and we will speak next week’

So here I am back at the beginning again hoping that I can knock the hurting body, exhausted feeling on the head and get back down to a reasonable dose reasonably quickly without too much damage (I was lucky last time, no really bad side effects) and let’s see what the blood tests show next week but goodness me I have been a wreck for the last few weeks, battling through on paracetamol just does not work at all

[SnazzyD]

Oh dear! Presumably your flare means pain? At what dose were you last comfortable? Wondering why you are having to go all the way back to 15mg.

Your lack of 100% feeling also may have been your adrenal glands not working properly yet.

[Billiebobdog in reply to SnazzyD]

I was ok when I went down to 5mgs, the aches and pains are partially due to arthritic changes anyway and a busted shoulder from a few years back so it can be hard to work out what’s what, but the generalised discomfort and exhaustion (chronic pain will do that to,you) I have been feeling is very reminiscent of when this all started. Doctor said 15 to get the inflammation down and we will chat on Thursday but I think she’s keen I come down quite quickly back to a lower level. We will see if I feel better in a couple of days, hope so as this is really rather unpleasant if I am honest

[SnazzyD in reply to Billiebobdog]

That’s the problem with exhaustion, you can’t always tell if it is low cortisol from adrenal glands not yet fully working or an impending flare or both. Chronic pain will also make you less able to stump up the cortisol from your adrenal glands as your demand may be higher. Whipping away 1mg will not have been easy for the system. Anyway, for now your PMR is in charge and worrying about adrenal function is on the back burner until you are nearer 5mg and down. I hope this has come in time to save Christmas. I think there’s a film with a title like that but I doubt it invloves Pred!

[PMRpro Ambassador in reply to SnazzyD]

Maybe we should make one ...

[123-go in reply to PMRpro]

Good idea! I’m sure there’d be a large group to choose from to play the protagonist …and also the villain 🤨.

[PMRpro Ambassador]

Hard luck - but now you know why we say that even 1mg can be plenty to keep the daily dose of new inflammation under control but zero is a step too far!

What a sensible GP - and I think she is quite right about you being able to get to a low dose quickly, certainly down to 5mg in a matter of a couple of weeks and even below that quite soon. When I first started pred I had 2 weeks each at 15, 10 and 5mg and despite 5 years of stored up inflammation the worst improved in 6 hours and I was fine at 5mg for 2 weeks - but within 6 hours of missing the first 5mg dose I was in more pain than at the start, in tears in bed - or maybe it just felt that way after weeks of feeling so much better.

With a bit of luck you'll be able to do much the same and you and Christmas will be rescued!

[Billiebobdog in reply to PMRpro]

I will add the GP also said that the blood tests may not show inflammation but I was definitely symptomatic so that’s what we would work on

She is a very sensible GP

[PMRpro Ambassador in reply to Billiebobdog]

She's a real keeper - and hopefull she will teach others about how to deal with PMR patients.

[borednow in reply to PMRpro]

Indeed - she deserves a medal.

[DorsetLady PMRGCAuk volunteer]

Now you know why we say 1mg or even 0.5mg can make more difference than you realise…

Won’t repeat what others have said…Hope you get back on track asap

[Billiebobdog in reply to DorsetLady]

In reality the 1 mg wasn’t making any difference to how I was feeling, I had gone up to 7 mgs a couple of months before but probably should have been more thoughtful about what I was doing and came back down a lot slower, but COVID added in to the mix of being unreasonably busy and I was just fed up of taking tablets

Lesson learnt I guess, let’s hope things improve but boy it’s boring having to be so aware of what the body is saying and the sheer exhaustion of being in chronic pain all the time

I’ll get the advice and hopefully comedown quickly but sensibly

[DorsetLady PMRGCAuk volunteer in reply to Billiebobdog]

In reality the 1 mg wasn’t making any difference to how I was feeling,

That may be true -but it’s always sensible to take things more slowly… so via 0.5mg. Just saying -from personal opinion and reading others on here…

[Billiebobdog in reply to DorsetLady]

I know now!

I can be the idiot that proves the rule 🤪

[Guilluame]

Well done you, I am not sure if you are saying that from the beginning a month previous you got right down to 1mg which is pretty amazing. After 2years very slowly decreasing I was down to 1mg by June this year and stopped the steroids completely. I have now been diagnosed with Thyroid autoimmune disease, with raised antibodies, but T3, T4 and TSH levels all normal and am awaiting a phone consultation from the gp, to see where we go from here, so I am wondering whether any of this is connected or whether I was gung-ho and stopped the steroids too soon. Just a thought.

[PMRpro Ambassador in reply to Guilluame]

Once you have one autoimmune disorder, you are more likely to develop another - I know several with thyroid problems as well as PMR.

[MojitoQueen in reply to PMRpro]

Yes indeed this is so true! I started with hypothyroidism in 2017, then got PMR in 2021, then RA in 2022 & (lucky me!😂) Vasulitis in 2023! That’s autoimmunity … the gift that keeps on giving! 😂

[PMRpro Ambassador in reply to MojitoQueen]

You do seem to have drawn the odd short straw or two!!!

[MojitoQueen in reply to PMRpro]

indeed I have, PMR pro, but to be honest, I consider myself fortunate. Two of my sisters have had RA for decades so to only get mine when I was 70 is a blessing. Then of course there’s the magic that is Pred! I started on 20mg pd in 2021 and am now cruising along on 1mg pd. I don’t seem to be able to taper below that without getting a bit of a flare so, following your & DL’s advice, I know that that’s the level for me to manage my PMR (and RA) and to still be totally active & manage three 8 mile hikes a week. I have six other life long conditions too … all treatable with meds … but, all in all .. it could be so much worse. 🥴 I really appreciate all the expert advice I’ve received on this forum and have learned so much from you all! Thank you! 😘

[Doraflora]

do hope you soon get back on track, Billiebobdog. But thankfully it sounds like you’ve an excellent GP there, so hang on in - and good luck.

[artisam]

Oh poor you, but also lucky you to have a great GP. I was in a similar situation when I got down to 1mg. Came off them on rheumy’s advice and a few months later after a lot of pain and way too many pain killers was back on them again at 15mg. Good news is I was able to reduce very quickly and easily once the inflammation was under control. 3 mg now and am sticking here for a long while. My new rheumy is very happy for me to tackle this last bit the way I want to, so definitely not making the same mistake again and if I stay on 1mg for ever, so be it.

Hope your new journey is similarly successful. Stay positive if you can, it really helps. Take care xxx