Getting my life back

[spearce]

I'm new here. After a very miserable few months, when my GP decided I definitely did not have PMR, I arranged to see a rheumatologist privately and he thought it looked like PMR but because I did not feel the benefit of the 15m of pred within the first week he advised me to stop taking it. However I persisted and had a dramatic improvement after about 9 days, and apart from the first 2 or 3 painful hours each morning, I have got my life back. The Rheumy agreed to let me carry on for a month, but told me to taper off after that but I cannot face going back to how I was before.

[PMRpro Ambassador]

It looks like PMR but you are to stop taking pred? What a strange idea.

Where are you? In the UK? If so, where?

[DianeA1]

Did they take CRP and esr tests?

[MhairiP]

I wonder if you do have PMR. I'm no expert - can only go on my personal experience, but if after 9 days of 15mg pred, you are still experiencing pain for 2 or 3 hours each morning - is pred working, i.e. do you have PMR? Or do you need a higher dose of pred? It will be interesting to hear how quickly & efficiently pred worked for other people.

[PMRpro Ambassador in reply to MhairiP]

The return of pain every morning is perfectly usual in PMR if the antiinflammatory effect of pred doesn't last for 24 hours - it ranges from 12-36 hours depending on the patient. If you are towards the 12 hour end, the pain will return before the next daily dose of pred is due. And then you have to wait for the pred to be absorbed and start to act which often takes 3 to 4 hours depending on the amount of inflammation that has been created by the releases of inflammatory substances at about 4-4.30am, For many patients it helps to split the dose, usually about 2/3 in the morning and the rest at least 2 hours before you would expect the symptoms to reappear. The optimum time to take plain pred to avoid the morning pain is 2am - but who really wants to wake up then! But there are people who do that with great success.

[Soraya_PMR in reply to MhairiP]

If I took my pred at 8am I’d be stiff and in pain for 4+ hours, after 2 years on pred. This is why I take my (coated) pred at bedtime, it leads to good mornings (and IMO a lower dose required).

Initial dose: miracle in less than 6 hours. That was 20mg. At 15mg it may just need longer.

[SRIXON in reply to MhairiP]

I have been on pred for over 2 years, i got down to 4 mg but last week due to pain in my arms, neck, shoulders and feeling lousy in a morning i had to up my pred to 8mg. I do feel better but still having headaches and pain in my arms especially in a morning.

Any suggestions, should i go up more on pred noting i am a type 2D and suffer with BP.

[Soraya_PMR]

spearce how about trying your pred at 2am if plain pred (earlier if coated) and see how your mornings go.

Then go back to that rheumi and show him the difference.

[spearce in reply to Soraya_PMR]

Thanks to everyone. Yes I do already take the pred at 2am which makes mornings a little better. The Rheumy wants me to come off it sooner than usual because of his doubts about the diagnosis due to the length of time I took to improve. I don't feel sure of anything, but I can't think what else it can be. It bears no relationship to descriptions of RA which is the only other thing they come up with.

[PMRpro Ambassador in reply to spearce]

Then he should have tried a bit more pred - the most recent guidelines say the lowest effective dose in the range 12.5 to 25mg:

rheumatology.org/Portals/0/...

Recommendation 3

Some people need more, some less, some need a bit longer than others. You can't say it isn't PMR because you needed a bit longer.

[Hidden]

The telling thing is you feel that once the pred kicks in you have your life back. You probably do things you normally would so when the pred wears off by the night, you have the morning pain.

As others have said, if you are on 15mg it might not be quite enough, but you might find splitting the dose and having a smaller dose at night and then the larger dose as you wake. Are the tablets coated? Coated ones are different coloured on basis of mg, non coated are white. Coated take longer to disperse as they go through the sensitive bits of the tummy before they do so. Try not to worry about them stealing pred back! Stress is bad for you whether it's PMR or something else. 🌻

[Hidden]

After a bumpy start dosage wise, my Dr told me to go to 15 mg each day. That was 14 months ago. In hindsight and through the discussions on this forum, I believe I should have started at 20 mg as I was still in much pain(although somewhat improved). I wish I had been more assertive as I did mention to the Dr I was still in pain. So maybe you needed to start at 20. Just a thought.

[Pmrmolly2018]

I was diagnosed in June 2018.. started on15mg which did not take quick effect. Requested an up...reluctantly GP put me on 20mg...a quick and radical improvement. BUT still stiff in morning for several hours. After discussion, split dose. Bedtime and early morning. Worked well although do get tired in evenings. ..little discomfort and no problems with sleeping.

It is a complicated and dispiriting road at times...this forum promotes patience.

[Thelmarina]

I was diagnosed in June 2017. I started at 15mgs, then went up to 20/25mgs before I got relief and it took several days - no magic for me. Then I was able to quickly drop to 20mgs and am now on 11mgs. I taper very slowly as I am sensitive to the decrease. Hearing your story I’m very grateful for my kindly GP who lets me get on with it. It does sound as if you needed the higher dose like me. I’d me reluctant to drop too much too soon.

[spearce in reply to Thelmarina]

I'm so grateful for everyone's help and comments. I'm not due to see The Rheumy for 3 months and will have to forge the next bit using my own judgement informed by you.

I have now been on 15m of pred for 5 weeks, latterly at 2am, and still having quite a lot of pain from about 6-8 am (Though less with the 2am dose). Although I probably should have started on a higher dose, should I just carry on as I am at the moment, but just delay the first taper for another 2-3 weeks? Having got so far I'm reluctant to increase now unless there is a physiological reason to do so.

Oh dear I feel so self-obsessed!

[PMRpro Ambassador in reply to spearce]

If you still have a few symptoms after 5 weeks at 15mg it would be sensible for someone to suggest trying 20mg for a week to see if it helps.

[katiemills]

I agree with Thelmarina - it sounds like you needed a higher dose and I'd be reluctant to taper as quickly as your rheumy wants - you clearly have a lot of inflammation still . I had the usual blood tests and was diagnosed in October 2018 . Started on 15 mg but had to increase to 25 mg and then 30 mg over a couple of weeks to get relief . My GP was concerned it wasn't PMR after all because I had to have such a high dose and referred me to a rheumy who did all sorts of tests for other things and came to the conclusion that it was PMR . I was still on 20 mg in December and the pain was kicking in again. My rheumy has tried to insist on a faster taper but I refused and we've agreed on 1 mg a month and I'm now at 16 mgs . if I don't succeed with the reduction because of too much pain I'll start Methotrexate in 3 months time . I hope my story helps - good luck !

[LWNE]

hello - I am new to this forum - I was diagnosed with PMR 6 months ago, and am tapering prednisolone slowly. So far, so good - I am down from 15mg to 10mg (had a slight set back at beginning when i tried to taper much too quickly)

have people gone from 10mg to 7.5 (perhaps alternate days at first) successfully? or is it best literally to come down 1 mg at a time?

any help would be much appreciated! I still have a bit of pain and stiffness in my shoulders first thing, but does not bother me too much, and goes once I am up and about

( I work full time, so that takes my mind off it!)

[PMRpro Ambassador in reply to LWNE]

Why don't you post this as a new thread - you will get far more answers then as people don't all follow all threads once they have read the first post if they aren't interested.

From 10mg the guidelines all suggest 1mg per month - some work suggests that trying to go faster is predictive of relapse and for some people even that turns out to be too much at one time. A basic approach to tapering is that no reduction step should be more than 10% of the current dose - 1mg at 10 but by 5mg it is down to 1/2mg. There are a few different approaches to smooth the downward path - you'll hear about them if you need them and ask!

You are not tapering relentlessly to zero - you are looking for the lowest dose that manages your symptoms as well as the starting dose did which may be a very different thing and take rather longer to determine than your doctor thinks.

[LWNE in reply to PMRpro]

thnaks so much for prompt and helpful reply!

[bakingD in reply to LWNE]

Hi

I was diagnosed last May and tapered too quickly down to 2mg so by this last Dec had a bad flare and had to go back up to 15mg.Then went to 10mg.From 10mg have tapered v slowly 1 mg at a time and from 7mg to 6mg it caused pain and stiffness to come back so then went back to 7mg for a couple of weeks now down to 6.5 mg and it seems better, I still have some morning pain and stiffness but my rule is if I don't need extra Paracetamol am doing ok.Slowly seems to be the best, and yes Paracetamol does help a bit if needed as quoted by Kate Gilbert in her PMR book.

[LWNE in reply to bakingD]

Thanks so much for helpful reply. Yes, Im planning to stay on 10mg for another 3 weeks at least as im going to be walking 100 kilometres of the santiago pilgrim trail in Spain the first week in May! Ive been so relieved that this horrid PMR has not stopped me from hiking, I go out every Sunday with a local group, and it definitely helps my wellbeing. Ive had a bone scan, and all seems to be ok, though I guess GP is thinking about possible longer term effects of steroids. He has suggested I consider taking Alendronic acid once a week, but Im not sure...

[PMRpro Ambassador in reply to LWNE]

Dexascan first - no dexascan, no AA ...

[LWNE in reply to PMRpro]

Thanks, yep, ive had scan and it was ok - i have an osteopenia score of minus 0.2 compared to a "healthy 20 year old" - and I am 61, so dont think thats too bad. I def dont want to take the AA unless i really need to, so am going to wait and see.

[PMRpro Ambassador in reply to LWNE]

That definitely means no AA - it should not be used when you have a normal bone density. What is he thinking of?