Over - not over

[sealine30]

Not posted for a long time. Was beginning to think I was coming to the end of my PMR journey. Got my diagnosis for my symptoms at 49 and now at 54 and comfortable at 2.5mg pred thought it was time to drop another half mg. One week later and my symptoms have begun to retun. Always shoulders and knees! Back up to 2.5 and hope for a quick reversal. Fingers crossed!

[DorsetLady PMRGCAuk volunteer]

Let’s hope so - but if you need more, then you know what to do.

At such a low levels you aren’t likely to get any side effects, so don’t be in a rush to get to zero - as you’ve found out your PMR is still active - so although it may be disheartening - you just have to accept that.

You will get there one day, but not just yet.

[PMRpro Ambassador]

If you weren't quick enough - try going to 5mg for a few days. But at this level - no worries. I wish I was at 2.5mg!!!!

[Constance13 in reply to PMRpro]

What are you on now Pp?

[PMRpro Ambassador in reply to Constance13]

11 or 12 the last week or so...

[Constance13 in reply to PMRpro]

When you and the others instigated these forums 11+ years ago did you ever imagine you would still be

moderating/advising for this long?

Had you ever heard of anyone being on pred (for this illness) for as long as you have? Do you think you'll ever get down to 3mg?

[PMRpro Ambassador in reply to Constance13]

3mg? I doubt it - if I get to 5mg again I'll stop trying!

I do know of others who have had PMR as long as I have, even of people who got off pred after 11 years, who probably were on pred sooner than I was though. Did I expect to still be here? Don't know, never thought about it. But being off pred wouldn't mean I disappeared - you don't get rid of me that easily

[Constance13 in reply to PMRpro]

Or me!😂😂

[AmberAliona in reply to PMRpro]

I have a friend who is now in his 13th year of PMR. he only takes 1.5mgs Pred, but knows if he forgets to take it.

[PMRpro Ambassador in reply to AmberAliona]

I wish!!!!!!

[maria40 in reply to Constance13]

I've been taking steroids for 19 years, initially for PMR and later GCA. I'm so glad that this forum has introduced me to DSNS as I've tapered down to 6.5 in the last year, lower than I've over achieved before without a flare. Like PMRpro I'll be happy to stick at 5mg if I can get there.

[Hidden in reply to maria40]

I think the DSNS taper should be officially recognised!!!!

[PMRpro Ambassador in reply to Hidden]

It is in use in a clinical study in Leeds - so approved by a rheumy and ethical committee there.

[Hidden in reply to PMRpro]

So so pleased to hear that!!

[susieq051 in reply to maria40]

May I ask what is DSNS I have just been newly diagnosed with GCA and PMR so not familiar with evebrything

[maria40 in reply to susieq051]

Sorry it's the abbreviation for a slow reduction plan for steroids and means 'dead slow nearly stop'; it guides you week by week on a slow reduction plan which has really helped me. You should be able to download it from this site. But as you are newly diagnosed you shouldn't need it for a while yet. Good luck!

[susieq051 in reply to maria40]

Thank you Right now not complaining too much about the prednisone I finally managed to sleep now for 3 nights in a row for 7 hours of sleep this is an accomplishment.

[Hidden in reply to susieq051]

It usually used by people on 10 mg and under. The normal method means overnight you go from say 10mg to 9mg. This doesn't suit a lot of people who get steroid withdrawal - fatigue and pain. So they try the tapers set out below.

healthunlocked.com/pmrgcauk...

[SheffieldJane]

Fingers Crossed. Who knew that this last little stretch would be so hard? Still there shouldn’t be much in the way of side effects. Has your doctor explored whether your knee and shoulder pains could involve any other conditions?

[sealine30 in reply to SheffieldJane]

I regularly have blood tests and and my gp has been fairly good, especially if i push a bit, so my vit d and arthritis markers get checked , my vit d is always low no matter how many supplements i take!But with my symptoms always being in both knees and both shoulders its always attributed to pmr,

[PMRpro Ambassador in reply to sealine30]

Have you ever had a course of very high dose vit d?

[sealine30 in reply to PMRpro]

Yes. Over a 3 month period. Small improvement seen that quickly dropped back again. Done this 2 or 3 times now

[PMRpro Ambassador in reply to sealine30]

Strange - what level have you managed to get to? I know others who have required several lots of high dose vit D to get the blood levels up.

And have you had a dexascan - you are at higher risk of developing osteoporosis.

[Longtimer in reply to sealine30]

I am the same...always on the bottom of the scale for Vit D....take it now by Adcal which is dissolved...due to a build up of a potential stone....😕......even that gives me stomach gripes sometimes.....

I have to request a blood test once a year.....feel like a hypochondriac asking for it.

Hope your flare eases soon...

[Hidden]

As you know it's always up and down. Me.. Dx2016.. had been at 6mg for 12mths and flared... Did 10mg for 3 days then went to 7mg. Have been at 8 for a week but back at 7mg to see what happens. I suspect given I have a series of stressful events on the horizon I may have to listen careful and if I need 8mg I will take it.

It's disappointing fo many when the dose fluctuates upwards but at the dose you are on you may as well take what works. 🌻

[sealine30]

Stopped adcal d3 years ago as my bone scans were shining like fairy lights and they kept asking me if i was taking other meds for bones because the readings were so high

[Lochy in reply to sealine30]

What do you mean, may I ask? Did the Adcal cause you problems? Don’t think I’ve ever had my vit D checked as my GP insists all of us living in Scotland will be deficient! I take my Adcal and my vit D drops.

[sealine30 in reply to Lochy]

No problems with the adcal. I think it was just the assumption by doctors that if you take pred you must take a calcium supplement whether you need it or not. I may need it in the future but certainly not now based on the results of the last bd scan

[LemonZest11]

Oh I really hope you have stopped it!! I played around with .5 increase at 4 mg, when symptoms returned for me. Waited too long and tried 5, 7 and now at 10mg. After 3 weeks I'll have a blood test and if all looks good, begin the taper again. Glad you acted promptly. 🤞

[PoisonedinAus]

Fingers crossed for you

[Llarmel]

I am 68, diagnosed 2.5 years ago, started on 12.5mg think I’ve managed to get down to 5mg recently but feeling the symptoms in my arms every morning even lifting cup of tea. So hard to reduce below 10mg. Reading everyone else’s stories just keep you going and hoping.

[PMRpro Ambassador in reply to Llarmel]

If you are suffering at 5mg and keep going - it will get worse until you end up in a real full-on flare.

[Llarmel in reply to PMRpro]

I do take 6mg on the odd day if it seems bad. It’s just my arms hurt when I wake up till I’ve taken the pred but nowhere else. I shall stay on the 5mg for a couple of months before I try to reduce to 4.5. Thank you for your reply, so good to know there are others in the same boat.

[KCRoyals]

Hi, went down from 5mg to zero after my physio said there were no signs of PMR. Big mistake. Had to go back to 10mg and taper down. Kept on 3mg for 3 months without any evil effects and am now trying 3mg and 2 mg on alternative days. At present seems okay although my ESR is 25. By the way the Physio says not to take any notice of ESR but concentrate on CRP which is always at normal levels.

[Hidden in reply to KCRoyals]

Is that the same physio whose advice caused the flare? Did you just drop from 5mg to 0? Not a good thing to do to the body at all. I would be ignoring them not the numbers! The numbers should be controlled by the pred anyway. If crp in normal range it does t mean pmr gone... Just pred doing its job.

[PMRpro Ambassador in reply to KCRoyals]

And on what basis did a physio, treating a patient on 5mg pred, assess there was no sign of PMR? I would hope that 5mg was plenty to keep any sign of PMR under wraps but there is also nothing at all to indicate to a physiotherapist whether PMR is present or not.

They sound totally out of their depth and not very up-to-date: ESR often works better in PMR, it is the one place it does, but there is a lot of heterogeneity with some people finding ESR works, others find better links when both are used and some see none.

[KCRoyals]

By means of a Synacthen Test. It's hard to find a practitioner who is "totally in their depth" with this complaint, this site excepted.