savage flare

[Reddev]

I have just a rather savage flare. As bad as first diagnosis. My CRP 46 ESR 56. I have been unable to walk very well or raise my hands above my shoulder. I can now do both. I have been taking 10mgs prednisolone for the last 6 days. Do you think it would be ok to go down to say 5 mgs. Or should I stay at 10 for another few days and reduce from there. Thank you.

[piglette]

If you now feel fine and have hit the PMR on the head you can think of reducing, perhaps do it in two steps rather than one. The first step being just above the final one. If you feel you still have a flare just stay put.

[Reddev in reply to piglette]

thank you. I forgot to say I was on 3 mg prednisolone before the flare. So maybe wise to go to 5 and see how that goes.

[piglette in reply to Reddev]

sounds sensible if you were OK on 5mg.

[DorsetLady PMRGCAuk volunteer]

This link gives general advice on dealing with a flare …and you should be able to reduce to 4 mg -not 3mg -but might be wise to do it in 2 steps -

healthunlocked.com/pmrgcauk...

[Reddev in reply to DorsetLady]

thank you. Have read the link. And I think I’ll stay on 10 for 10 days and then try 4. I think I have done too much for 3 mgs to cope with. Hence the flare.

[DorsetLady PMRGCAuk volunteer in reply to Reddev]

Definitely not down to 3mg, as that’s where the issue was…and I would do 2 steps… firstly to 6mg for a 4-6 days, then to 3mg…

🫰

[Reddev]

even better.

[PMRpro Ambassador]

What dose were you at when the flare happened? After such a severe flare I think dropping from 10 to 5 after such a short time is perhaps a bit optimistic. How are the symptoms after a week on 10mg compared to before the increase?

[Reddev]

I was on 3mgs. The improvement after 48 hours was wonderful. Felt back to my normal self although the right shoulder still had some discomfort but I put that down to my sore shoulder anyway. Today I went out for a walk and felt ok.

[DorsetLady PMRGCAuk volunteer in reply to Reddev]

Good, but don’t be in too much of a rush to scamper back down -make sure all okay.

[ChoralG]

Personally, I would consider not reducing quite so quickly, but remain on the higher dose for a couple of weeks more before reducing again. It would be a shame to initiate another flare up so soon after hitting it on the head.

[Reddev in reply to ChoralG]

thank you. I know you are all giving me good sound advice. Such a shame when I was getting closer to what I was hoping was the end. I’m feeling so depressed and weepy at the moment. I’m sure I’ll bounce back.

[DorsetLady PMRGCAuk volunteer in reply to Reddev]

Understandable-but unfortunately that’s life sometimes….you will get there 🌸

[Boulesplayer]

I would take it down 1 mg at a time

[Woodly]

I have taken prednisolone since July 2016 (primarily for GCA) and have always followed the Rheumatologist's advice and occasionally my GP. I have never varied the suggested dose off my own bat. In your situation, I feel sure that the specialist or your GP would suggest what needs to be done.

[Reddev in reply to Woodly]

unfortunately no. I have had PMR & GCA since 2018 and not once has a doctor told me to reduce. In fact one GP put me on 40 mgs prednisolone and would have left me there until I saw my rheumatologist which was 5 months …. Not a good length of time to be on that high a dose. I looked up the nice guidelines and followed there instructions.

[Woodly in reply to Reddev]

I am very surprised you have been on a high dose for so long. Health professionals I have dealt with all aim to get you off them but emphasise that it must be done slowly. Although you only see the consultant every six months or so is it not possible to make contact through his/her secretary or by Email?

[PMRpro Ambassador in reply to Woodly]

Then you have been exceedingly lucky in the HCPs you have seen. Most of the time GPs, in particular, want to get patients off pred the way they use it for a flare of RA or asthma - quickly and in very large steps. And if you never get to see a specialist - which some 75% of PMR patients don't, what else would the average patient do if the GP also goes AWOL as has been the case for nearly 3 years.

[Gillyb39]

I've been told to taper down by 1mg at a time. I do this monthly and have never had a flare-up!

[Rozzyt]

I would consult your doc about coming down very gradually, normally 4 weeks on 10mg then 9gms, reducing every 4 weeks by 1mg is what my doc has told me. You have to be closely monitored by blood tests to see if inflammation has come down. I was put back upto 15mgs as at 3mgs I could hardly walk after 9months coming down everything was swollen and very painful from my neck down to me knees, but after 3 days it's like a miracle, I have to stay at 15mgs for a month then gradually and slowly come down small steps at a time. Please speak with ur doc first. Take care.

[Reddev in reply to Rozzyt]

seems to me that the three mgs of prednisolone is the danger point. I have been on 3 mgs for a month or so and now full blown flare. So slowly does it now.

[Randolph1]

My experience over some years is that you must reduce your daily dose very, very slowly. I have previously reduced by 1 mg every 2 months and am currently doing so every 6 weeks. Good luck!

[Zampalion]

I am sorry have seemed a long time since I managed too overcome pmr was a nightmare whilst I had it I reduced my reliance on pred.by reducing my pred monthly’s with the help taking methotrexate took 6 years to complete my journey please perceivere

[Reddev]

thank you I will.

[dahlia68]

I have had my first bout of polymyalgia this year, and although I initially made progress, my dose was reduced too quickly and my symptoms soon returned, worse than before. My GP has considerable knowledge of the condition, and since then I have been reducing dosage very, very slowly, always under medical advice. Very glad to report that I have been "well" for over a month, and I am now down to 9mg a day, remaining on this dose for one month then down to 8mg daily. Obviously we are all different, but I find this very slow decrease seems to be helping me. I do hope you feel better soon, don't rush things.

[ab58sf in reply to dahlia68]

I AGREE Dahlia68. Reducing slow and steadily by1mg might work. I must be the only one experiencing the bones popping and creaking! Something else must be going on. Rheumatologist is not addressing it.

[PMRpro Ambassador in reply to ab58sf]

Joints popping is a very common feature and rarely a serious problem.

[ab58sf in reply to PMRpro]

Thank you!

[Whippetygirl in reply to ab58sf]

I too have the bone popping sensation in my shoulders my physiotherapist said not to worry about it, it does not hurt just annoying.

[Reddev]

thank you. I have been reducing by 0.5 of a mg every month but have probably gone to low to keep the polymyalgia under control.

[Kagal]

I’d suggest you stick with 10mg for a week before you think of reducing. A

[Reddev in reply to Kagal]

yes I will thank you for your help.

[Misseyj55]

you need to follow your doctors orders . But I had a recent flair up and took 15 for a few days (3)then reduced it by 1 Mg per day to 10 … I maintained the 10 for a week and now I’m back to 9 that’s been for 2 weeks now , I see my specialist on Tuesday and will let him decide where to go from there. Hee we says never reduce the lower doses by any more than 1/2 to 1 Mg over a period of time which can be months . The pain has subsided to a dull ache of about 3/10 and I’m able to move about again and the swelling associated with the pain has also subsided as I have visiblely less swollen areas . Go by what you are feeling and talk to your specialist or doctor. If you don’t have a specialist then my advice would be to geg a referral to one as soon as you can. My doctor managed me for nearly 12 months on and off prednisone because I do have other health issues, he knew he wasn’t making progress while waiting to see the specialist, now seeing the specialist I feel much more in control of my pain situation when it flairs. I know all the side affects of pred. I’m no longer concerned as I want quality of life and I need my sanity as well without the pain, I’m 67 so if that’s a guide , I hope this helps 💐 Good luck with it all it’s not a nice to have that’s for sure ….

[Reddev]

thank you.

[Misseyj55 in reply to Reddev]

hi reddev I’ve had another rebound and back on pred . I feel it’s an ongoing process now and am back on 14 Mg Pred as a reducing dose over months to come . It’s a tough gig but I’ve accepted pred is going to be around. Thought I would drop you an update cheers

[Chickswim]

What is your ALT? That’s the one that seems the most important. I always reduce very slowly. So I would start by going to 9mg and see how you are on that. What does your consultant say? Mine gets very upset with me if I take things into my own hands, although I often do! Good luck.

[Chickswim]

So sorry - I have autoimmune hepatitis . I’v only just realised that this is PMRGCA. Please ignore my comment. I have had PMR and GCA and I was always told to reduce very slowly. In fact the comment is valid except for the ALT.

[Reddev]

I have been reducing very slowly over the last 4 years. Dropping .5 mg every 4 weeks once I reached 10 mgs. Can’t do it very much slower.

[PMRpro Ambassador in reply to Reddev]

You could take longer to drop the 1/2mg - many people use the slowed tapers and repeat each step once or more.

However - however slowly you reduce the dose NOTHING will get you past the dose you are aiming for, the lowest effective dose, the lowest dose that gives the same symptom relief as the starting dose did. You are never reducing relentlessly to zero. There comes a point when you start to feel the PMR again - and you stop tapering, maybe go back one step (which is why small steps are better).

[Reddev in reply to PMRpro]

Will I ever get off prednisolone?

[DorsetLady PMRGCAuk volunteer in reply to Reddev]

You have just as much chance of getting off Pred as the rest of us - but you’ve had a bit of stuttering. Think the fact that you were off Pred within 2years was a mistake first time around - as you discovered when PMR/GCA resurfaced.

The total time you’ve been on Pred is around 4 years -and that’s not unusual -despite what you may read online or be told by some doctors.

Many are on that long, some a lot longer with PMR.

With my GCA, I was on Pred for over 4 years -but add in the time prior to diagnosis - and it was nearer 6 years from first symptom to last Pred. Although had it been diagnosed and treated earlier, I may have recovered earlier.

[Reddev in reply to DorsetLady]

yes I think the first two years after diagnosis was relatively uneventful. Had a reasonable quality of life. But now with covid lockdowns and the ageing process it’s taking it’s toll. I’ll just have accept and take it slowly.

[DorsetLady PMRGCAuk volunteer in reply to Reddev]

yep -all you can do really….

[PMRpro Ambassador in reply to Reddev]

DL's said it all - many are on pred for 4 or 5 years or more but still get off eventually. It just depends how long the underlying autoimmune cause of the symptoms we call PMR keep active. But life on pred needn't be too bad.

[Jocelyn344]

much good advice, do not take too large a drop in dose

[48er]

hi frankly after almost 4 years on Pred (aged 70 & not on any medication whatsoever) i can safely say i feel worse now than i did before i was diagnosed with PMR and wish i had never started to take it. i started on 30mg and felt a new woman but immediately the medical advice is taper taper, so once i hit 20mg all symptoms came back. I now have had my health totally ruined by this medication, High blood pressure, high cholesterol, weight gain, low levels of vitamins. I am now on 4 mgs and feel awful, but cant wait to be free of Pred altogether - sorry i cant be more positive

[PMRpro Ambassador in reply to 48er]

If the symptoms returned at 20mg - it might raise the question whether you have "just" PMR.

[48er in reply to PMRpro]

Under investigation by baffled rheumatologist for the past 8 months

[Mlangston]

hello, I’ve read through most of your replies and of course the first thing that springs to mind is how varied all the advice is and what a minefield this condition is! Speaking from personal experience I did have a flare after 18 months when I was nearly off Prednisone which set me back to the beginning again and from then on I took things very very slowly so it was 6 years before I was clear having reduced at the end by 1/2mg per week!! But it worked for me and that is the challenge with PMR, you have to find what works for you. But I have been in remission for 6 years now so there is light at the end of the tunnel! Stay strong and you’ll get there. Best wishes, Maureen

[Nosirrok]

hello Reddev, re your query about reducing your prednisolone dose.... I'm not an expert, just a Pred-taker, but I learned from others on this site that the best advice is to taper VERY slowly and not reduce by more than 10% eg 1mg or even .5mg every 4 weeks. I tried to taper more quickly and when I reached 5mg I had a flare up. Therefore, I increased the dose to 7mg for 4 weeks, then 6.5 for 3 weeks, then 6.25 for 3 weeks now on 6mg and feeling fine. I have read that very slow tapering is more important when single figure doses are reached. My GP suggested reduce from 7.5mg to 5mg and 'take the risk' but I've stuck with the advice gleaned from this site. I hope it goes well for you.

[Reddev in reply to Nosirrok]

thank you. I will try again to get down to 3 mgs very very slowly. I was doing so well. I don’t know how where or why this flare happened?!?!?

[PMRpro Ambassador in reply to Reddev]

It doesn't matter how slowly, how carefully you taper, there comes a point you won't get beyond until the disease activity underlying the PMR reduces further. You aren't heading relentlessly to zero - you are looking for the lowest effective dose, the lowest dose that works as well as the starting dose did. Overshoot that lowest effective dose and you will get a return of symptoms as the left-over inflammation builds up.