What should I expect?

[Dorsetdame]

Hello, this is my first post on your very helpful site. I’m 67, diagnosed with PMR November 2021. Started Prednisolone on 40 mg last December, GP reduced dose every 2 days by 5 mg until I was on 10mg by 16/12. Then dropped 1 mg every 2/3 days.

Symptoms returned by the time I’d got to 4mg, so I increased to 5 mg fora month. Had a flare up and went up to 8mg, stayed on that for 2 weeks, and felt fine. My GP ( a different one, as previous one had left) reduced me by 1mg every 2 weeks until I was on 6 mg but then I had 10 days of fatigue and shakiness. She thought it was a virus.

By March I was on 5 mg and at the end of April on 4 mg. On holiday my arm pains returned quite badly so I increased to 5 mg. I’ve remained on 5mg up to now but to be honest my arms are still rather heavy and painful when I raise them. I’ve noticed a return of some discomfort at night too and stiffness when I get dressed,

But it’s not as bad as it was originally. So after all that ( sorry for rambling) I guess I would like to know this…. Should I be expecting perfection at all times , with no pain at all, just as it was when I took Prednisolone for the first time.? It was miraculous and after a day or so it felt perfect. Or do I accept a certain level of discomfort in order to get off the steroids? At 67 I know I would experience some aches and pains after a day gardening, for example.

[Dochaz]

As a "newby" with GCA, I had a lot of the same questions and uncertainties. This group is the best for getting a perspective on things. It's hard to tell whether aches and pains are due to tapering and the body getting used to the lower dose of Prednisone or to over-doing physical activities or to a potential flare of the disease. I am 3 months in and beginning to stress less now! Best of luck 🌼

[Dorsetdame in reply to Dochaz]

Thanks Dochaz, much appreciated.

[Koalajane]

There are many that know far more than me but I am amazed at the dose you were started on and the way you have been instructed to taper.I started on 15mg and tapered by 10% monthly. So by the time I got to 10mg my taper was to 9mg and then by .5mg. I have been on prednisolone for 5 years and got to 4mg when I had a flare. I increased to 9mg and am slowly tapering now. Please read all you can on here and carry on asking questions but when you taper you should be feeling as you felt on your miraculous first dose!

[Dorsetdame in reply to Koalajane]

It seems amazing that GPS vary so much with the dosage given. Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Dorsetdame]

Guidelines say "12.5mg to 25mg" - most seem to opt for 15mg.....

[Longtimer in reply to Dorsetdame]

I am amazed but not suprised, I have never seen such a fast drop!.....look at the F&Qs....I think you need to show your GP some of lowering regimes!.....to find what's right for you....

[Kendrew]

Hi Dorsetdame

Look in FAQ'S but here's a link to get you going:-healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

What a very odd treatment plan from 1st GP -obviously no idea of how to treat PMR.Second one not a lot better -much more likely to adrenals stuttering at 5mg than a virus!

I know Dorset is sleepy and laid back but if that’s where you live (name?) that’s abysmal treatment from surgery.

If PMR why 40mg start dose ? That’s GCA territory -was that suggested?

Think you need to have a read of this for your own peace of mind -

healthunlocked.com/pmrgcauk...

This also explains adrenals -

healthunlocked.com/pmrgcauk...

Bit more info on profile would be helpful please

[Dorsetdame in reply to DorsetLady]

Thanks for the links, I found the info on adrenals very interesting. I knew none of it.I’m near Bridport, West Dorset, so fairly sleepy!

Your replies have given me the confidence to challenge my GP when she calls me next week. I’m going on holiday so don’t want to reduce any more yet. To be honest I felt I was doing well on 7 mgs, and any reductions since then have caused problems.

Only have PMR, nothing else, so have no idea why I was started on 40 mgs. No other health issues at all, I’m lucky.

[PMRpro Ambassador in reply to Dorsetdame]

Cousins live in Whitchurch Canonicorum - and my niece in Uplyme ... Nothing sleepy about the second. WC is another matter!

[Dorsetdame in reply to PMRpro]

Nearly bought a house in WC, we’re near Beaminster. Small surgery but very pleasant.

[PMRpro Ambassador]

Hi and welcome.

No, not perfection every time BUT I would say you are slightly too low for what you are looking for: the lowest effective dose that gives the same result as the starting dose did. PMR is a chrnic condition - get off the steroids now and with a very short time you will be back where you were pre-pred.

If it were me, I would take 10mg for a few days and drop straight back to 6mg. And stay there for a month or two. Then try 1/2mg very carefully - one of the slowed tapers.

However - that is a very bizarre approach to managing PMR with a very peculiar tapering regimen. You have been lucky in that you obviously haven't got a very aggressive level of autoimmune disease at present. As for "it's a virus" - don't get me started!

[Dorsetdame in reply to PMRpro]

I thought that about the ‘virus’ as well! Thanks.

I wonder how the GP would respond if I asked her to take a look at the tapering plans you have linked on your site? Anyway, I feel more confident now in discussing it with the GP, so thanks everyone.

[DorsetLady PMRGCAuk volunteer in reply to Dorsetdame]

two versions of similar plans -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[123-go in reply to Dorsetdame]

Hello Dorsetdame. This is just a suggestion if you do decide to talk to your GP about the forum.

There would be no harm in asking your GP if you may send her a couple of links to the PMRGCAUK charity that Professor Dasgupta, a reknowned rheumatologist, was excited to help found some years ago. Say it was set up to support patients by connecting them with others who have had lived experience and for new patients to understand what was happening in their bodies........ and also to raise awareness.😉 Say that you would like to know her thoughts. If she doesn't want to know, then maybe she's not the GP for you ☹️. No pressure but here's a link that talks about the charity's vision and what they do:

pmrgca.org.uk/about-us/what...

[Dorsetdame in reply to 123-go]

I might just do that. Thank you.

[piglette]

My gosh where did your first doctor learn about PMR? I cannot believe they read it anywhere. No wonder you have pain, your dose is too low at the moment. The others have recommended some good posts you can look at.

[Dorsetdame in reply to piglette]

Thanks piglets, I’m going to read it all and get myself better informed. Then I’ll be well armed to discuss with GP.

[piglette in reply to Dorsetdame]

It is so sad when you hear of doctors causing their patients unnecessary pain due to incompetence. You should be in the same position you were when you first took steroids. Also a reduction every two weeks does not really give you time to know if there is a problem. Four weeks is much better and also at your current dose around 0.5mg a month I would have thought.

[Longtimer in reply to piglette]

It is sad....but the ignorance of it makes me angry!.....especially if you are in pain and challenge them...and they don't like it....but why not.....arrogance again..We seem to be seeing this so much now....

[piglette in reply to Longtimer]

As they say “Common sense is like deodorant. The people who need it the most never use it. “

[Longtimer in reply to piglette]

Haven't heard that before . ... Love it....so even in this heat...no deodorant!..😂

[PMRpro Ambassador in reply to piglette]

Also not very common!!!

[Carriemetz in reply to piglette]

Oh how true! I shall remember that one! 😆

[GrandmaPirate]

It's my personal believe and my rheumy agrees that you should stay on the lowest possible dose of prednisolone at which you feel well, can move well your arms and shoulders. And then very slowly after feelings well for a month or even2, you diminish the dose, e.g. from 5 to 4 mg a day. There you stay again for a month or even longer and then another decreased of 1 mg/day. When you are in this way at 2 mg/day, your next tapering need to be even more careful e.g. on Wednesday and Sunday 1 mg/day, other days 2mg/day.Ir all right in that way for 1 month, move to alternating days 1 mg and 2 mg/day. Then if you are still fine you may decreased again to 1 mg/day except on e.g. Wednesday and Sunday 2 mg/day. That's where I am now and my rheumy advised to stay there during my holidays in order to avoid a flare up. In 2 weeks I will decreased to 1 mg/day when still symptom free. Maybe I will stay a long time on 1 mg. My rheumy said it would not cause harm. You better go very slowly down instead of going up and down because of flared. Good luck. I feel really fine, walk 10 km/day, use my bicycle, do pilates 50 minutes/day and use to do indoorrowing 30 minutes/day when weather is too bad outside. I am 75.

[Dorsetdame in reply to GrandmaPirate]

Really appreciate your replies. I was at my best on 7 mg so will ask (tell) GP next week that I want to go back there, and then taper much more slowly I think. I’m going away too so don’t want a flare. Thanks everyone for your help.

[Longtimer in reply to GrandmaPirate]

No way could I drop 1mg at a time, especially below 10 mg....lucky if you can.....has to be half mg at a time and very slowly over a few weeks......we are.all different, pity a lot of GP's don't remember that....

[Carriemetz]

Sorry u’re having problems - but I must say I’ve never heard such a weird reduction schedule as u were given, though older hands on here may have! It sounds far too fast and no wonder u are now suffering the results of it. I hope u can reach a good, slow, reduction that suits u! There is one! It’s just a question of finding it. Look at the links given on this very gd forum. Unless u are very lucky there may always be a little bit of pain/discomfort/tiredness as u progress, but listen to yr own body, rest when u need to, and go by that and if u feel uncomfortable - don’t reduce for another week or two! Nothing is lost if you dont! In March, after 3 years with GCA/pmr I at last stopped steroids and am slowly getting to enjoy my ‘new normal’. There are things I can no longer do - but I can do plenty and enjoy it, so ‘Excelsior’ However, I know it wd have been a much longer journey without the support of a good rheumatologist and, as importantly, of this forum. I’ve found everything on here, even the weird pad of fat on my right collarbone that still wont go away!

U will certainly get to the other side in the end but don't rush it, or let yourself be rushed. The medical profession isn't as clued-up on this condition as it shd be. Always come back and check in with Dorset Lady and PMR Pro and all the rest of the ‘old contemptibles’ who actually know what’s really what - and then make your own mind up! Best of good luck. Carrie

[Dorsetdame in reply to Carriemetz]

That’s such good advice thank you. I feel empowered already!

[cranberryt]

I will just add that if you taper too quickly and while experiencing pain, you will likely end up with far more flares and on steroids at much higher doses long term. It is far better to slow down, drop by 1/2mg as symptoms allow. And once you get under 7mg, the pressure should be off as the side effects doctors fear should be minimal at that point.

[Dorsetdame in reply to cranberryt]

Thanks cranberryt. Very helpful advice.