New to PMR

[Trentside]

I just wanted to introduce myself and to say thank you for the wealth of information and advice from those on this forum. I was given a diagnosis of PMR by my GP about 6 weeks ago after hip and groin pain started in December 23 and then moved to my neck shoulders and waist area in January. I started on 15 mg of Prednisolone for 3 weeks then 3 weeks at 12.5mg. I’m just about to reduce to 10. To be honest, I’m still in a state of shock that this has happened to my body. I thought I was in pretty good health. I’m really not sure how I would have coped without the help here so thank you to all who have posted and replied.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

I know you have saved my intro post so won’t attach that as I do usually, but do have a look through the FAQ and maybe at this link re PMR - if you haven’t already-

healthunlocked.com/pmrgcauk...

[Trentside in reply to DorsetLady]

Thank you very much. I will.

[DorsetLady PMRGCAuk volunteer in reply to Trentside]

..and remember there’s always someone around if/when you need help…

[Koalajane]

hi and welcome.

I think the diagnosisof PMR is often a shock, although to me it was a relief as it was an illness I was told would go into remission in 2 years( a myth I soon discovered). It was also a life changing illness and not a life threatening illness. It took about 3 months for my diagnosis as other things were ruled out first.

You will learn so much from the wonderful people on this site.

Another thing I would say is don’t rush to taper too fast and stay at each taper for 4 weeks if you can. My doctor now leaves me to alter my dose as I feel as she says I know my body best,

[Trentside in reply to Koalajane]

Thank you. I have already learnt so much and realised that the wise way forward is to move slowly and at the rate that is necessary to keep things under control whilst hoping to achieve some progress. I have a telephone app with my GP next week to review things so will discuss tapering with her.

[PMRpro Ambassador]

Hi and welcome now you have appeared on the scene. You obviously know how we work - so see you around.

[Trentside in reply to PMRpro]

Thank you and also for all the advice you have put on this forum.

[Charlie1boy]

As a follow up to Koalajane’s post, it is frequently recommended on this forum not to reduce by more than 10% of current dose, even though this may contradict some Rheumatologist’s tapering advice. This is especially relevant after you get below 10mg a day.

I also endorse what Koalajane says about staying on each dose for a good four weeks. Looking back on my experience, I often stayed at some levels for well over four weeks, and never reduced if I felt any symptoms ( even a little amount of pain).

Hopefully you will get on ok. You may find your patience is tested, but, if you keep in touch, you should find answers to any queries you get.

[Trentside in reply to Charlie1boy]

Thank you. I am hoping my GP will be receptive to slower tapering. I had never met her until about 2 months ago but am optimistic. I really want to be off Pred as soon as possible and it’s clear from most of the advice that slowly slowly is likely to be the fastest way.

[PMRpro Ambassador in reply to Trentside]

You will get off pred when the underlying autoimmune condition has burned out and gone into remission - and there is abslutely nothing you can do that will influence that and speed it up. What happens with fast tapering is that you allow flares to occur - you aren't heading relentlessly to zero, you are looking for the lowest effective dose for the longer term. That results in more pred overall and just making it all harder. Slow and steady makes the risk of flares less - and means a better QOL.

[Trentside in reply to PMRpro]

Thanks. That really does put it into perspective. It really is a different sort of illness to others.

[PMRpro Ambassador in reply to Trentside]

Maybe that's what confuses the medics!!!

[Doraflora in reply to Trentside]

Hi Trentside. Welcome to our group. We’re all a friendly lot and we have some great “experts” among us!

We all want to be off Pred asap, but sadly it doesn’t work like that. We have to follow our body and, as others have said, don’t be in a rush to taper too soon.

Since I was diagnosed 4 years ago,I’ve had a couple of attempts in the past to reduce, but this time round I’m still dropping by 0.5 mg at a time, but staying on a dose for at least six weeks. I’m nearly down to 2.5 so 🤞this time. Good luck!

[piglette]

You may like to know that there is also a group of us who get together on facebook.com/groups/6288051... to talk about gardening with PMR and GCA. You don’t need a garden to join!

[Trentside in reply to piglette]

Thank you. Advice would be welcome along with a smaller garden!

[piglette in reply to Trentside]

You would be very welcome.

[Magster54 in reply to piglette]

Thanks for this. I've just made a join request to the group

[Trentside in reply to Magster54]

Thank you.

[Doraflora in reply to Magster54]

I’ve been accepted into the group too😃

[Sweetpeasoprano]

Welcome to the group. You’ll find lots of help and support here.

As others will say, take it slowly when tapering. Definitely at least four weeks not three between reductions and 10% (not 1mg) at a time. Smaller reductions the lower you go.

[Trentside in reply to Sweetpeasoprano]

Thanks for the welcome. The support has been fantastic. I suppose I am assuming that once (if!) I get down to 9mg, it would be best to follow Dorsetlady’s slow taper down to the next mg below. Would that be the idea?

[DorsetLady PMRGCAuk volunteer in reply to Trentside]

Well, I’m always going to say yes aren’t I?😉… and you may find as you slightly lower you can only reduce 0.5mg a time… but that’s for the future….

You need to be certain in your own mind that each taper has worked before you step down again…and only you know that.

[Trentside in reply to DorsetLady]

I’ll do that and let you know how it goes. Thank you very much.

[PMRpro Ambassador in reply to Trentside]

DL's slow taper is as good as any - though other flavours are available

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Of course there is! And I do usually mention the 2 best ones !😊

[Booch]

I was shocked too. Just woke up with it and was going to gym and yoga 3 times a week. Hang in there. Be positive. Take supplements and keep moving.

[Trentside in reply to Booch]

Thanks. I think I am very like you in the exercise/activity department. I have cut down but not stopped doing exercise as I have bone issues. For the moment I am fine with it but think I’ll have to cut back much more over the coming months. I’m really trying to stay positive and take all the supplements recommended.

[Purplegloss]

Hi Trentside, and welcome. Just wondering what other meds the GP put you on, and if you were given the option of a Dexa scan before you started Prednisolone. So often they put you on Alendronic Acid when you may not need it.

[Trentside in reply to Purplegloss]

Thanks for the welcome. My GP didn’t put me on any other meds. I take atenolol - I was given these years ago as a migraine preventative…..they never prevented them but I no longer have migraines.

I had a dexa scan a year ago as a scan in late 2013 showed I had osteoporosis. I took AA for about 3 and a half years until I had a tooth that needed to come out. No one had mentioned that this might be problematic. It was a year before I had the courage to have it removed at a dental hosp but there were no issues whatsoever. I have also taken Evacal since 2014. I’ve spent the past 6 or so years sorting things out for myself with resistance exercise annd walking and am now osteopaenic. I really don’t want to go anywhere near AA again though my GP mentioned it might have to be discussed if I am taking steroids for any length of time. It’s a bit of a dilemma.

What has been your experience ?

[Purplegloss in reply to Trentside]

It sounds as though you have turned your osteoporosis around, so well done. I have been on Prednisolone for 6.5 years now, and took alendronic acid for the fist two years without having had a dexa scan. I didn't like the idea of continuing with it, and developed osteoporosis anyway. The dexa scan I had a few months ago shows that it has become worse with hips mild osteoporosis and spine severe osteoporosis. I was going to start prolia injections, but decided against incase I had the many side effects that often come with it. I do take vitamin D 2200iu and also K2 tablets. Lots of whole milk yoghurt etc. I have also upped my walking to every day now, rain or shine. I am 80, and think probably most women my age have osteoporosis in some form, and I feel very well with PMR currently under control on 3.25mg. I do know this can change but this time I am reducing at .25mg using the slow method so fingers crossed.

[Trentside in reply to Purplegloss]

Well done you for going out every day. That’s better than I have managed in quite a while. I think you’re quite right about most women eventually having osteoporosis. Many just never know. We just have to make sure we stay upright …. Fingers crossed your tapering keeps going well.