Advice please. Just don’t know where to go from here on pred dose.

[Loyd]

Diagnosed with a PMR March 2019. I’m a 69 year old female living in Scotland who has never had any health problems before. After trying to taper way too fast because of fear of Covid19 - I got down from an initial pred dose of 15mg to 3mg but had a massive flair and my doctor put me up to 10mg which made a 60% improvement. I then decided myself to go up to 171/2mg which helped a lot though not 100%. The doctor wasn’t happy and wants me to taper again so now down to 15mg. But lots of pain over shoulders and hips again! Also fatigue.

My question is - should I stick at 15mg and hope it will become better by it’s self or should I try going up to 20mg for two weeks and come down more slowly next time? Would really appreciate any advice from anyone who has experienced this. Many thanks in advance.

[PMRpro Ambassador]

Try to see a different doctor who will agree to your going back to 20mg and getting it all under control again. It is very common for it to be hard to sort things out after a flare due to overenthusiastic reduction. How good was the pain relief at 15mg? Did you have raised blood markers at diagnosis? If so, what are they like now?

If you are stuck with this doctor, point out to him it is your pain not his and since he doesn't appear to understand PMR you would like to be referred to a specialist. You won't be able to taper until the existing returned inflammation has been cleared out - you are back at the start again and he has to accept that.

Have you been in touch with the Scottish PMRGCA charity?

pmrgcascotland.com/

[Loyd in reply to PMRpro]

Thank you PMR pro. When I first had symptoms I had inflammation markers but they disappeared and haven’t been tested recently. My initial diagnostic dose of 15mg was miraculous but now 15 months later I’m on 15mg again coming down from 17and a half mg and have bad pain and fatigue. Not easy seeing another doctor. She is very nice but just wants me off steroids. I’m tempted to try 20mg but worry it won’t necessarily work and then what do I do? 😩😩 PS I’ll check out charity - many thanks.

[PMRpro Ambassador in reply to Loyd]

They should disappear - it shows the pred is doing what it should do. And they need to be checked now you have symptoms - if they are there, you are not on enough pred.

Can you get her to discuss sensibly WHY she wants you off the only medication that will manage your symptoms? Is she not aware of that fact? There is no other option. Is she aware that inadequately managed PMR is more likely to progress to GCA? Which will mean a much higher dose of pred or you run the risk of total and irreversible visual loss. And does she know that the median duration of pred management for PMR is just under 6 years? Only 1 in 5 patients is off pred in a year, a third in 2 years. For 2/3 of us it lasts a longer time - and having had it for 5 years without any management because it wasn't diagnosed I can tell the lady it brought me to my knees not only due to the pain but also depression due to the disability and isolation it brought with it. The potential adverse effects of pred are peanuts compared to suicidal thoughts.

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

The link to the original work is at the end of each article.

[Loyd in reply to PMRpro]

Thank you again. Yes I will go back to her and see if she’s happy to put me up to 20mg. Does sound like you have had a very bad run in with this dreadful disease. I’m sorry for that. I certainly don’t want to get GCA!! Thanks for taking the time to reply - means a lot.

[PMRpro Ambassador in reply to Loyd]

That's why I am here - in the hope of saving others what I went through. I'm not the only one though - I got off lightly.

[Loyd in reply to PMRpro]

I had never even heard of the wretched disease 18 months ago!! Now reading all this on here it’s incredible people suffer so much and there’s really doesn’t seem to be much research into it.

You really do help people with good advice. 👍👍👍

[PMRpro Ambassador in reply to Loyd]

There really is quite a lot of research going on all over the world. But it isn't the dramatic stuff that makes headlines and we have always said it has been perceived as a disease of older women - there is this image we are all over 70! So retired and not economically significant. Just go and sit in your rocking chair and knit ... Now it is appearing in younger people who are still working together with the raising of the retirement age it will become of more interest.

[Loyd in reply to PMRpro]

Be brilliant if they discovered what caused it and a more healthy medicine to treat it! 🙏🙏🙏🙏🤞🤞🤞🤞

[RichardC in reply to Loyd]

Hi Loyd,

Please do make contact with our charity - the Helpline number is 0300 777 5090. There you will find a knowledgeable team who can give information and guidance. They will also give you contact details for the most convenient of our Support Groups which are based in Aberdeen, Dundee, Edinburgh, Glasgow and Inverness.

[Loyd in reply to RichardC]

Thank you so much Richard. I will. X

[yorkieme]

I'm not sufficiently experienced to comment on dosage levels but I do have a similar experience regarding the advice given by my G.P. and my decision to ignore it by taking less than advised. It is your body of course and you will always have the final say but if you feel your G.P. is supportive then you should work with them.

My decision caused me a great deal of grief but I have now learnt the importance of going with rather than against.I seem to recall I received a couple of boots up the backside from the experts on here.

In my case I think that my actions interfered with their plan of action so I had to start again.

So,good luck getting it sorted.

[Loyd in reply to yorkieme]

Thanks so much for that. Very helpful. Looks like I’ll have to start again.

[SheffieldJane]

I prefer your 20 mgs option. In my experience PMR rarely rights itself. I admire the way you take charge. I just wish you had a clued up doctor in your corner. Scotland seems to be managing comparatively well with Covid. I would stay safe but concentrate on getting my inflammation under control. Any scope for another doctor in the practice?

[Loyd in reply to SheffieldJane]

Thanks Jane. It would be hard to see another doctor in the practice without me looking bolshy and she has been really kind and just wants me off steroids. I assume I don’t have much to loose just trying 20mg for 2 weeks? It can only improve the symptoms and then I can try to go down more slowly. My only worry is what to do if it doesn’t make a difference. Yes Scotland has done well - 6 days no deaths and almost no one in intensive care. Everyone breathing huge sighs of relief. Hope England follows suit.

[PMRpro Ambassador in reply to Loyd]

She isn't being kind if she is rushing you off pred too soon.

[tangocharlie in reply to PMRpro]

All GPs and most rheumatologists too are absolutely paranoid about how much harm Pred can do us. Based on that thought that must have been drummed into their heads at Med school they rush us off it asap - but we have an illness that only responds to Pred and gets worse if the steroids are withdrawn while the illness is still raging. The biggest problem we have is in educating doctors how this disease works. I am satisfied after many years on Pred that it hasn't caused any major problems, I don't have osteoarthritis or heart problems. The Matteson study which is widely circulated in all sorts of medical journals concluded that apart from cataracts we are no worse off than the general population and Pred may even have a protective effect, an idea that warrants further research. But I am now on a higher dose of Pred than I was at the very beginning 8 years ago. And I firmly believe that is because I wasn't on a high enough dose for long enough to manage the PMR thanks to ignorant doctors getting me from 10 to 5 in 6 months and rheumatologists saying even 5 was too high after 3 years and telling me to get off. I really don't know why they pick on Pred as being evil yet happily prescribe all sorts of other more harmful drugs for years without querying.

[Loyd in reply to tangocharlie]

Thank you for that. Very helpful. I agree we need more studies on the dosage, harm or indeed good that pred can do. It leaves us all not really knowing what’s best. Wow 8 years is a long time! Wishing you the best.

[PMRpro Ambassador in reply to Loyd]

I've had PMR symptoms for well over 15 years. Been on pred for 11 years now. I too suspect the long time without any management has a role to play - no idea why but a lot of us who were ignored or badly managed early in the disease continue to struggle for one reason or another.

[PMRpro Ambassador in reply to Loyd]

BTW - SOME would do as they can't have MORE, as far as I know they haven't done any yet!!!!!

[PMRpro Ambassador in reply to tangocharlie]

MY cardiac problems are associated with the autoimmune part of PMR - and are definitely worse when I flare and am not on enough pred.

[tangocharlie in reply to PMRpro]

I'm told my heart and lungs are fine yet I get chest tightness and swollen feet, ankles and legs which looks like pitted oedema when I'm not on enough Pred - when I am on a higher dose these all disappear but come back if I reduce. The D-M injections worked fine until I was forced to reduce the dose and went into flare and I'm now back on steroids on top of the injections. I'm hoping a PET CT scan next week will shed some light as I despair at the thought of going up to 20 Pred a day, 10 days of it that my rheumatologist ordered to get on top of the flare was enough to remind me how horrible the side effects are. Once that crash course was over, which worked miraculously, sure enough symptoms are back.

[PMRpro Ambassador in reply to tangocharlie]

Yeah - I was told heart and lungs were fine. Until I had a drug reaction to i.v. diazepam: atrial fibrillation, Couldn't be ignored, I had a heart rate of 230 and was in hospital! And then, once that was treated, those old problems that no-one could identify had gone. The same happened with the bradycardia - couldn't find anything. Until they gave me i.v. diazepam to calm me down after a fall and a TGA event with the same result: severe a/f and tachycardia but with bradycardic events with pauses of up to 7 seconds. A pulse of 9 isn't to be recommended, even for a few seconds Pacemaker inserted and those funny waves of dizziness are a thing of the past!

[tangocharlie in reply to PMRpro]

I get a rapid heart rate sometimes from some meds and foods but I put that down to the histamine intolerance things rather than than the heart itself. There is always a specific trigger for me.

[Loyd in reply to tangocharlie]

When you went up to 20mg for your flare how slowly did you come down to 10mg? Or are you down to 10mg now?

[SheffieldJane in reply to Loyd]

She sounds approachable. Tell her just how awful the pain and stiffness is, don’t hold back. Honestly, they really don’t know unless they’ve had it. Then it is quite a different story as people have occasionally testified on here.

[Loyd in reply to SheffieldJane]

I will do that and hope for the best. Many thanks. 👍

[tangocharlie in reply to SheffieldJane]

That's a top tip

[Gumnut]

Hi Loyd sorry just seen your post and hope that your symptoms have resolved. It does seem a massive jump from 3mg to 15mg. I am 69 too and finding it very difficult to get below 4mg. I've been on 4 for months. Went down to 3mg 4 days ago and in tears today as all my symptoms back😢. So I sympathise. Bilateral hip pain, nausea, lethargy and no stamina. I get confused. Is this PMR symptom or Pred withdrawal. Or both? My rhuematologist discharged me 6 months ago! Left to manage my case! I will go back up to 4mg and hope its enough. I am not an expert but maybe this might work for you? To maybe go up to 5mg if 3 not helping? I have stopped getting notifications of posts. Please can anyone help. Take care everyone. Glyn

[PMRpro Ambassador in reply to Gumnut]

Have a look at your Settings via the Profile page. Sometimes things on the notifications selection get unselected - HU claim it isn't them but it often happens when they have changed something!!

[Gumnut in reply to PMRpro]

Thank you.