Newbie

[Crumb1]

Hi Everyone

Have had a recent diagnosis of PMR from, GP. Started me on 15mgs pred for twelve days with little effect. Pain in shoulders ,neck , arms and wrist and also pelvic area , legs and ankles. Then he increased dose to 20 mgs, daily now on that for almost three weeks, there is improvement but still in pain, of course up until about 1pm the worst. Have always been active, walking , exercise classes. I am 61 and carer to my Mum who is 98 and lives with me. I am seeing specialist tomorrow after GP made an urgent referral. What should I be asking? Am so grateful to have found this forum and would be pleased for any advice, Thank you

[Celtic PMRGCAuk volunteer]

Crumb, I'm sorry to hear that you have been diagnosed with PMR and that the steroids do not appear to be achieving much resolution in your pain at present.

The first thing you need to ask your rheumy is whether all other possible conditions have been ruled out via relevant blood tests, as there is no definitive test for the diagnosis of PMR and it is therefore a diagnosis of exclusion.  Many people do find that they have raised markers of inflammation in their blood tests (ESR and CRP), but it is still possible to have PMR with normal markers.

You say that now on 20mg, there is an improvement.  Only a few very lucky people become pain-free on commencing treatment and down through the doses - the rest of us can usually expect around a 70% improvement within a few days to a week.

It is also very common to experience early morning pain and stiffness - it means that the effect of your dose of steroids taken the previous dose day has not lasted the full 24 hours.  Some people find that splitting their dose, taking two-thirds in the early morning and the remaining third in the evening can help with this morning pain.

Many people diagnosed say that, like you, pre-PMR they were very active.  Importantly, you now have to take on board that you have a condition for which there is no instant cure - the steroids just damp down the inflammation until PMR goes into remission and that can take anything from two years upwards.  Meanwhile, and especially in the early days of treatment, it is essential that we learn to pace ourselves and not go overboard trying to do all that we did prior to succumbing to PMR.  You will need to rest as much as you can at this stage especially to allow the steroids to do their job of getting control over the inflammation and keeping it there.  I appreciate that this might be very difficult for you as you are the main carer for your Mum - is there anyone else you can get on board, at least in these early weeks of treatment, to help?

It's a good idea to write everything down and take with you to your appointment - your symptoms pre-diagnosis, your symptoms now - plus any questions you can think of in advance.  If PMR is confirmed, then you will need a daily calcium plus Vit D supplement (taken a few hours apart from the steroids), a Vit D blood test to rule out any severe deficiency in which case an additional Vit D supplement will be needed, and a DEXA scan to rule out any present sign of bone thinning (Osteoporosis).

I hope at least some of the above helps.

 

[Crumb1 in reply to Celtic]

Hi  Celtic

Many thanks for your advice, I did indeed write a little synopsis down of my lifestyle, symptoms etc, as my appointment is ten am and we live eighty miles from the hospital, and mornings are of course not good, so I thought better to have some preparation in case I feel really rotten by the time we get there. I will take on your  thoughts also about rest as this is something I think is hard to accept mentally too. Mum is trying to be as little work as possible but of course it is difficult but I am going to get some help by extra respite in our local care home 

Thank you for taking the time to reply, I do appreciate it and will post how I get on

[PMRpro Ambassador in reply to Crumb1]

Without pacing and rest you will continue to struggle so it is important to get your head around it. I do appreciate the problems you have because of being a carer - but in some ways, your need of a carer is greater than your mum's at present. Not quite what you expected though is it?

I do hope you have a fairly decent morning - there is a basic problem here: you need to look "bad" for the benefit of the doctor but that just makes getting there even more difficult! I can't imagine getting 80 miles to the hospital in the morning - we would have gone over the evening before! Where are you based - obviously somewhere pretty rural!

[Crumb1 in reply to PMRpro]

Hi

Thank you for reply,unfortunately could not leave Mum overnight and too short notice for cover. We are in south west Scotland so actually are nearer Belfast! We will need to leave at 8am, so will no doubt succeed in looking 'bad'. I know that is good advice, about resting,I realise by reading all people's experiences here that I have to listen and learn. As the saying goes 'life is what happens while you're busy making plans'

[r-o-y-1]

Hi Celtic, sorry to hear about your diagnosis. I was diagnosed in early in  September last year and had severe pain in the mornings and also used to be extremely active, gym most days etc., and running my own busy business. . Following advice  on this forum and my wife constantly telling me I need to rest I finally accepted I couldn't carry on as before. So I slowed down , only work afternoons now, (thankfully I am able to make that choice), stopped travelling all over the country to see clients,  do lots of walking and gentle exercise and importantly started to take all my pred last thing at night, having previously tried splitting the dosage. I am now almost pain free in mornings other than some pain in biceps and have gradually come down from 20mg to 11mg. So I think it is about finding what works for you as each person is different but definitely I think the combination of the above has so far worked for me.

Good look Celtic and I hope your condition begins to improve.

[Crumb1 in reply to r-o-y-1]

Hi r-o-y1

Crumb 1 here. Thank you for advice. I saw specialist this morning and was quite shattered after 80 mile journey, but she was lovely, so thorough, had chest X-ray ,bloods etc. Has booked me in for Dexa scan? I think that was the name. Tests from GP have ruled out other diagnoses she said so it seems pmr is correct. She is leaving me on 20mgs pred for another week and then reducing to 17.5mgs , and is sending me letter with plan of action she said. Having read your post seems sensible and measured attitude is really important, so I am learning. Am now off for a rest!

[r-o-y-1]

It does work- just accept it and go with the flow- good luck with the reduction but take it slowly- someone quite rightly said to me it is not a race to get off pred!