Newbie to the group.

[Binnie49]

Hi all,

I’m new to the group although 6 months in on a PMR diagnosis.

My symptoms started in April 2020 2 months after as knee injury, both my shoulders at first, I couldn’t even get a cup off the side, couldn’t lay on my side or touch my shoulders. I thought that it was over use. My GP prescribed naproxen and tramadol, which I was taking 8pd of.

I was referred to an physio given steroid injections but still no improvement. They told me I had bursitis in both shoulders but thought that I needed a referral to rheumatology due to the injections not working.

In July 22 my hips started hurting, I struggled to get up out of a chair, bed, toilet, struggled to move at work.

Now stairs suddenly looked like a mountain to climb . Driving was difficult, just getting in and out of a car became a mission. In October I finally saw a rheumatologist who examined me and within 15mins diagnosed me with PMR, gave me 15mg prednisolone, told me I would improve in 3 days. I was sceptical but on day 4 I could move about more freely. My shoulders still were painful but I could walk with bearable pain. I remember thinking wow!! The consultant knew what he was talking about. Then after 2 weeks, I dropped the dose to 12.5mg, the pain was back, the difficulty moving, I was told that I had overdone it and stick with it, 4 weeks later down to 10mg , yet again the struggling

I contacted a specialist and was told that I had to reduce the dose. I got down to 8mg before seeing the consultant. They increased my dose back to 12.5 for another 2 weeks then dropped to 10mg and told me to take naproxen when required.

every time I reduce my prednisolone the pain gets bad. I am now back on 10mg and I feel so exhausted all the time.

I work 4days a week in a travelling retail/ sales role.

I am now thinking of stepping away from work as my job has suffered, I forget things all the time, make mistakes. I put it down to being peri-menopausal but after reading some of the threads could it be PMR! I suffer with really bad headaches and chest pain, could it all be related.

Any advice is much appreciated

[SheffieldJane]

I suspect that this is because you have been under-treated from the start by overly cautious doctors and instructed to reduce before all the inflammation had cleared.

I started at 20 mgs - even 25 mgs is normal - and remained there for 6 weeks, enjoying the relief from pain, stiffness and disability. I then began to taper using the dead slow nearly stop (DSNS) method outlined in FAQs on here. Never reducing by more than 10% of my dose and pausing for longer than 3-4 weeks if I began to have a return of symptoms.

Oh Binnie how the heck were you holding down a job? Especially one that is so physically and mentally demanding. You really do need to realise that you are significantly unwell and that you need to lighten your activities and rest a lot.

Peri-menopause was the pits for me. At my time there was a lot of controversy around HRT, I would take it now, definitely.

Wishing you well and a wise knowledgeable doctor. X

[Nextoneplease]

Hi Binnie 😊

I couldn’t agree more with SheffieldJane. It seems likely to me that your dose is too low, and has been reduced too fast. I also don’t like the sound of your headaches and chest pain. Have you reported these to your GP or rheumatologist? If not I think you should do so. We don’t want to be ill, but sometimes treatment is needed…..don’t, whatever you do, undersell your symptoms.

On the other hand, if you enjoy work, is it possible to negotiate a different role, that involves less travel?

All the best to you, will look forward to hearing how you get on x

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Agree with others, probably not a high enough starting dose, or too quick a reduction, or most likely combination of both. have a look at this intro post which should give you more help of how to get through your illness -

healthunlocked.com/pmrgcauk...

If you are continually flaring it's a sure sign things are NOT being controlled...so you need advise from a doctor [whether GP or specialist] who has a better understanding.

If you want to continue in work, this gives details of what your employer should be doing to help you and your illness -

citizensadvice.org.uk/work/...

[Binnie49 in reply to DorsetLady]

thank you so much for the links. My work have offered to reduce my hours.

I’ve booked an appointment with the GP about the chest pain. I will update you.

I didn’t realise the amount of support that I would get when I posted this. Suddenly i don’t feel so alone.

I cannot express in words how grateful I am. x

[DorsetLady PMRGCAuk volunteer in reply to Binnie49]

Good you feel a bit less alone……it’s why we are here… always! We

[Body_bonkers]

It is a nightmare for us perimenopausal ladies. Just started my PMR treatment too but dose was 40mg with miraculous initial improvement. It was reduced too quickly however so having to start again. Chest and shoulder pain were my earliest symptoms but do also look at GCA for headaches. Just few weeks ago I thought my career was over with financial ruin my future but feeling a lot more hopeful now. It’s a time when life adjustments do have to be made but not all are bad. Haven’t sussed my cognitive issues yet (not responded to hormonal treatment) but learnt that steroids may have an additional impact now too

[PMRpro Ambassador]

You count as atypical - you are young-ish - and you were right to be sceptical, you were lucky to improve in his 3 days, at 15mg lots would take 3 weeks to get a dramatic improvement. Then you are being rushed off the dose you need before you are ready. And to boot you are working - and it is obvous if you think about it that people who work are likely to "overdo" things and need a gentler taper and probably a higher dose.

Both pred and PMR (all autoimmune disease in fact) can cause brain fog and make working difficult. It does improve as your body gets used to pred but it takes time. Travelling as I assume you are is tiring and that doesn;t help the brain much either,

[Mayadill]

Oh the horrifying pressure to reduce that is basically hot air with no basis in fact to the obvious detriment of your life. Tell them Mayadill was on 10 mg for nearly a year! No, I didn’t think that would do any good. I was well and happy. Sure I tried intermittently to reduce. I was less well and happy. OK, dear PMR, when you’re ready, try again later. Have to say I didn’t really contemplate tablet-cutting, 0.5 mg, 0.25 mg, but that of course was because I felt no pressure to reduce. Regular bloods and BP monitoring, an HbA1C, by standard criteria I was fine. No-one would have been cutting up tabs faster than I if I’d had deranged liver function or something, an obvious medical reason. It makes me so cross. Don’t tell me you noticed…Doctors are supposed to help you be well, not add to your problems. So there’s the question: have you any evidence, Doctor, that my current dose of Prednisolone is adversely affecting me? Or are we talking about something you misunderstood in medical school 20 years ago? Got back on track finally, 9, 8,7, 6, 5.

[orangemax]

Hi, Binnie49. I've been dealing with GERD (reflux disease) for years, prior to my PMR diagnosis. Of course, any chest pain needs to be checked out, but if you're hearts okay, it could be reflux. And reflux and heart attacks are similar in nature as far as pain is concerned. I get these attacks, even though I take both a ppi and an H2blocker every day. The reason I'm telling you this, is because prednisone is known to exacerbate this problem.