Update, couple of questions and looking for Rheumatologist recommendation

[mpartrid]

Hi everyone,

I last posted around 12 months ago but have been following the forum and reading the posts since then.

As a quick recap I am now 47 years old, I was diagnosed with PMR in January 2022 following a blood test that showed raised ESR and CRP markers. I was fairly active prior to the symptoms starting, I first started experiencing symptoms in my hips and surrounding areas and the symptoms gradually got worse extended into my neck, shoulders and then elbows. By the end of Dec 2021 I was in significant pain and struggling to move. Following a blood test in January 2022 my doctor diagnosed potential PMR and put me on 20mg of Prednisolone. Within 2-3 days there was a major improvement in symptoms and I reduced to 15mg in early Feb 2022.

Since then I have continued to taper and in Dec 2022 I was down to 7mg. Since then I have had a few bumps along the way but by April 2023 I had managed to taper to 4.5mg.

However, I then had a major flare in mid May and I went up to 10mg for 10 days which calmed things down. I then dropped to 7mg and have remained there since and feel OK.

In hindsight, I suspect I tried to drop too quickly between 7mg and 4.5mg and even though I felt OK at each taper point I think my pain levels were increasing but I hadn't quite appreciated it.

Can anyone recommend a good way to track how you feel each day as I struggle to know whether I feel slightly better or worse than yesterday, last week, last month, when I first starting taking pred etc. I do write a few notes each day but wonder if there is a better way, perhaps doing a standard set of movements each morning / evening and trying to score movement and discomfort ??

At the moment I am on 7mg and will try a slow drop to 6 or 6.5mg shortly.

My GP has been very good so far and checks in with me regularly, he has been happy for me to manage my pred levels myself but when I mentioned I had gone back up to 7mg he suggested I see a rheumatologist. I live in the West Midlands and I was wondering if anyone could recommend a good rheumatologist with PMR experience, I am willing to travel. I recall seeing Rod Hughes mentioned a few times.

One last question, when my symptoms are at their worst I get neck pain, it is right around the C7 vertebra is very sore to the touch if I press on or around the joint. This does go away with a higher dose. I know there is no such thing as standard PMR symptoms but does anyone else experience this or does it sound like it could be something else ? Burisits perhaps ?

Thanks for taking the time to read my post and look forward to any thoughts.

Thanks

Matt

[DorsetLady PMRGCAuk volunteer]

Hi Matt,

Not sure you actually need a Rheumy -and trying to see one on NHS is pretty dire at the moment -so it would probably need to be privately.

Until you had a blip st 4.5mg -and you have realised why in hindsight I would say you’ve managed your illness well.

Wondering why GP suggested it, unless he’s one of the “PMR only lasts 2 years” brigade…

Rod Hughes is based in Chertsey - big more info here -

topdoctors.co.uk/promo/doct...

As for keeping notes think most do -in their own way - mainly so they can check what may have triggered feeling less well on certain days etc…

No sure on neck -sorry - but someone will.

[mpartrid in reply to DorsetLady]

Thanks DorsetLady, I do have access to a level of private cover from work so will give some more thought on whether to try and see a rheumatologist

[DorsetLady PMRGCAuk volunteer in reply to mpartrid]

Might just as well give it a whirl in that scenario then..

[LucilleG]

One last question, when my symptoms are at their worst I get neck pain, it is right around the C7 vertebra is very sore to the touch if I press on or around the joint. This does go away with a higher dose. I know there is no such thing as standard PMR symptoms but does anyone else experience this or does it sound like it could be something else ?

If I’ve gone a bit too low on my prednisone (either because I’m tapering or I’ve done too much), the first place I feel any pain is in my neck, around the C7 vertebra. It’s like an early detection warning for me! I can now tell the difference between this feeling due to PMR inflammation and from a regular sore neck.

[mpartrid in reply to LucilleG]

Interesting to know, I will pay close attention and see if it is an early warning sign for me also

[Mayadill]

Hi Matt, body language! I know that's not exactly scientific but i have found PMR is in everything, how I'm sitting, what position my legs put themselves in, whether I'm naturally moving them, twiddling my toes or stretching my ankles. Slightly more scientifically you could do a test-run each morning of the bits prone to pain.

[piglette]

Being a nerd I post my daily dose on a spreadsheet. I also add a colour of red orange or green as to how I feel. It can be quite useful when looking at trends.

[mpartrid in reply to piglette]

Thanks, I will look to create a spreadsheet and if my Excel skills will stretch that far maybe a form to enter the data 😀

[piglette in reply to mpartrid]

You sound more skilled than I am on spreadsheets! Good luck.

[DorsetLady PMRGCAuk volunteer in reply to mpartrid]

I started keeping a diary before I was diagnosed (long story) mainly because I was taking a lot of painkillers and didn’t want to overdose.

I continued with that - transferred to excel s/s with all relevant info during my GCA/Pred times. ..in fact still keep a much watered down version to this day for other health issues…

Like piglette a bit nerdy!.., but only a bit 🤔

[PMRpro Ambassador]

A diary noting dose, activity, diet and symptoms is as good as anything. But what you experienced is pretty typical - you aren't heading relentlessly to zero come what may, you are looking for the lowest effective dose at any given time. The dose you start on is usually too high, so then you titrate the dose by tapering slowly and in small steps to find the right dose for you, now. You need to allow time at each new dose and compare how you feel with how you felt at the previous dose - you shouldn't feel worse. It doesn't matter how slowly you go, you won't get lower than the lowest effective dose at any given tim. It doesn't mean you won't get lower, just not yet, Starting at 7mg and creeping down 1/2mg at a time may get you some lower.

And I also think you probably don't need a rheumy at present UNLESS your GP is getting iffy. In which case remind them that now you also have to wait for adrenal function to return as well - not only keeping PMR in check.

[mpartrid in reply to PMRpro]

Thanks PMRPro, I will definitely start to track things better. I think my GP was just suggesting it as something to consider, I do have access to a level of private cover from work which the GP is aware of

[Kendrew]

Hi there,

Just a comment regarding 'tracking' your PMR status each day.

PMR manifests itself slightly differently in each and every one of us so the issues I decide to monitor or keep an eye on may not be the same as the ones you may wish or need to do.

I began to keep a journal that I filled in daily. I'd write a general piece about my day but also log a few specifics, grading them from 1 to 10. The issues for me were initially:-

- aches & pain levels

- head pain

- palpitations

- acid indigestion

- I wanted to see if certain factors influenced pain levels, such as the weather, what I ate, what I did, amount of sleep, etc.

- I kept experiencing head pain but wasn't sure if it was potentially GCA or withdrawal symptoms with each taper.

- I had a history of ectopic beats that had escalated since starting pred.

- I'd declined omeprazole so needed to keep a close eye on my digestive system.

Monitoring these issues that were specific to me and keeping a well documented journal proved to be very useful on many occasions. For instance, I discovered my head pains did indeed correspond with each taper, and my ectopic beats (palpitations) gradually diminished with each lower dose of pred.

Over time, my 'specifics' have (and will continue to) change as certain issues resolve themselves and new ones occur.

Many times I have referenced my notes and been reassured to read information I'd actually forgotten.... information that reminded me that 'this happened before and was ok'!

Over the past 4yrs, there have been many issues to deal with... most of them small and easy to resolve, but occasionally a couple have proved a little more challenging.

Being able to look back and read about past 'situations' has definitely put me in a better position to manage my condition more effectively now, and absorbing all the reliable & trustworthy advice here has also enhanced this.

So, in summary, I would say there isn't really a 'one size fits all' regarding this and you'll have to decide what's appropriate for you.

The more you learn and research your condition and meds the more able you'll be to make effective choices and decisions.

I hope this has been helpful and wish you luck.

[mpartrid in reply to Kendrew]

Very interesting to hear your experiences and thanks for the reply, I will definitely find a way of keeping track of things, probably via a spreadsheet

[cranberryt]

My neck is generally one of the first sogns I have shot too low on my dose.

[mpartrid in reply to cranberryt]

Glad I am not the only one 🙂