Update on 45 yr old PMR sufferer

[Underlee]

Hi,

As I have posted a few times recently on my PMR journey I thought it may be of interest (maybe!) to update you on my current progress as I'm an "atypical" case. I'm a 45 yr old male and I suddenly started suffering from very sore and painful muscles predominantly in my legs. I ended up in hospital for two weeks whilst the doctors tried to work out what was wrong with me. My inflammation markets were high (ESR = 90, CRP = 137), I had night sweats and pain in my legs which made walking very difficult. I also lost 2 stone. I had always been fit and healthy so this came as a massive shock and bolt out of the blue. Towards the end of my hospital stay I was put under the care of a great rheumatologist who thought I may well have an atypical and aggressive type of PMR. I was given 20mg of Pred to take daily and it certainly perked me up a little but had nowhere near the miraculous effect I have read on other posts. I was still stiff, suffering pain and night sweats. After a couple of weeks I went up to 30mg (which I split into two doses) and has helped a little more. As my response to the steroids was not remarkable I had an petscan, EMG test and a muscle biopsy on my thigh. The results came back that there was no muscle diease but there was acute inflammation which strengthened the view that this was PMR. Over the past week my stiffness has eased a fair bit and I am a lot more mobile. I have the sweats intermittently and the pain in my legs has not woken me up for the past couple of nights and I've recently cut down to 25mg Pred. I'm also on an anti inflammatory diet (no gluten, no dairy, no refined sugar) which hopefully is helping too. I'm slowly starting to put a little weight on and feeling nearly much more positive. The main message I wanted to get across with this post was that if you are unsure that you have PMR because you do not fit the "criteria", push to get under the care of a good rheumatologist who is prepared to look outside of the norm. Thanks for taking the time to read this

[Celtic PMRGCAuk volunteer]

Lee, much better news from you - I'm so pleased, and what a relief for you and your family.  As for being under the care of a good rheumatologist, you are certainly under one who can think outside the box....and does.  We need to clone him!

[Underlee in reply to Celtic]

I totally agree Shirley!!

[DorsetLady PMRGCAuk volunteer]

Hi Lee,

Glad to hear that things are beginning to get a little better for you. 

One thing you learn with these pesky illnesses is never to give up, but it would be nice at times if life were a little easier! 

Ahh well, onward and upward as they say! 

[PMRpro Ambassador]

Good to hear from you - and all very interesting. Do please ask your rheumy to consider doing a case report on you for publication because we feel we are bashing our heads against a brick wall with a few concepts you illustrate beautifully: age, atypical presentation and dose. I like his concept of "aggressive PMR" - I hope he'll write more...

Do please keep us informed of your progress.

[Underlee in reply to PMRpro]

Of course, sounds like a good idea to me. And thanks for your help and wise words over the past two months. 

[Runrig01 in reply to PMRpro]

Hi PMRPRO, I attended a general rheumatology support group yesterday, run by a fantastic rheumatology nurse. We got chatting and she informed me that they are generally finding "younger patients" typically present with a much more aggressive form of pmr. When discussing my GCA tongue symptoms she said in her 20yrs she has not come across a case like mine with clots and areas of tissue grey/ white. She told me I should remain under the care of Leeds, because if she hadn't seen it, it was unlikely her consultant had. She did suggest she could act as a local "go between", re my treatment and help with future biological treatment  if it comes to it. A productive afternoon. 😃X 

[PMRpro Ambassador in reply to Runrig01]

Oh good - someone sane at last near you!

Honestly - it has been said for years that WHEN it happens in younger patients it tends to be "atypical". Atypical means it doesn't tick their beloved boxes. What I know find interesting though is that younger doctors are becoming a bit more open to the questioning and it is the established ones who pull their woolly hats down over their blinkers. Not that it helps us particularly until you can find a broad minded doctor!

[Newquay]

Hi 

Sorry your having such a bad time, but sounds like it's getting a bit better.

I hope it continues for you. What part of the country you in.

My question is how do you find a good specialist, I went to see one last week, he was nice doing scans on my joints more blood tests, but he said that my scores of ESR 28/19 where not high at all and that he wouldn,t be concerned if it was 80. 

Not sure what my CRP was, but I have been left confused as people on here have readings under 10 but still got polymyalgia and GCA.

Any advice welcome.

Glynis.

[HeronNS in reply to Newquay]

The first GP to look at my blood results dismissed them completely as not being high enough to be relevant to anything, although in retrospect I now understand that I was presenting with completely classic symptoms of PMR - no "atypical" symptoms at all.  A couple of months later a different doctor looked at exactly the same test results and said the inflammation markers, coupled with my symptoms, warranted further investigation.  One week later I had my diagnosis.

[Underlee in reply to Newquay]

I'm in Surrey and was just lucky that the rheumatologist who saw me when I was in hospital was very good. I can't advise on how to find a good one in your area but I'm sure there are people on this forum who could advise that are in your area. Good luck in your search. 

[Newquay]

Well how did they diagnosis it then just off your symptoms.

[HeronNS in reply to Newquay]

The pred trial - classic response of complete remission of pain within a couple of days.  She also ran some other tests, I'm assuming to make sure there was nothing else going on.

[Newquay in reply to HeronNS]

Hi I went on pred for a couple of months which helped a lot but didn,t take all the pain away, and I landed in hospital sent my stomach into spasaming so I came off them.

I will just wait and see what happens.

[HeronNS in reply to Newquay]

Newquay, that sounds very unpleasant.  How are you feeling now?

[Newquay in reply to HeronNS]

Hi again lol.

They gave me a stomach proctor put a camera down my throat, I have seen inside my stomach and it's not a nice site.

I came off pred and just been coping with the pain while waiting to hospital. 

Any if you ready all post you will know I have been and having more tests and been to have my eye tested today and she sending me to eye specialist.

But as for how I feel all I can say is totally exhausted stiff sore like my arms are on fire. Weak been like this for weeks  just hanging in. 

Nothing much more I can do been given some gabapentin but can't take till after blood tests on Tuesday.

One thing I I would like is to go to bed and wake up feeling like I have had a sleep.lol

[HeronNS in reply to Newquay]

I saw the inside of my stomach many years ago.  I'd imagined the stomach as murky green and was quite startled to see it was red!

[Newquay in reply to HeronNS]

Hi well I was very surprised to see how pale my was to what it was years ago it looked anaemic

I felt sorry for it.lol.

[trish29]

Good Morning Underlee..I'm so pleased that things are improving for you ..We spoke at the PMR GCA of Surrey meeting ..I was sat in front of you and your wife..everyone at the meeting felt for you. I am also with your kind Rheumatologist and wish I'd met him a long time ago.I hope you continue to feel better and continue to get down on the steroids and better night's sleep ..All best wishes ..Pat ..( trish 29)

[Underlee in reply to trish29]

Thanks Pat, lovely to hear from you. I'm glad you've met with Rod Hughes as he has been a great help to me. I feel as I am slowly making progress, in fact I slept through last night without waking in pain or having a night sweat for the first time in two and a half months. Hope you are doing ok. Best wishes, Lee

[PMRpro Ambassador in reply to Underlee]

I still get night sweats after 12 years...

[Underlee in reply to PMRpro]

Is that every night PMRpro or intermittently?

[PMRpro Ambassador in reply to Underlee]

Until this recent flare it was occasional but at present it is more nights than not though not every night. It is a bit difficult to tell if it is the pred or the PMR because the pred I take releases overnight so it is high at the same time the cytokines are released - but there is a definite pattern to the worse ones which are like an alarm clock at about 4am.

[trish29]

That's such good news Underlee..A good night's sleep is so necessary with this condition . Yes I have been with Dr Hughes  2 years or more now and we are trying every trick in the book where my PMR is concerned ..not straightforward ( trust me to be awkward) . Take care and continue on the upward path !! Best wishes  trish 29

[Hidden]

Hi Underlee, 

I am glad that you finally have your diagnosis and that your Rheumy was so thorough. I hope your improvement continues.