Is it PMR, ? level of GP follow up

[Lorraine786]

Hello all. I am need of some more advice please. I was started on 15mg pred just over 2 weeks ago for probable pmr. My symptoms all fitted, but ESR & CRP were normal . As mentioned in my previous post about timing of pred, I was much improved very quickly but have never been pain free.My GP arranged a telephone follow up for 2 weeks after starting pred which would have been Thurs just gone, but the surgery cancelled it due to staff sickness. The next appt I could make was a further week away. The plan was to confirm the diagnosis or not & discuss what happens next regarding bone protection etc.. I'm probably over reacting, but I have so many worries going through my head, particularly what if it isn't pmr & I've been on steroids 3 weeks? I still have pain every day, not all through the day but for a lot of it.

I've kept a diary & can see that there are definite improvements ie, I can wash & straighten my hair, can put my underwear on without a ridiculous swinging movement to try & get my foot through my knickers, I don't wake up in the middle of the night because of pain in my legs; I can be in the car for longer than 15 mins now without having to 'unfold' myself to get out & there's no morning stiffness. Ever day though I have painful legs its as if my quads are on fire, some days its just for a few hours, others for longer & I really am pacing myself, some days Ive done virtually nothing. I'm also still getting some upper arm pain too & although I'm usually a really pragmatic, calm person I feel like I'm falling apart - I'm sitting here sobbing just writing this. I tried taking co codamol just to see if something else may be going on with no effect. When the GP appt was cancelled I decided to increase my pred to 20 mg & that has had no effect either. I am a nurse, although not this field, but do understand steroids & dosages etc.

Sorry, I've really gone on I suppose I can summarise this with these questions: If it is PMR, is it normal to not get pain free & I just need to put up with it? Would you recommend trying to see the gp earlier with an emergency appt? Thanks for making it this far, Lorraine

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you’re not getting relief you hoped for/expected. Although 15mg is a recommended starting point for PMR, very often it’s not enough. Although a rise to 20mg you would hope it is.

Can I make following points -

a. With the initial improvement on 15mg did you try and catch up on jobs/activities you haven’t been able to do before,

b. Two week at 15mg may not have been long enough to clear all the inflammation built up prior to taking Pred, 4 weeks is a more realistic time to stay on inital dose, 6 weeks even better - although many doctors don’t seem to like that long,

c. If 15mg didn’t do it, you may need to give the 20mg longer to work. For some it’s a miracle - relief in a matter of hours, or days, for others it takes longer. And not everyone gets 100% relief - but if you get 70% relief sometimes thats a more realistic pointer.

b. CRP & ESR readings are not high - around 20% of patients never have raised markers - symptoms are always the key.

By all means try and see the GP earlier, but you may just be one of those that it takes longer to get a result.

Please let us know how you get on - and hope you soon feel better.

[Lorraine786 in reply to DorsetLady]

Thank you so much, I'm very reassured by both your replies. I hadn't tried to catch up with things though - I feel like I've not managed to do anything productive for weeks now but I do think I need to just become a little more patient.

I'll stay at 20mg & wait until the appt on Thurs - I don't have much planned for the next week, so I'll get on with my hand sewn patchwork that I rarely have time to do & there's always Netflix of course.

[PMRpro Ambassador]

I really can't add anything to DL's post. I did get a miraculous improvement within 6 hours - but it wasn't 100% for the pain, the stiffness was the biggest change for me. Where I had bursitis the pain lasted a few months before disappearing entirely.

The 2015 Recommendations say the starting should be the lowest effective dose in the range 12.5 to 25mg. It isn't just the level of disease activity but also the bioavilability: some people only absorb about half of the oral dose whereas others absorb 90%. That is a big difference.

Pred really isn't as bad as you have been led to believe - I haven't fallen apart even after over 10 years at over 10mgs!

[katiemills]

Hi Lorraine , I’m so sorry you’re struggling . I’m not an expert like Dorset Lady and PMR Pro but I had a similar experience to you . I wasn’t diagnosed for probably a year and it was only when I was in a dreadful state was I diagnosed correctly . In October 2018 started on 15 mg . My GP said I would be pain free in a few days so when I only had about 40% improvement I was disappointed and upset . He increased my dosage to 25 mg and I suppose this gave me about 70% relief . He then increased it to 30 mg and then and only then I was totally pain free.

My GP was concerned that I needed such a high dose to be pain free and referred my to a rheumatologist who did all sorts of tests to see if I had anything else going on . I didn’t and he concluded that I was one of those who don’t absorb prednisone as well as others .

I started my reduction following Dorset lady’s tapering plan and had discomfort at 20 mg. when I got to 15mg I was struggling quite a bit so my rheumy put me on methotrexate as well as steroids.

For me , the methotrexate has helped me taper to 9/10 mg . I know it doesn’t suit some people but there are other steroid sparers available.

As I said I’m no expert, but maybe you need to give the 20 mg a bit longer and if that doesn’t make a significant difference , possibly go up a bit more . Then follow a slow taper such as Dorset lady’s or PMR pro’s otherwise you risk having a flare .

Try not to get too disheartened! We’re all here to help you through this and you WILL get better!Apologies for my long reply. Don’t hesitate to PM me if I can be of help .

Best wishes

Katie

[Lorraine786]

Dear Katie, thanks so much for going to the trouble to reply. Although I'm sorry to hear the struggles you have been through, it helps to be able to compare it to my own story & show me that the path we all need to go down can be in so many different directions before we get the the end. I've been out to a Burns night supper tonight & although sore & achy, have come back in a far more positive frame of mind pretty much all due to the support I've found on here x