PMR diagnosis

[Hightower62]

Hi, this is the first time posting on this platform as I have just had a diagnosis of PMR after four years. (I am not complaining as I realise it can be extremely difficult to diagnose with all the complexities of autoimmune conditions)

I became very unwell in January 2020 and was hospitalised with a CPR OF 337 which meant nothing to me at the time but obviously explains why I was so unwell. I had terrible pain in my legs initially along with excruciating pressure headaches where I couldn’t even sleep lying down and had to spend my nights in a chair.

Things gradually improved when I was prescribed Prednisolone, initially at 60mg then tapering off until I came off Prednisolone completely after around 28 months. I had however been put on 20mg MTX one a week after around 3 months which I remain on and understand will probably take for the rest of my life at some dose as even though my bloods have been stable for a considerable time. I guess my disease is still active with the main issues being significant fatigue and stiffness generally but particularly in the mornings and mainly in my shoulders. I had a Rheumalology appointment recently which had been delayed by 12 Months so hence the new diagnosis of PMR which strangely feels like a relief as my diagnosis previously was unspecified inflammatory disease which isn’t particularly helpful with travel insurance applications and medical questionnaires generally and I feel is much better psychologically.

As this diagnosis is relatively new, I have been doing a little research as I am keen to know as much relevant information as possible. I have been reading that PMR is usually treated with Steroids but there doesn’t appear to be any mention of MTX so am wondering whether there are others in the same position as myself taking MTX solely or whether my medication may have to change. (The Rheumatologist just advised reducing the MTX to 15mg per week as my disease is relatively well controlled).

Apologies for the long post, I would be grateful for any responses.

[PMRpro Ambassador]

Hi and welcome! I was 5 years - and I presented with textbook symptoms except I was only 51 and my blood markers weren't out of normal range.

Well obviously that "unspecified inflammatory disease" was GCA and someone must have suspected that to start you on 60mg pred. You were very lucky not to lose your sight but it also sounds to me as if you had very extensive disease encompassing LVV (large vessel vasculitis) as well - and PMR symptoms can often be part of that - you score a full house as described in this paper which has pretty pictures too!

academic.oup.com/rheumatolo...

Finally it is dawning on the people that matter that they DO all belong together, some of us attended (online) a meeting in Londen discussing it last Friday and this paper is from one of the groups represented there:

pure.rug.nl/ws/portalfiles/...

I would say that your disease is very active and inadequately managed on the MTX without pred. It would probably be worse without the MTX but except for a relatively small proportion of patients MTX doesn't often entirely replace pred, however much doctors say how wonderful it is and they would rather take it than pred. They are very keen to introduce it for anyone who struggles with tapering at all. When it works, it works well - but that isn't the point if you still have symptoms. Relatively well controlled isn't good enough for me. Do you know what your ESR and CRP are like? To be off pred entirely in 28 months is pretty quick - but as I say, I don't think PMR has finished with your and if it were me, I would be making it clear you have symptoms because the other crucial paper in the last few years is another from Dejaco (who just happens to be my rheumatologist) about the aim in management of PMR

ard.bmj.com/content/83/1/48

Ask if you have any specific questions or don't understand anything and we'll try to help.

[Hightower62 in reply to PMRpro]

Thank you so much for taking the time to reply and with so much information. It is interesting that you mention LVV as the notes from the consultation now state that my diagnosis is PMR with likely LVV. My ESR and CRP levels are currently within the normal range and thankfully have been for many months.

My latest appointment was just over 2 years since my previous one (12 months overdue) and there is no mention of any follow up appointment on my notes which is disappointing even though my bloods are currently good.

Thank you again for all the information, I will definitely be reading the content from the links you have included with great interest.

All the best, Elwyn

[PMRpro Ambassador in reply to Hightower62]

We've had a lot of practice linking symptoms to diagnosis! More than some doctors. If I had both - I wouldn't be entirely satisfied with just MTX, it really doesn't have a record on its own though it is used in LVV along with pred these days,

[Hightower62 in reply to PMRpro]

Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Hightower62]

the notes from the consultation now state that my diagnosis is PMR with likely LVV.

In that case you definitely need more than MTX… and as PMRpro has said a very quick taper first time around… and just because blood are currently good, doesn’t mean everything is okay … they aren’t the be all and end all that some believe.

[Hightower62 in reply to DorsetLady]

Thank you.

[meelfyn]

Is your Methotrexate dose taken in tablet form?

[Hightower62 in reply to meelfyn]

Yes it is, I tried injecting for a few months but I lost my nerve after bending a needle and having a few episodes where I felt significant pain injecting and also bruised and bled a few times. I realise this makes me sound like a bit of a baby! 😂

[meelfyn in reply to Hightower62]

Get your GP or consultant to prescribe Metaject an extremely simple way of taking methotrexate. You get the full dose into your system . The tablet form is not the best way the full dose is not always fully absorbed

[Hightower62 in reply to meelfyn]

Thank you.

[AtopicGuy]

Thank you for filling in your profile, which is excellent. It certainly looks as if - after properly ruling out infections, etc. - you were initially diagnosed with a very serious and widespread form of autoimmune vasculitis. It would seem that, after a long struggle on high-dose steroids and steroid-sparing methotrexate, you are now left with PMR as a residual. The cause of PMR is not well understood, but it is also believed to be a localised form of vasculitis, largely due to its connection with GCA. Far from having yet another disease, it would appear that patches of the same inflammation stubbornly remain. Hopefully, things will continue to improve.

[Hightower62 in reply to AtopicGuy]

Thank you for your reply which is much appreciated.

[Ann1A]

Hello, you were interested in other peoples experience with prednisalone and methotrexate....I have PMR which began about 5 years ago, I was treated with prednisalone 40mgs which quickly reduced symptoms, within 2 weeks I reduced to 20mg and since then a very slow reduction to 10mg, which for about 2 years I have been trying, on a very slow taper, to get below... several times I've had a bad reaction/flare and needed to increase temporarily and then try again. Because of this, about a year ago I was referred to a rheumatologist who put me on 10mg methotrexate weekly, however, I have seen absolutely no improvement from taking it.

Good luck with your research, and finding the best path for you.

[Hightower62 in reply to Ann1A]

Thank you for your reply.