Not the answer I was expecting: This is just an... - PMRGCAuk

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Not the answer I was expecting

JulieR2 profile image
17 Replies

This is just an update on my recovery or transition to another condition. Despite the issues I still had 4 years after diagnosis I thought I was in the recovery phase of PMR. I am still getting pain but this is limited to certain joints and general stiffness. My GP referred me to the rheumatologist again. I have to say he was thorough and examined me carefully. The outcome is I have psoriatic arthritis.

To be honest I am still recovering from the shock. I have never had psoriasis or so I thought. I have now realised that the ridges in my nails are nail pitting! Not just bad nails😀 my scalp also isn’t normal. These two tell tale sign confirmed diagnosis. So methotrexate for me.

The rheumatologist did say I have progressed to this from PMR?? It’s Definitely feels different. Just wondering if anyone else has had this. Not that I want to frighten anyone but thought mine is a cautionary tale.

Do I now have to leave the lovely PMR family and find a psoriatic arthritis group😢

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JulieR2 profile image
JulieR2
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17 Replies
123-go profile image
123-go

I am so sorry to hear this, Julie. PA is something I've not heard of. It seems that you are in good hands and I wish you well with your new treatment.

MrsNails profile image
MrsNails

Hi Julie

No of course you don’t have to leave us but you may benefit from joining another Forum on here called ‘Beyond Psoriasis’ & stay with us too 😉

Interesting that the Rheumatologist said it was a progression from PMR

Wishing you Good Luck 🍀

Best Wishes

MrsN

JulieR2 profile image
JulieR2

Thanks so much. Yes I am going to follow that up. To be honest I was a little shell shocked so it didn’t all sink in😀

PMRpro profile image
PMRproAmbassador

You don't have to leave us - for anything that is common to both, the advice will be similar. We have a couple of people who have neither PMR or GCA but there aren't forums for their conditions and they were already here because it was supposed to be PMR.

The second fairly useless rheumy I saw wanted it to be psoriatic arthritis - despite never having had ANY sign of psoriasis or nail ridging etc at all. But once you can specifically say you have joint problems I think it must be considered whether this is/is still PMR.

I'm less convinced by the "PMR progressing to PsA" - more I suspect that having one autoimmune disorder predisposes you to developing another. Though my personal image of a/i disease could mean just add-ons to the PMR mechanism, does that count as progression? Semantics maybe ...

powerwalk profile image
powerwalk

Goodness. My nails have been shockingly ridged and dents in them. Always had nice nails, put it down to pred. Will keep an eye on them. Did you have different symptoms, new pain? Sorry to hear that, just no end to it sometimes. Hard to know whats what a lot of the time. I know, also have fibro and ME, everything gets muddled. I hope you get some treatment that helps you.

PMRpro profile image
PMRproAmbassador in reply to powerwalk

As I keep saying - you have powerwalk-syndrome ...

powerwalk profile image
powerwalk in reply to PMRpro

Pmr syndrome, never ending!!

SheffieldJane profile image
SheffieldJane

I think I swerved this diagnosis by not drawing attention to the fact that I have pretty bad Psoriasis on my feet. I treat it with base cream every day and occasionally a low dose cortisone cream. This keeps it under control and my feet look mostly normal, if a bit dry. I am not sure that a doctor saying the diagnosis would change anything except my mood. Stay with us Julie and keep moisturising. I don’t take Methotrexate. 😕

JulieR2 profile image
JulieR2

Apparently I also have red ridge in my hair line. The symptoms are different. I have joint specific problems in two fingers my knee and my shoulder. So different to PMR which felt more sudden. I have had steroid injections in both hips and shoulders which helped. But was fed up of being generally stiff and in pain... I am hoping the methotrexate works. I know that it won’t be pleasant but being pain free would be so nice.... I don’t think I have been in the last 4 years.

PMRpro profile image
PMRproAmbassador

"In the spondylitis group there is great disdain for pred. For that reason there are many more options for treatment"That isn't the reason for there being more treatments for spondylarthropathies - the mechanism is known to involve tumour necrosis factor - and there are 5 different anti-TNF biologics which do work very well indeed. If they knew where the key is to PMR, they could design drugs for it. They can deal with the IL-6 pathway but it isn't the only one.

JulieR2 profile image
JulieR2

Thanks I will stick around and let you know how I do. Oh our immune system eh! Yes I think I am with you. I have hypothyroidism too so guess I am just getting a range of auto immune conditions 😀 I am thinking that if I don’t respond well I will need to retire. The last 4 years have Ben such a struggle.

PMRpro profile image
PMRproAmbassador in reply to JulieR2

I can recommend early retirement ;) Even with PMR or inflammatory arthritis you have the energy left to do something other than work - get ready for the end of Covid restrictions to make the most of it :)

PMRpro profile image
PMRproAmbassador

That is NOT what I meant - the reason there is a choice of medications for RA etc is because the mechanism is known. There isn't a known mechanism for PMR.I am not the only person who says that about tcz - but the background is not that I disappove of it but because it too is NOT A CURE,

PMRpro profile image
PMRproAmbassador

I'm talking about a biochemical mechanism - and in RA there are several, several different biologics have been developed and the chances are one of them will work, at least for a time. But if the mechanism developing the damage is the TNF path only a TNF inhibitor will work. If it is IL-6, only an IL-6 inhibitor will work. And you can't use 2 biologics at one time. Humira is a TNF-inhibitor - it won't work for PMR/GCA.

PMRpro profile image
PMRproAmbassador

I was trying to explain a principle.

Thelmarina profile image
Thelmarina

Love the idea of a deranged immune system. Madness! 😂

survivalist profile image
survivalist

Same problem here got told I have PA but that doeskin mean you didnt have or dont have PMR

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