struggling

[AnniesRyder5]

I was diagnosed with PMR in 2020 and felt that I was tapering successfully until I had a full reverse shoulder replacement in February this year.

i struggled with an immense lethargy so my GP organised various tests. These showed I was anaemic which I couldn’t understand as I eat quite well . After a dodgy ECG I had a cardio MRI which came up with “subendocardial perfusion consistent with microvascular dysfunction “!

The nightmare didn’t stop there because I went to develop horrendous symptoms consistent with rheumatoid arthritis- the pain every morning is unbearable.

I went back to rheumatology who told me my symptoms were down to my age!

So just in the last 7 days my GP has referred me back to rheumatology as an urgent case , the outcome is that I am to be prescribed methotrexate later today having had a battery of tests with no contra indications.

I am not in a good place at the moment- I can’t get out out of bed in the morning without assistance- even brushing my hair first thing is a bridge too far.

All of this in just a matter of months.

The moral of this story is that I feel the MRI exacerbated my symptoms and could trigger similar in other people.

I’ve read up other people’s experience with methotrexate and it doesn’t appear to be the golden bullet does it?

[PMRpro Ambassador]

Hard luck.

To be honest - my immediate question is why aren't they considering this as a relapse of PMR? Have they increased your dose of pred in the short term at least to relieve the pain. And what is consistent with RA and not with PMR?

[AnniesRyder5 in reply to PMRpro]

They just won’t be shifted! And unfortunately I have no pred.

The blood results are so confusing / even anaemia slightly worse.

[PMRpro Ambassador in reply to AnniesRyder5]

Anaemia of chronic illness and often seen in PMR ... Really - it isn;t rocket science!

[Fatsiajaponica]

Just wanted to send my good wishes and hope that you are out of pain soon.

[AnniesRyder5 in reply to Fatsiajaponica]

thank you x

[piglette]

Have you tried increasing your steroids say by 5mg for a week or so to see if that helps?

[AnniesRyder5 in reply to piglette]

thank you - yes I’ve even added 5mg per day - no obvious benefit unfortunately

[piglette in reply to AnniesRyder5]

That could mean that PMR is not the culprit.

[Rynn33]

Sorry to hear that.

I’ve found Methotrexate to be very subtle and it does take a few months to work. I don’t think it deals with acute phase pain so hope they give you something for that as well(ideally Pred if your heart allows).

As per PMRpros point I’m not sure how they can say it’s RA versus PMR and if you’re not able to brush your hair you’d probably need 15mg plus a day of Pred to settle that.

Best of luck

[AnniesRyder5 in reply to Rynn33]

I wish I could get hold of some pred but unfortunately only have hydrocortisone x

[Almostaweed in reply to AnniesRyder5]

I wonder if there is a private GP practice anywhere near that might prescribe Pred? Not saying it would be the right thing, and I wouldn't want you to take any risks as your situation seems delicate. Just an idea.

[PMRpro Ambassador in reply to AnniesRyder5]

Which is next to useless for managing PMR ...

[TinaAird48]

I feel so sorry for you would you try going to A & E they might prescribe Prednisolone . My thoughts are with you for a good outcome & recovery x

[PMRCanada]

So sorry to hear of your woes!

As others have mentioned what you’ve described does sound like a PMR flare. As part of your bloodwork did they test for RF (rheumatoid factor)? I’ve been tested twice for it in the last 6 years, both times negative and no RA symptoms.

I have been on MTX for a couple of years as a steroid sparer and it is working along with pred, to address the inflammation for the PMR, but I doubt MTX alone would be effective.

Hoping you get some relief sooner than later, and perhaps seeing another rheumatologist for a second opinion is in order (if possible). Patients should not have to suffer with such debilitating symptoms. Sometimes we must advocate for our health.

[AnniesRyder5 in reply to PMRCanada]

Thank you and actually they did advise that pred would be more harmful in the longer term

[PMRpro Ambassador in reply to AnniesRyder5]

Very much depends - MTX can have some really nasty adverse effects too. You cannot say that pred is more harmful than MTX as a blanket statement - it must be qualified with sometimes at least.

[AnniesRyder5 in reply to PMRpro]

Thank you

[AnniesRyder5 in reply to PMRCanada]

Thank you

[Booch]

So you think it was the MRI??? I am having knee replacement 8/27 and am terrified. On 1 mg of pred. Were you off pred completely? Why MRI?

[AnniesRyder5 in reply to Booch]

It was a cardiac MRI the purpose of which is to put your body/heart under stress - it was quite unpleasant but a knee MRi is totally different- please don’t worry you’ll be fine .

[Booch]

Thank you so much. I hope you feel better.

[AnniesRyder5 in reply to Booch]

Hi

I took my first dose of 8 methotrexate tablets today so I’m hoping for some improvement 😊