Ultrasound scan of armpits tomorrow

[Pamela60]

Seen by registrar two weeks ago , slotted in early as symptomatic again.

Shoulder and upper arms terrible at night, unable to get a good night's rest.

Stiffness eases off after a couple of hours in the morning.

I finished pred after 5 and 1/2 end of April, but still on 25 mg methotrexate once a week and fortnightly tocillizumab injections.

As usual my bloods are unremarkable just had more done yesterday and results already on my patient access.

So now scans on both armpits to see if any inflammation tomorrow 🤔.

If so I have to go back on pred ......

[PMRpro Ambassador]

Were you totally symptom-free without pred/on low pred? Seems strange when you are still on TCZ,

[Pamela60 in reply to PMRpro]

I know, it's weird I can remember starting to feel ' achy ' around about first covid jab and put it down to that.Then nearer about 1-1.5 mg pred rheumatology upped my max to 25mg as still achy. Then gradually got worse.

I suppose I daftly thought because so low I could get away with it.

In wondering, though , if no inflammation could it be something else ?

[PMRpro Ambassador in reply to Pamela60]

So you did have some aches while still on pred and TCZ?

[Pamela60 in reply to PMRpro]

Yes from what I can remember.

[PMRpro Ambassador in reply to Pamela60]

Only half of patients are able to get to zero pred when on TCZ, the rest need a much lower dose of pred. There are at least 3 different mechanisms for the inflammation of GCA and TCZ only deals with one of them. If you happen to have either or both of the others, you need pred to deal with them because TCZ has a very specific action and does nothing for the other two.

I cannot believe how many doctors are happily dishing out TCZ and taking patients off pred even though the GCA is still active. They obviously don't look at the documentation ...

[Pamela60 in reply to PMRpro]

Just checked my diary. I started pain all over after second vaccine legs hips back shoulders .Tried codeine after seeing gp, referred back to rheumatology who upped mtx, some relief.

Shoulders and stiffness worsened so back to rheumatology, referral fir scan

[PMRpro Ambassador in reply to Pamela60]

Sounds like a flare - and your rheumy was a bit enthusiastic about stopping the pred before it was resolved - if I understand your timeline right.

[Pamela60 in reply to PMRpro]

She always says I'm complicated and before I started tcz she wondered whether I would need to stay on a low dose for good.

[PMRpro Ambassador in reply to Pamela60]

There is a 50/50 chance - so it isn't unreasonable. Doesn't mean it won't burn out eventually, the vast majority with GCA do even if it takes 5 or 6 years.

[Pamela60 in reply to PMRpro]

Hi pmrpro.Just back from scan.

No thickening of vessels said lady scanning.

So now wondering what's going on.

[PMRpro Ambassador in reply to Pamela60]

Doesn't mean it isn't - other bits may be affected but not where she was looking. Of course - it COULD be MTX, it causes aches and pain, it did me, I felt as bad on MTX as I had with untreated PMR!!! It also caused pred side effects I'd never had before!

[SheffieldJane]

My GCA/Large Vessel Vasculitis was diagnosed by a specialist ultrasound scan. The “ halo effect” was spotted in my left armpit. My symptoms were not typical so I am glad it was diagnosed. I am also on Tocilizumab and was able to reduce from 40 mgs Pred quite quickly with the help of Tocilizumab. I am currently on 8 mgs of Pred and tapering. ( This happened after 4 years of PMR and getting down to 3 mgs.)Sorry you are in so much pain. Not sure whether I would see the added value of Methotrexate, unless I had arthritis as well perhaps.