Advice please

[Flashback]

I had Lyme disease in Autumn 24 and was treated for 2 months with antibiotics but was left with a dull ache in neck which the doctor then decided may be PMR as there were slight aches in my side . I also had slight tingling in my head a bit like a lightly rolling your head over a barbed wire fence .

Started treatment with 12.5 mg of Pred in Jan and have reduced to 5 mg by March which had symptoms thoroughly under control , pains gone and sleeping well . The initial weight I put on in first month fell off quickly . Assuming it was water retention.

In January I also felt sensitive nerve pain in an upper molar and went to dentist for X ray but she said all fine so just assumed it was ageing and a sensitive tooth .

I

Two weeks ago I got a bad cold and also did 2 long haul flights .

On return I suffered the most frightening and debilitating nerve pain on side of neck , up into face , teeth and head . Straight to Specsavers to check on eye ( fine) and Gp for more advice . He immediately put me on 60 mg of Pred and after 3 days the pain in face has receded although it still feels bruised.

I have a Rheumatologist appt on Monday to check for the dreaded GCA and would like to ask this fabulous and informative community which questions I should ask . Somewhat at sea as at 67 have luckily not had many health issues . With the Pmr ( if indeed I have it as I know Lyme has similar symptoms and can go on for months after treatment) I do have fatigue and body def feels odd but that may be the Pred .

Thank you in advance .

[DorsetLady PMRGCAuk volunteer]

Hi and welcome to this forum,

Sorry to hear this, and have to say it sounds suspiciously like GCA, and well done your GP.. as for questions for the Rheumy’s- they are the ones who should be asking…, have the information you have told us to hand, so you can give the answers.

Perhaps have a look at this to give you an idea of what’s ahead-

healthunlocked.com/pmrgcauk...

GCA might be scary - but you will get through - and we will help you to do that… have to say you’ve covered some pretty scary bits already -long haul flights could have been a tad dicey!

Also sorry to hear about your previous coronary issues…are the stents okay now? What meds are you on? Shouldn’t be a problem but obviously rheumy needs to be aware of your history.

Please report back on appointment - and there’s always someone around to chat to…

[Flashback in reply to DorsetLady]

Thank you for speedy response and have looked at link . The stent issues luckily weren’t mine but for a relative who had their head in the sand a little .

I’m hoping they have ultrasound to diagnose and suspect my Pmr arose possibly from the Lyme disease of which my bloods show I’m now clear but symptoms apparently go on for some time .

I have tenderness in my left temple but not pain and some days a bit flu like but a hot lemon usually makes me feel almost normal .

I shall let the specialist lead the chat - they did say I’d need a good hour .

My Gp said he was on fence re GCa but said we shall treat for protection.

Specsavers sent the Gp an email re my appointment which they said usually concentrates their minds and speeds up process which it certainly did .

You are obviously a huge comfort to everyone on here . So much appreciated.

[DorsetLady PMRGCAuk volunteer in reply to Flashback]

Ah right - just looked at profile and saw comments about stents [have knowledge about then - hubby] - so misunderstood.

Just to say, GP did exactly the correct thing, let's hope it's not GCA, but it always must be checked...

[PMRpro Ambassador]

Hi and welcome.

Like DL, too risky to rule out GCA with that history - and the fact that it has improved with pred makes it less likely it is a TMJ problem. The speedy weight loss could be a red flag for GCA as well.

Hope the rheumy appt goes well - allowing a hour sounds good if unusual on the NHS!!!!

[Flashback in reply to PMRpro]

thank you ! I was hoping that the Pred which has taken the acute pain away means it’s not a nerve problem as that seems like another whole nightmare .

Today is day 5 of the 60 mg and even my teeth aren’t hurting . Legs feeling tight but assume that’s the water retention ?

So far impressed with NHS on this . I hadn’t posted on the Pmr as felt a bit of a fraud as had very little in aches and pains compared to some posters sufferings . Excercise always makes me feel a lot better too . The advice on here is phenomenal. My Gp said that too .

[PMRpro Ambassador in reply to Flashback]

Was the lack of PMR-awfulness with or without pred? Once you are on pred it SHOULD be a lot less bad ...

We do our best 😉

[Flashback in reply to PMRpro]

I definitely got new weird fatigue like symptoms on top of Pmr symptoms when I started the Pred . By the time it had dropped to 5 mg they had considerably lessened. Pain was gone on the 5 mg .

[PMRpro Ambassador in reply to Flashback]

Yes, pred does make some people tired, especially moderate to high doses even though for some it makes them totally wired

[Pixix in reply to PMRpro]

I’m one of the totally wired ones! On just 17mg of pred I was hyper, so much energy..actually I felt fab & we went on a really busy, fun holiday!! It was the month after I was diagnosed & had been booked for months!I haven’t felt that well in years (before & since!!) S x

[Flashback]

I did have that result from initial January dose of 12.5 for 2 or 3 days , just couldn’t stop but it lasted all day and night so didn’t sleep much. Anyway it settled down . However it was the most amazing feeling and the house has never been cleaner😂

The 60 perhaps because my face was in such pain didn’t have quite the same result and I felt decidedly odd .

However incredibly grateful for pain to be gone . I wonder how long they leave you on 60 for? Do they drop you to 40 and see if that keeps it at bay ?

[DorsetLady PMRGCAuk volunteer in reply to Flashback]

Depends on situation… in most cases a couple of weeks, until they decide the way forward… and then quite quickly down, but just make sure it’s not quickly - time-wise and/or dose-wise.

Me -8 weeks, after 2 weeks at 80mg… but that a whole need can of worms… 😳

[Flashback]

Does anyone ask for tests to see if their Adrenals are working at all or is it because they are “ shot” we are in this situation?

[PMRpro Ambassador in reply to Flashback]

No point testing for that until your regular pred dose is below 5mg, preferably 3mg. It isn't "shot" adrenals that cause PMR, it is your immune system being haywire. The pred stops adrenal production of cortisol because the body knows there is plenty of corticosteroid present and more isn't required. See the articles under Adrenals in the FAQs. Think of it like the thermostat for your boiler being in the same room the woodburner is in - while it is bruning brightly the room is warm enough - might even be too warm - and so the boiler doesn't send more heat.

[Flashback in reply to PMRpro]

Thank you