Intractable flare

[Seraphina56]

Hi. Sorry to bother you all again I posted this three days ago and got some good advice but I’m afraid this flare won’t let go and I don’t know what to do.

I tapered from 10 to 9 of Pred over a month and seemed to have all the stepmoms of a flare. Desperately tired and weak with aching across my hips. And shoulders. Talked to GP who did bloods and my ESR was 2! We decided to put the Pred up to 14mg anyway. My ESR on diagnosis was 36 two and a half years ago. Six days later it hasn’t made any difference at all. Is it normal for it to take this long? Feeling really low and need a bit of advice.

Today - GP said go up to 15mg on 9th July and repeated bloods on 10th with no result till possibly Monday.

Now, for the last few days I’ve had this kind of fuzzy head all the time with everything very slightly out of focus. I Can’t tell whether it’s a head thing or a sight thing but it feels more like the former. I can’t concentrate or remember clearly. Like being drunk. It’s constant and very disturbing. Sometimes a very slight headache but only very slight. Does this still sound like PMR?

I stopped taking Tramadol a month ago and the withdrawals should be well over by now But if not PMR, it could be that.

So to exclude PMR and in despair 😩 I put myself on an extra 3mg Pred after my blood test yesterday. So I’ve had two doses of 18mg and maybe the aches have gone a bit but nothing else so far. Can anyone shed any light on this?

I hope to get to speak to a GP on Monday but whenever I suggest actually seeing someone and being examined they say it’s not necessary.

[jinasc]

Never apologise for coming on here and asking any questions, even if they seem daft ones to you.

If I was you,I would be heading off to A&E right now. It needs to be sorted out and GCA excluded. So off you go.............the hospitals are safe and have it under control, once you get there the doorkeeper (many times a St John's Ambulance volunteer), will direct you to exactly where you will go to be safe.

If you do not have a mask already, then a scarf will do.

You never mess with PMR, it can sometimes morph into its big sister and that you want to avoid at all costs.

I have known people who waited too long. So even if this seems over the top - it is not - off you go now.

[DorsetLady PMRGCAuk volunteer]

Agree with jinasc, best to get it checked.

[PMRpro Ambassador]

The symptoms may well be very wishy-washy and don't scream GCA - but to me they are whispering it quite firmly. There is someone on the forum with partial loss of sight this week - no warning, it just happened.

[Seraphina56 in reply to PMRpro]

Hi All. Thank you so much for your help. I went to A&E (been there three hours). The doctor there, and her consultant boss, thought it wasn’t GCA but uncontrolled PMR. She seemed to know what she was talking about. ESR 3 and CRP minus - something. So sent home with strict instructions to come back if symptoms worsen or change. Gave a good description of what to look out for. Speak to GP on Monday and get a referral to Rheum.

I feel more reassured now. It was worth the visit.

[Skysey in reply to Seraphina56]

Really glad you went to the hospital and that you are reassured by the medical advice given. Don’t hesitate to go back if you are worried or if things change. Look after yourself.

[Theziggy]

How have you been since?

[Seraphina56]

I think everything might be starting to settle down, thank you. Then I started to feel sick and gassy, annoyingly about 10 last night. The pred affects me like that sometimes and I guess this is due to the extra I've been taking. Just sipping some milk. I'm wondering how or if I can take the extra tomorrow if its having this affect.

Thank you for asking. Just one problem after another at the moment.

[bunnymom]

PMR can be like an advent calendar of symptoms. Behind the door something new every day. Best wishes to you ❤️

[PMRpro Ambassador in reply to bunnymom]

Prefer chocolate in my calendar ...