Relapse

[Pamela60]

GCA since November 2016 & PMR since 2018.

I've been taking methotrexate for about a year now and managed to reduce to 4 mgs pred - the boom a massive relapse. First thought to be another stroke as symptoms included numbness on face, slurred speech and drooping of my mouth. In hospital for a couple of days bp sky high.

I had a funny feeling it was going to be gca! I'm still awaiting results of mri but have an urgent appointment with my rheumatologist tomorrow.

Currently on 20 mg till I see her.

I'm devastated I feel so low. I don't want anyone around me, I can't drive in case it was stroke.

Omg what if its both?

I haven't posted for a long while as I was doing so well..

But its off my chest now

Thanks for listening.

[DorsetLady PMRGCAuk volunteer]

Hi,

sorry to hear your problems, but good you've got appointment tomorrow - please let us know outcome.... and good luck.

[SheffieldJane]

So sorry to hear that you are going through such a frightening and upsetting time Pamela. I can completely relate to your not wanting anyone around you whilst you gather your strength and thoughts together. I sincerely hope that things turn out to be not as bad as you imagine. Take taxis, to heck with the cost. Thinking of you. X

[SnazzyD]

I’m so sorry, what a blow. Do try to reach out to somebody in the flesh or us if you can’t bring yourself to.

I hope you get your questions answered tomorrow. 💐

[Blearyeyed]

That's what we are here for , so sorry to hear your news.

All I can say is , I empathize with the feeling of frustration and alarm at the thought of having two big things hit you at once.

But , know that you are in the right place and things are being investigated , so until all the results are in , try to relax and distract your mind from it in any way that works for you.

I know , easy said than done , but even if you can just close your eyes and do a little deep breathing , or let yourself sleep whenever you want to , it will help give you the strength for the days ahead.

Have you got a friend , neighbour or family member you can call on now to help you with driving , talking with doctors , doing chores and giving you company?

If you haven't held out a hand for help yet , it's time to do it now.

Take care and please let us know your news when you are up to it xxx

[gifford7]

Shortly after my diagnosis of GCA and put on 80mg pred I had a GCA induced stroke,

verified by CT scan & symptoms, on entrance to hospital. Blood tests showed my CRP was still very high despite 20 days at 80mg pred, so was given a pulse dose of pred by infusion: 1,000mg/day x 3 days methylprednisolone. [in the US--in hospital 3 1/2 da]

[PMRpro Ambassador]

So sorry to hear that and I do hope your rheumy has some positive things to say today.

Never mind - it will all improve again. Know how you feel about missing the driving - I was stopped for 6 months (totally incorrectly) after a TGA (transient global amnesia) that the stroke lead couldn't recognise. As I had untreated PMR at the time it was an awful few months and I couldn't go anywhere where I lived at the time - all hills and lousy bus service.

Lots of virtual hugs - and do try to find the courage to find some real ones more locally.

Am I right in assuming you are under the Freeman in Newcastle? Or are you somewhere else in the NE?

[Pamela60 in reply to PMRpro]

Hi.

I'm under Dr Peterson at Queen Elizabeth Gateshead and I can't praise the department enough after being at Shotley Bridge when first diagnosed. They have a helpline which is so helpful.

Onwards and upwards x

[PMRpro Ambassador in reply to Pamela60]

Shotley Bridge was under Durham wasn't it? They were hopeless! QE - I'd say are probably amongst the best in the country.

[Pamela60 in reply to PMRpro]

Wow - consultant just rang me Sunday night - got to go up to 40 mg for a week!!

Side effects here I come.

[PMRpro Ambassador in reply to Pamela60]

Which are worst for you?

[Pamela60 in reply to PMRpro]

Awful. I've been on steroids 4 years in November and I've just got back to a comfortable weight.

Starting again with palpitations and sleepless nights. I'm putting a lock on the food cupboard 😂😂

[PMRpro Ambassador in reply to Pamela60]

Have you done low carbs? I took off 35lbs of pred/PMR related weight! My palipitations were (are) PMR-related, not pred. At least if they were due to pred I;d know one day they will go away!

[Pamela60 in reply to PMRpro]

Been at target with slimming world for over a year I don't mind low carbs honestly I eat more fruit and veg than anything.

[PMRpro Ambassador in reply to Pamela60]

But be careful with fruit - lots of carbs. I was a pig yesterday - the neighbour gave me 3 bunches of grapes straight off the vine! One had gone before I noticed. And I know how much sugar is in them

[Jackoh]

So sorry that you are going through a difficult time, with two big things to consider at once. Good that you were able to post this and explain your situation. Do keep in touch- always someone here to encourage, support and advise.

[Pamela60]

Yes got it now thanks.