Help !!!!

[Monkeymate]

Hi I’m a 60 year old rejuvenated teenager ,living with pmg /gca only recently diagnosed but suffered as you all with wrong diagnosis.ivguess I’ve joined you all for support kindness an understanding,as not in a happy place at mo .can any of you tell me how many of you have lost or partially lost you sight , as I’m a great believer in knowledge is power 👍hope you reply

[Wraysbury]

Hi a fellow nonsleeper seeing as ur awake now! Welcome! I’m 61 recently diagnosed with PMR. I don’t have GCA luckily but developed low pressure glaucoma at Christmas and had already lost all peripheral vision in 1eye and one area in the other, so I hope I don’t get it too!!

[Monkeymate in reply to Wraysbury]

Morning😁awe bless you an thanks for speaking to me I’m smiling already , soo how an when did they diagnose your p m g ?

[Monkeymate in reply to Monkeymate]

An what time were you up lol

[Wraysbury in reply to Monkeymate]

Good! I was just being my normal manic self, well pre PMR normal self, as had moved hse and totally unpacked in 4 days approx 70 packing cases! Cleared the 15’ high overgrown garden in the next 5 days, oh and decided to take up the 0-5 ks challenge, jogging 3 times per week, despite everyone telling me to slow down! That was all on top of my usual activities. After week 3 of jogging I woke up with really painful knees and within a wk had bilateral pain in all my large muscles. I could hardly walk, was rigid with pain in bed, my super fit 95 yr old dad was looking after me!! Went to Gp. She ordered bloods and rang me and the next day as my markers were so high she started me on prednisolone that evening. the next day I woke up and I could move! She said that confirms the diagnosis. This was about 4 weeks ago

[Wraysbury in reply to Wraysbury]

Oh I’ve been up since 4!!

[scats in reply to Wraysbury]

It's quite usual to be awake early when you're on pred it will improve as the dose reduces. It is also quite normal to feel hyper until you get used to it.

Most of us are frightened and low to start with. We miss what we used to be, the real us, there is a morning process.

I'm not an expert on eyes but someone who is will be along to advise you soon. There are a lot of knowledgable and experienced people on this forum.

You could always try searching in the box top right of your page.

[Monkeymate in reply to scats]

You’ve made me laugh and cry if only someone had said in the hospital,someone will be along soon lol and cry ,you said it miss who I used to be , I have to say this is the best.all of you know understand an care , I’m able to say , I’m hurting , I’m alone an you get it , thank you for it’s your words , your experiences that’ll be my guide x

[scats in reply to Monkeymate]

You'll find every one here will understand it comes as a great shock to start with but once your body adjusts to the pred and you get the right dose for your needs things wont be so bad.

You're in the right place have you read some of the older posts, you'll see youre not alone.

[Monkeymate in reply to scats]

No but I will , how long you had it ?

[scats in reply to Monkeymate]

About 3 yrs now on pred about 3 mths less. It's not something you can rush you work with it. Are you in UK?

[Monkeymate in reply to scats]

Ye in Kent , I was just looking for a group in Kent so I’ll have to find out when where they meet , as it’ll be great to meet like minded souls 😁 just throwing it out there

Does any one else get up at 1 a m ???

[scats in reply to Monkeymate]

I was going to suggest a support group.

I often wake up at odd hours and have learned to live with it, I'm not working so sleep when my body needs to.

I can watch what I want on the TV without arguement in the middle of the night!

[Monkeymate in reply to scats]

Wow result lol

[PMRpro Ambassador in reply to Monkeymate]

pmrgca.co.uk/groups/

There are several in the SE as you will see.

[suzy1959 in reply to Monkeymate]

Hi Monkeymate, don't know where you are in Kent- there are a few groups. I go to the one in Maidstone which meets on a Monday morning. Our next meeting is on 24th September. You can get more details from the PMRGCAUK website as I can't remember the address!! You would be very welcome. We have an Osteopath coming to talk to us on 24th.

[Monkeymate in reply to suzy1959]

Hi thanks for reaching out to me I’m going to try and make it but have a hectic schedule for the next 3 weeks .this week a temperal artery biopsy /not looking forward to it then twice more to Hospital this week . Following week rheumatologist then up to guys heamotology ,, I’ll be shattered 💤💤an plenty of it !!any excuse for a snuggle under the duvet!! An how are you ?

[DorsetLady PMRGCAuk volunteer]

Hi,

Welcome to all us rejuvenated teenagers! And some not so rejuvenated!

If you are awake another night/morning you might like to have a look at my profile and some of my posts to give you an idea of my journey. Just tap on my picture.

Eighteen months misdiagnosed- ended up losing sight in right eye. Now in remission and off Pred for 2 years.

[Monkeymate in reply to DorsetLady]

Hi I was up early AGAIN !!so to a peak at your post, o my ,an look at your smile 😀you’ve been through so much an obviously still are ,so I’m going to look forward to meeting you in person one day, mind you you’d have to guess who I was in the room as I don’t really look like my pic lol although I guess that could be debatable 😂😂😂

[DorsetLady PMRGCAuk volunteer in reply to Monkeymate]

What vacant! 🤣😂🤣 . I think most can equate to that feeling/look early days.

[Grants148]

Welcome Monkeymate,you will find plenty of help and friendly support on this forum,you are no longer ‘on your own’ and Dorset Lady and PMRPro are very well informed and will be a great help to you .Good Luck !

[Monkeymate in reply to Grants148]

Ah thank you , I’ve already been made to feel so welcome , tell me something as I’ve never done or joined any thing like this .can everyone see what I write or is it just you ??

[PMRpro Ambassador in reply to Monkeymate]

It depends on your settings - when you write a post there is an option for everyone to see it or just the Community you are posting in. When you reply the same thing applies - it depends what the original poster chose. But in this case, all of us can see the reply if we can see the post. If that makes sense...

[Monkeymate in reply to PMRpro]

Hmm I’ll chew that one over lol

[Monkeymate in reply to Monkeymate]

Ok so chewed an digested 😂am understood . Now a ? For you , do you or any one else ever feel heavy or limp down one side of your body ? I’m wondering if it links only to my symptoms of g c a or if it could connect with pma , “just wondering.

[PMRpro Ambassador in reply to Monkeymate]

Are these just occasional feelings? How often have you had such episodes?

It would concern me enough to see my doctor - one-sided weakness can be a sign of a TIA (transient ischaemic attack) otherwise known as mini-strokes. Patients with GCA are felt to be at an increased risk of TIAs, especially in the first year after diagnosis so anything like that should be looked into.

[Monkeymate in reply to PMRpro]

Hi you hahaaa I screamed at reumotologists last year didn’t doctors was taken to a+e an told all was well when I told them I was having me mini strokes .ive had 3 I’ve legions in my brain. Doctors know it all NOT lupas aps is an auto immune deasese in brief sticky blood which attack’s itself causing fatigue pain at any time any where sties in eyes boils any where molar rash on face , joints that mimic arthritis which I have also !! But the other week was off the scale a/e did it AGAIN .sent me home saying they’d checked my bloods they hadn’t ,my great g p stepped in an result , now on blood pressure an 40 preds temperal biopsy this tues an carry on , so you see pmg gca plus aps an small vessel =time bomb in my head .di you get why I’m upset , frightened ,an oo soo angry ???

[PMRpro Ambassador in reply to Monkeymate]

I do.

[Monkeymate in reply to PMRpro]

O thanks I was hoping for your words of wisdom lol 😂😂😂

[PMRpro Ambassador in reply to Monkeymate]

Sorry, don't really have any - I thought your reply was saying it IS being followed up and you certainly have reason for having TIAs. I was commiserating - because I really DO understand why you feel as you do. I would too.

[Monkeymate in reply to PMRpro]

I know , but we ,all of us are up against soo much an all we can do is hold on . I know I may come over as soon an gloom but I really do have some great days , an not do I make the best of them 🍷if only lol . Why do you think I’m called monkey mate ??

[Monkeymate in reply to PMRpro]

Evening my friend, just letting you know I’m in hospital tomorrow Tuesday for the temperal artery biopsy , oo I’m nervous , will it hurt ? It’s the needle in my head that’s freaking me out , an how much of my hair will they shave 👀?? By the way do you know if there is something wrong with the site as I couldn’t get in my monkey has gone missing so I guess he’s gone looking for all your bananas 🍌 lol

[PMRpro Ambassador in reply to Monkeymate]

Honestly don't know I'm afraid. The anaesthetic needle will be fine (as in thin) and they may even use numbing cream - I don't know. But close your eyes and it will be no worse than at the dentist - the thought is worth than the deed!

The site has driven me up the wall all afternoon - but i was blaming my wifi!!!

[Monkeymate in reply to PMRpro]

But pmrpro IHATE DENTIST lol, I know I’m being a winger but I’m afraid, an secretly affraid of a proven diagnosis. Because of all my other allments . I was try today to get a photo of a report from hospital last year for your perusal , but it’ll keep till the sites up anvrunning again properly!! Hope your well x

[Hidden]

Hi Welcome Monkeymate

We’re all ‘teenagers’ in the head & as Dorest Lady says some more rejuvenated than others!

I’m a PMR’er coming up 7years so can’t offer anything on GCA but PMR been there, done that & got the Tshirt, pretty much like the rest of us.

If you wake in the night we have our friends from Down Under & the USA & Canada drop in somewhere in between, then there’s the UK Insomniac’s so always someone around, never be lonely!

Best Wishes

Mrs N 💅🏼

[Monkeymate in reply to Hidden]

Hahahaaaa my sons in the USA 🇺🇸 I’m sure he’d kill you for that lol an I promise you I will not wake you or any of you anymore , you lucky sleeping beauty’s

[Hidden in reply to Monkeymate]

I meant our US friends wake up some where in between so we’re pretty much a 24/7 Group!

[Monkeymate in reply to Hidden]

I know I was playing , but it really is a great idea , so I’ll be sure to let you know if I do ha ha