GCA Novice: Just been diagnosed with GCA a month... - PMRGCAuk

PMRGCAuk
9,456 members16,644 posts

GCA Novice

Just been diagnosed with GCA a month ago. Male and under 60, so a bit against the statistics. I joked that the doc might have given me an official diagnosis as being a bit of an old woman! Actually it was the optician that picked it up first and was brilliant, GP followed it all up and has stuck me on 50mg of prednisolone, symptoms virtually disappeared within days. But oh boy was I high, short term memory is still useless but the long term stuff and brain activity was scary, found myself remembering highly technical things like organic chemistry that I haven't studied in almost 40 years. Settling down now, short term stuff still fuzzy but I am less hyper; although I am already missing the fact that my briefly amazing University Challenge scores have dipped off a bit over the last few weeks!! Still exhausted, but at least I now know what it is and am learning to pace myself. Have recently taken on a quite high profile job as chairman of a national organisation and am a bit concerned as to how I will cope, my executive team have been brought into the loop and have been brilliant, re-scheduling and making sure I get time either side of meetings etc. I guess I am very very lucky to have this level of support and the fact that my main day job is largely under my control as well. I really feel for anyone who has to deal with all this and try to hold down a job as well. Still getting night sweats and mild symptoms, but usually if I have been overdoing it or have allowed myself to become dehydrated. Very useful reading through this forum for pointers and moral support. Thanks.

16 Replies
oldestnewest

Hi

And welcome... yes you are slightly against the norm! But take the word of “an old woman” your optician done good!

After the initial high of all that excess cortisol charging around you do feel a dip in energy levels! But as you reduce and your body gets better used to it things do improve.

Glad to hear you’ve got everybody on side, because life has to be led at a slower pace - for your benefit. The easier they can make it for you, the easier your life will be. Not EASY but easier!

As ones who’s come out the other end you might find my views helpful -https://healthunlocked.com/pmrgcauk/posts/private/137441999/information-for-new-patients-updated

4 likes
Reply

Have you been referred to a rheumatologist? Brilliant optician, brilliant GP - lucky you!

4 likes
Reply

Good luck with it all , sounds like you are reacting positively to the medication and taking it all in your stride.

Don't forget we are all here to help and support you as you go along with any practical questions or if you need a bit of support .

Please keep posting and let us know you keep progressing.

And make sure you balance rest with all those busy jobs you have to do , then I am sure you will be one of the positive success stories on the forum we loveve to read about.

Bee xx

3 likes
Reply

Welcome Fowler you have found the best forum going for PMR/GCA sufferers. Great support & information here from experienced people.

Quite a few of us flew high on that early pred. dose. It calms as the dose comes down!

20 months GCA myself now on 10mg pred. Be wary of rapid tapers is my experience.

Good luck on your journey through the illness. ATB

3 likes
Reply

Hello Fowler- you're in the right place on this forum: I found it indispensable when I was diagnosed with GCA/PMR 20 months ago. You have to watch your diet as well and possibly you (and your doctors) will find it helpful to keep a diary as you go. Also can highly recommend (as others have too) Kate Gilbert's PMR/GCA Survival guide'. Bon courage!

2 likes
Reply

Tough when you are working. Rest at every opportunity.

You will gradually reduce your Prednisolone dose which will help (under medical supervision) The moonface will go down, honestly!

I'm almost nine years on since diagnosis and was discharged from hospital six months ago. Still some symptoms, such as head tenderness but more energy and I still have to pace myself, so prepare yourself for the long haul. My blood results gradually returned to normal.

I was put on Methotrexate when my Prednisolone was reduced, this being a steroid sparing drug, but it is not without risks and needs monitoring regularly with blood tests.

Good luck and stay strong! X

2 likes
Reply

I've been on prednisolone since 2011 - 60 mgs at one stage for 15 months - & am now considered to have Refractory GCA. I'm on my 5th attempt at tapering and am currently stuck at 20 mgs, waiting for a virus to clear which has caused yet another flare up. I've had a lot of problems over the years, many of them caused by not resting, trying to carry on as normal, work my GCA into my already overcrowded life etc etc and gradually, I've had to give up everything and concentrate on allowing the steroids, other treatments, resting etc to make a difference.

Please don't try to rush things and be tempted to charge around on good days as there's also a price to pay for that.

Ask you GP to refer you to a good rheumatologist - there will be lots of advice on that on this forum. Most of us have had difficult times with our rheumies! - especially when we don't fit the text book treatment. All the very best & continue to put yourself FIRST.

1 like
Reply

FowlerVF

I also have GCA and PMR since June of 2016. I started at 60mg of Prednisone and it helped (a lot). I had difficulty getting below 23mg of Prednisone so I was put on Tocilizumab/Actemra injections and it was very effective. You may want to ask your Rheumy about it. It is not for everyone but it helped me. Welcome to the club no one wants to be in.

Reply

Hi FowlerVF

Like you I’ve been diagnosed with GCA early December and am under 60. I’m trying to read as much as poss to try to understand Whats happening to my body. I’m still on 40mgs of Pred reduced from 50mg as I’m still having head pain. I met with a great Rheumatologist last Thursday who is suggesting Methotrexate injections to reduce the Pred further as the side effects are difficult at times. I too have just gone back to work on a phased return and have reduced my hours from full time to 25 each week and so hope I can continue to work. I’ve a good team around me and am lucky I can be flexible and work from home some days too. I’ve found this site invaluable particularly in the early days and weeks. Good luck with your return to work and sending very best wishes Jackie

1 like
Reply

The methotrexate may help - but then, it may not. It doesn't always and it does add a layer of side effects as well as possibly making you more susceptible to infections. UTIs and colds are bad enough for some people on just pred.

Reply

Thanks PMRpro I’m hoping the methotrexate will help with Pred side effects and tapering. I’m aware I have a long journey ahead but am trying hard to be positive with so much uncertainty and side effects. So value everyone’s comments Thank you Jackie2

Reply

I'm just saying it so you don't get your hopes up too far - if you are lucky you may find it helps but there are no guarantees and if it doesn't help or you get mtx side effects it wasn't your fault.

Reply

Thanks for all the messages of support everyone. It does help. One of the things that is difficult is having no outward symptoms, people cant work out why you just cant function and I feel like a bit of a wimp when I explain!

Had to laugh at the "watch the diet" comments; this was always going to be a challenging year for me in the waist line department, lots of formal lunches and dinners as part of the new job! White tie banquet tomorrow night (or wizarding robes for Harry Potter fans!), hope I can stay awake and on form for the duration and not fall asleep in the soup, at least I don't have to make a speech at this one!

Trying to pace myself, getting naps and rest whenever the opportunity arises. But this is still my life and the bloody GCA will have to deal with me as well! Trying to persuade my wife that a short skiing break wouldn't be such a bad idea, obviously not going to do many black runs, but the thought of having a real excuse to cruise the blues from vin chaud to vin chaud does appeal. And even if that's too much I could just about manage to sit in a deck chair, work on my vitamin D intake and plan the evening meal for maximum calcium. Thank god for oysters!!

1 like
Reply

You may have to come to Vin Brulee land if you want sun and skiing! We've had rather less snow so it is still safe (and you can get here) ...

1 like
Reply

Agreed, Italy is so much more friendly all round. San Cassiano, Dolomites is current favourite. Not a lot of snow but probably enough and such a lovely spot.

Reply

It's a 45 minute drive for me - it is snowing currently. Only the long pistes down to Armentarola are not open as far as I know. Family are up there skiing this week...

1 like
Reply

You may also like...