Newlyish Diagnosed Grateful to find this website

[Louiseiw]

Hi Everyone,

I went to my GP back in November thinking I had either an ear or sinus infection, thankfully she was on the ball and after taking something like 10 vials of blood she sent me home with 60mg perisdione to start immediately with a suggested diagnosis of GCA. I think at that point I wasn't neccesarily believing it. And I had never heard of it either! I was really lucky that I had an appointment with the Consultant within 2 weeks! Originally because of the various stresses I was under at the time he wasn't entirely sure but continued with the steroids as they appeared to be giving some relief from the symptoms. However I become so clumsy, literally tripping over myself, dropping things, to the point that a friend of mine refuses to let me anyway near her new laptop if I have a drink in my hand, and I am not allowed to put open drinks on the table etc, My lovely church family call it doing a Louise! And yes brain fog, but I am also menopausal! So I am never sure what is causing some of it!

Then we had the conversation after Christmas and I started reducing the steroids by 5mg a fortnight, everything went well until I got down to 25mg at which point all my symptoms reappeared , and again a second time and again a third time,

So 4 weeks ago I started Metheotraxate, with the Folic Acid and Alendronic Acid and Theical- D3. The first couple of weeks, I was quite unwell physically, couldnt walk up the stairs without getting breathless.

Does anyone know if these side effects settle? I know that my eyesight is vital - espicailly as I am my husbands carer!!

I am so grateful that I found this website, I have really struggled with not knowing anyone else who has the same condition, just to know I am not on my own!

Sorry for such a long post, they wont all be this long!

[DorsetLady PMRGCAuk volunteer]

Hi And welcome

This link covers all things methotrexate - so might be good to have read through -

healthunlocked.com/pmrgcauk...

Would say had you been reduced a little slower then maybe you wouldn’t haven’t flared and need to be on MTX -but that’s a bit late now…pity you didn’t find us before.

You might also like to have a look at the FAQs perhaps starting with this one -

healthunlocked.com/pmrgcauk...

[Louiseiw in reply to DorsetLady]

I dont think that even being on 30mg of steroids, the inflamation markers in my blood were still at 28. I think the consultant was really keen to keep me on steroids as short a time as apossible

[DorsetLady PMRGCAuk volunteer in reply to Louiseiw]

That’s all well and good…..but you need to be on some sort of medication until your GCA goes into remission - and no one can tell you when that will be.

By reducing the Pred too quickly for the activity of the disease just means invariably adding in another drug, which in MTX’s case may or may not help….but also adds in another group of side effects.

I was on steroids for over 4 years for my GCA, allowed to taper in a sensible manner, never had other drugs added in, never flared.

Lucky perhaps, but didn’t have a doctor trying to push me to reduce…

[PMRpro Ambassador in reply to Louiseiw]

I'm sure he was - however, GCA is a chronic autoimmune disorder and continues for something like 2 to 4 or 5 years depending on the person. The intial dose of pred cures nothing and you need enough pred ongoing to manage the inflammation or you end up back where you were. You aren't reducing the pred relentlessly to zero - you are looking for the lowest effective dose.

As DL says - either you need enough pred alone or you maybe get away with a bit less pred at the expense of another immunospuppressive drug that may or may not work. And nothing you can do will speed up the underlying cause going into remission.

[Louiseiw]

Thank you for your replies I am due to see him in 2 weeks time so.will chat it through with him . Thank you for the information.

[Pandora2 in reply to Louiseiw]

Stick with these ladies Louise , they will pull you through. X

[DorsetLady PMRGCAuk volunteer in reply to Pandora2]

Whether you want to be pulled or not 😉…

[Pandora2 in reply to DorsetLady]

🤪😵‍💫 !!

[Louiseiw]

😀😀Happy and Needing to be pulled, Fish out of water comes to mind!

I am an ex Ambulance crew volunteer for British Red Cross and also Trainer and Assessor etc. I am my husbands carer, he has various physical and mobility disabilties and has brain damage and a hole in his head and Jan 2020 he nearly died through meniningitis. In my working life I worked in the community with children and young people suffering with life threatening and life limiting conditions and thought I had seen everything and nothing phases me! Oops I was wrong!

So feel free to pull/drag me along!

[DorsetLady PMRGCAuk volunteer in reply to Louiseiw]

“So feel free to pull/drag me along!”..,

With pleasure 😉

[PMRpro Ambassador in reply to Louiseiw]

Why we are here!