Update on my first year with GCA

[Freddie01]

Hi this time last year I was diagnosed with GCA started on 60mg Steriods and tapered down to 3mg have to say this forum has been my life saver plus the fact I have a fantastic rheumatologist who has made herself available to speak over the phone. Like many I have side effects being on Steriods 2st 7lbs heavier still a lot of blurred vision and after many eye scans and examinations at hospital I have been reassured my eyes are in good condition, also had MRI scan just to double check. . I also have chronic fatigue and my rheumy has arranged for me to see another consultant so I can have my adrenal glands checked to make sure they have started working , this appointment is booked for tomorrow. I count myself one of the lucky ones but remain full aware everything could change again at very short notice. My family have walked on egg shells at times as my mood changed with a wrong glance. I now take each day as it comes and accept there is no quick fix for our condition.

[SheffieldJane]

Well done Freddie, I think that's about as good as it gets. I hope your recovery continues brilliantly. Are you male? It's just that you've come so far in one year and that is unusual. I have heard that men get, I was going to say an easier ride, but it sounds like you've had the works. Having a trusted, wise Rheumie is key and this website is uniquely and consistently supportive which helps so much.

[Freddie01 in reply to SheffieldJane]

Hi SheffieldJane I am female aged 62 like many there have been days when I didn't want to get out of bed and some nights have cried myself to sleep. I have never been one to sit still for long so I have had to push myself mentally to keep going. I have 3 little dogs who wait patiently for me to walk them daily plus 3 grandchildren who at times can be demanding I take one day at a time x

[SheffieldJane in reply to Freddie01]

Hi again Freddie by " easier ride" I just meant the one year as apposed to 3 or 4. Hats off to you for steering your little boat into port. Hope it all gets better every day.

[jinasc]

When you say 'blurry' eyes - how 'blurry'.

Have you seen a Consultant Opthamologist?

[Freddie01 in reply to jinasc]

Hi very blurry at times, yes have seen the Consultant Opthamologist 3 times this year who arranged scans each time, she said I have cathartics but they are very small and not ready to be removed.

[PMRpro Ambassador]

Another rheumy who appears to get it! All the best for the rest of the journey!

[Freddie01 in reply to PMRpro]

Thank you I know there may be road blocks ahead I had the bone scan which confirmed I have osteoporosis I take Evacal daily and had the implant which lasts 12 months next one due in December. Have my appointment with another consultant this afternoon re my Adrenal Glands given I am still really tired.

[altywhite]

Wow Freddie!! On one hand I want to say that is fantastic to get from 60mg to 3mg in one year!!! But on the other you seem to have run the gamut of side effects all in that year too!! Your rheumy sounds great and very on the ball. I hope you can at least get your fatigue explained and wish you all the luck for your continued 'journey'!! (Sorry for using that word!!! )

[Freddie01 in reply to altywhite]

Hi altywhite yes it certainly has been a rollercoaster year. The consultant I saw this afternoon has arranged for me to have blood test tomorrow for adrenal glands status, he did say the test may not be accurate so watch this space. I told him I am a member of this group and have found it a lifesaver at times, he did roll his eyes and said we should listen to our own body as no 2 people are the same, he also advisedly if my adrenal output is low I will have to increase the steroids 🙁

[PMRpro Ambassador in reply to Freddie01]

"said we should listen to our own body as no 2 people are the same"

Tell him that that is a comment made more often than any other on the forums! However - good - I hope he practises what he preaches...

[altywhite in reply to Freddie01]

Well at least he recognizes that no two people are the same!! Good luck with it all. I'm off on holiday next week but I'll try and keep up!! Good luck

[Freddie01]

Relax and enjoy your holiday as I am sure it is well deserved 😎