Hello, diagnosed with Giant cell arteritis

FiShhooKS · 25. Oct 2021, 08:17

Hi ,abut early in the morning, but don’t sleep for long !! I was diagnosed with Giant Cell Arteries in my head back in August, been on steroids and will be for 2 years , dosage started off at 40 mils for 2 months and now to 20 mil and down again in December to 15 and it slowly decreases. I don’t know of anyone else who has this condition. I just like to know the limits of my activities, couldn’t do too much for last 4 months, tired, short of breath light headed and struggle with speech. With steroids I have gained weight and not with moving much even so . So I decided to pull myself together and start what I was doing pre diagnosis. So started my open water swimming on Saturday and am out walking again with a buddy as of today!! Sorry for this lengthy hello but didn’t know how to get started

PeterJ · 25. Oct 2021, 08:26

Hello @FiShhooKS and welcome to the community. We are a friendly and supportive group and I hope that that will be your experience as well.

I understand that you have been diagnosed with Giant cell arteritis and have been on steroids and that these have had an effect on your lifestyle. Good to see that you have started swimming and walking again. Hopefully this will make you feel a bit better generally.

Our website has a lot of useful information and if you haven't done so far I would urge you to have a look around. It also has a good search facility as well. To help you I've put a couple of links below you may find of interest.

https://www.versusarthritis.org/about-arthritis/conditions/giant-cell-arteritis-gca/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

https://www.versusarthritis.org/news/2019/october/exercise-and-arthritis-the-benefits-of-keeping-active/

Please do keep posting and let us know how you are getting on, and I am sure others will connect with you as well.

With very best wishes

Peter (moderator)

stickywicket · 25. Oct 2021, 13:19

That's by no means a lengthy first post - just enough to let us know what's happening and how you're dealing with it. Extremely well, I think.

Unfortunately, we don't have a lot of people on here with GCA and those who do come tend not to linger, probably because we don't have a lot of them😉

We do have some people with Polymyalgia Rheumatica (PMR) which is closely related to GCA. My daughter-in-law was diagnosed with this about three years ago. Her treatment was the same - a whacking great dose of steroids then slowly reducing. Like you, she is very active and refused not to be. I don't know if this has helped or hindered, really. Helped in that she's been able to remain positive and upbeat but she did hit 'the steroid wall' a few times and had to go back up or tread water for a while. However, she's now down to next to nothing ie one every couple of days.

I hope things will go as well for you. If in doubt, with the steroids, do consult your GP for the wisest route. They're not a med to be toyed with but very successful when taken correctly.