Light at end of tunnel

[Vpankhurst]

Had GCA and poly reumalgea for seven years

Now down to 1 mg a day and all is well just had hip replacement and it is going along well

No more excruciating pain walking with one crutch 2 weeks post operative . Hopefully get back to walking without aids very soon and be able to relieve my husband of dog walking.

The joy of being able to walk like I used too will be amazing.

Rheumatology appointment 23rd August maybe down to zero pred !!🤗

[Simba1992]

Hello Vapankhurst,

It must really feel great! I have often wondered about the GCA, PMR treatment and the high does of corticoids often prescribed. Seven years is really a long time on steroids. Were you forced to take high doses? Did the treatment leave any troubles? I hope I'm not too intrusive, I just try to learn more. Good luck and congrats! x.Simba

[Vpankhurst in reply to Simba1992]

I took what my rheumatologist prescribed I had lots of difficulty bringing the dosage down as each time I came down I suffered a flare and had to go back up. There was serious tiredness also frustration and depression in not being able to get on top of it. I think probably my muscles have deteriorated due to steroids and skin is not what it was but then I am older a nurse said u should moisturise often when on steroids as the skin gets thin. But I am determined to do all I can to get back on track. Also the choice between steroids and going blind is a no

brainer so no choice. My rheumatologist is the best in this field and I followed his instruction.

[Simba1992 in reply to Vpankhurst]

I can only imagine how hard it must have been, and how wonderful it must feel to be able to put that behind you. The high doses of steroids for such a long time did not seem to leave very bad marks, I'm sure excersize will make your muscles stronger again.Take care.xSimba

[Yogi-bear123]

I’ve been on steroids now for 3 years currrntly 20 mg . Got down to 10/7.5 on Benepali. But now early days with cosentyx so up again. ( still have swellings but manageable... just)

What was your highest dose and what dose were u on for the longest to get everything under control?

Congrats on the 1 mg and hip replacement going well. Know how u feel as I’ve got 3 dogs that need walking🤪

[Vpankhurst in reply to Yogi-bear123]

I started on 60mg cannot remember for how long and gradually reduced

But on most of the reductions I had to increase again due to having a flare.

I tried methotrexate but didn't help and leflilomide gave me side effects so it was a slow progress. I took part in the TABUL study as my rheumi was the lead in this and have had several scans to check my GCA. When I was diagnosed the next day I had a biopsy as there was no scan then and it confirmed giant cells my bloods were 145 I would say being on 10 mg was the longest. Just hang in there I was dog walking all the way through till the onset of the hip problem I found it therapeutic and really missed it my husband can't wait till I take over !

Good luck on your journey and you will get there 😁

[Yogi-bear123 in reply to Vpankhurst]

Thanks for that!