Wondering if anyone else has had to go above 60 mg to get their symptoms back under control. I was feeling great on 60 for about 8 days, but over the past few my symptoms have been worsening daily. My headache is back on the right side and I'm having left side numbness/pain in my arm and fingers and an odd sensation in my foot on that side.
Short version of my story - GCA suspected by urgent care in October 2019 (my dad has GCA/PMR). I'm 46 and had a sudden onset headache on my right side that spread to temple and jaw and wouldn't go away. I went to an urgent care after a week and they started me on high dose steroids. I've been fighting for a diagnosis ever since. First two rheums didn't think it could be GCA because I'm "too young". Second rheum agreed to treat with steroids at a lower dose. I went up from 20mg to 60mg over the course of two months with symptoms under control for about a week at each level before starting to occur again.
Fast forward, I just saw a new vasculitis doctor this week who 100% believes it is GCA. He is doing a TAB next Friday but I'm very concerned about my symptoms being back on 60mg.
If you've had to go above 60, was 80mg enough or did you have to go higher? Worried now that we aren't going to get it into remission.
It sounds a bit to me as if it was caught early-ish and is getting worse over time. The pred does nothing to the actual disease process and any dose is able to manage a certain level of disease activity - so a dose may be enough this week but by the following week the disease activity has risen, and there is more inflammation so last week's dose isn't enough.
Can you speak to this new doctor? Who sound fairly sensible - but I'm far from sure a biopsy will show much after this long on pred.
Thanks PMRpro! Always appreciate your thoughtful responses. I plan to call his office today for advice on upping my dose. Going out of the country on travel this weekend and nervous about it. He decided to go through with the biopsy on the chance we may still be able to see scar tissue since I was symptomatic for so long.
Fair enough - he is thinking then!
Hi. My rheumatologist also went ahead with biopsy after weeks on high dose as she said that even if no giant cells present there may be inflammation and scarring present still. All the best cc 🤗
Thanks Carollee! Did you get results yet?
Hi. It was 41/2 years ago. It was negative but symptoms too compelling to not be treated. I already had pmr at the time anyway. The biopsy is only useful if its positive. The giant cells could easily be in the part of the artery above or below the biopsy point as you can’t tell from the outside. If it’s positive nobody argues about it. I don’t doubt I had it (seems to be in remission now, still have pmr) so I took the higher dose steroids. 🤗
Totally makes sense. Happy to hear it’s been in remission for you!