Accents question

[Darcy2000]

I am on Actemra til next August ( once a week) for GCA.

Just wondering as I really didn’t have any worrisome symptoms other than an occasional slightly tight jaw while eating. They did the Artery biopsy which validated my Rheumatologist’s opinion.How do they determine if it is gone ? Is it just your CRP which has been inhibited while taking Actemra and now starts to rise again ?I also have PMR so that could affect the CRP

Just wondering I know it is a good question for my rheumatologist but not scheduled til November

Thanks

[DorsetLady PMRGCAuk volunteer]

Hi,

The only way to know if GCA is gone into remission is when you stop all medication and you have no return of symptoms!

In the meantime the inflammation caused by the underlying illness it controlled by the meds.

Your CRP could be affected by both GCA & PMR, but also a myriad of other things - so symptoms are the key to note.

Does the jaw pain stop as soon as you stop eating? It could be FCA, but it could also be TMJD -webmd.com/oral-health/guide...

But probably good idea to speak to Rheumy office if not sure.

By the way - you can edit your post If you need to - don’t need to raise a new one.

[Darcy2000 in reply to DorsetLady]

Thanks for helpful information . I have another year almost so it’s a wait and see

[Chrisellie]

Hi

Yes CRP and symptoms. After roughly 7 months I was off pred and the final 6 months (12 in total) was off Tocilizumab injections. Continued bloods every so many months and told to contact them if any symptoms returned. So far so good . Off Injections for about 7 months. No meds no symptoms now, so far. Hope it works the same for you.

CRP not increased. PMR ...no symptoms either

[Darcy2000 in reply to Chrisellie]

Wow I can only hope for that outcome

[Keeping_healthy in reply to Chrisellie]

I think I may be on a similar plan to you, for my GCA. I am currently on a fast taper along with weekly Actemra injections. I started at 60mg on May 21st and I’m currently taking alternate days of 5mg and 2.5mg. On Monday I will reduce again to 2.5mg daily for 2 weeks. So at this speed I should be off the prednisone by Christmas and probably just be taking the Actemra . It’s great to hear that you have had no symptoms since you stopped the drugs. I always worry as I’m aware that I am tapering fast, so I hope I have the same outcome as you. If you don’t mind me asking how old are you? I had just turned 50, so I wonder if it’s easier if you are younger🧐

[Chrisellie in reply to Keeping_healthy]

64 unfortunateley.🤫

[LemonZest11 in reply to Chrisellie]

Brilliant news!

[Rugger]

That is exactly my question, too! I'm on Tocilizumab until next year, so will be interested to see what my CRP does when I'm off it, as it always used to respond to a flare of PMR and then last year, the onset of GCA-LVV when CRP rose to 87 from 4.

My 'herald' symptom of GCA is claudication in my legs, as my aorta and its branches are involved. I am constantly evaluating any pain in my legs and it's usually because I've been trying to do too much!

My next phone call with my Rheumatologist is also in November - Question of the month!

[Darcy2000 in reply to Rugger]

You bet ..we can both post our responses in November

[PMRpro Ambassador]

I imagine that once you are OFF tcz, the CRP/ESR returns for consideration. But Prof Mackie says she uses symptoms for patients on tcz at all times.

[Rugger]

My problem was with both legs and a general 'running out of steam' when I walked more than 200 yards or so. My Rheumatologist guessed that it might be claudication due to reduced blood supply and a PET-CT scan confirmed that I had vasculitis in my aorta and other arteries, including those supplying my legs.

I hope you discover the cause of your symptom.

[PMR2011]

Yes, TCZ by its nature takes our CRP to zero so it is no longer a good indicator for disease activity. The GCA is then gauged by symptoms. Interleukin 6 can be measured but the test is expensive and still being investigated as a measure.