Not seeing my Rheumy til September so thought I would ask this question After you finish your year with Actemra does the CRP start
To climb again if your GCA is not in remission? In regards to GCA I am pretty symptom free so just wondering how they determine if the GCA is in remission
Really good question. I have formed the impression, perhaps erroneously, that when the time comes, this cut off one year period may not be enforced.
My Rheumatologist thinks that one year will be enough time for my GCA to go into remission. I was diagnosed in April of this year. Tocilizumab started 5 weeks ago. I will possibly be done with Pred in 15 weeks. All very new stuff.
Neither piece of information can be verified and I share your concerns.
Your situation sounds very similar to mine ..do you have PMR also?
Yes I had PMR for 4 years ( possibly undiagnosed Large Cell Vasculitis for some of that time). I was down to 3 mgs Pred when GCA was diagnosed via an Ultrasound scan with a specially trained technician. My symptoms haven’t been the typical ones you look for in GCA like the jaw claudication and eye symptoms. I was unwell with a headache and a very thorough Rheumatologist thankfully.
Doubt anyone here knows the answer to that! Or whether anyone does. With Actemra the symptoms rule rather than the usual blood markers so once you stop the Actemra they will watch for that. So far it looks as if the GCA remains in remission for some time but those studies are still ongoing.
CRP is quite non-specific, all sort of things can cause inflammation that makes it go up.
I was not on the injections for one year more like 3 months. Since stopping my esr increases each month. Currently back on 20mg preds. No proof but the injections maybe responsible for the fact I now have gastritis, swollen liver and spleen. Liver has improved with higher dosage preds so another vicious circle begins
Lots more studies need to be done
I have been on Actemra since January, plus prednisone since November. Being on prednisone for so long has caused a lot of issues. I now have osteoporosis, non GCA vision problems to name a few. All my doctors have said that my problems are due to the prednisone. I am hoping to go down to 2.5mg in two weeks. I am so blessed to have such great doctors. I am being monitored by my internist, rheumatologist, & neuro ophthalmologist.
L
I have been on Actemra for 2 years.still had minor symptoms at one year mark just before weekly injection due so stayed the course. 6 months later felt great. So went to twice monthly injections. Same thing little “niggles” just before Med due. Now 6 months later feel great again. Will re-evaluate with Rheumie in Nov do I stop and see what happens or go to monthly? Am in the States so options may be different. Stopped even checking CRP when went on Actemra as it pretty much takes it to zero by it’s action. For those with IL-6 type GCA it works marvelous so long as side effects minimal.
Hope it works well for you!
Hi. It is based on if you have any symptoms and your inflammation markers.
If symptoms, jaw pain etc return then I have been advised to call rheumy. Bloods Are taken at end of injections, then in 6 month and more bloods in the following 6 months. If all clear then in remission. The book says there is a 50/50 chance of return within a 2 year period, however my rheumy has only had 1 case relapsed. He thinks the cases the 50/50 were based on, may have been very severe, although unsure what severe really means. Hope this helps
I have been on Actemra for 16 months now still get occaisional mild GCA discomfort Good news is my RA is in remission. My rheumatology department seems to be struggling at this time and is very difficult to contact. They are working from home and ‘phoning in to pick up messages. I have had no reply to my query about blood tests but my GP has arranged them next week at the Practice. They are getting me in first at 8am and blocking off the next slot so that I do not bump into anyone.
My doctor told us that I would be on Actemra for two years. One of his patients is a well known doctor in our med center, he has been on this drug for two years and is doing well. I will ask him what happens after the two years. I get bloodwork every month to monitor my SED-Rate and CRP. This is one way to see how the drug is doing. I have also been on prednisone since I was diagnosed in November. I am down to 5mg and hoping to be on 2.5 in two weeks.
L
Quantiferon TB Golf test before starting Actemra
Another GCA related question.
Interesting thought to prevent another PMR/GCA attack
Reaching Zero Pred. A Reminder. 
The Actemra journey ...
