I have been diagnosed with GCA in March 2019. I was put on 60 mg prednisone and then tapering and now on 4 mg by DSNS method. Since April 2019 ,I was also put parallelly on Actemra 162 mg every 15 days. I have had two small flares on the prednisone taper and otherwise uneventful taper so far. The second flare was just last week with painful swollen knee. I added 5 mg to my current dose and that seems to have minimised the intensity of the pain .
My question is - My doctor has now asked me to increase the gaps from 2 weeks to 3 weeks for the Actemra injections . I am worried that if there are flares still happening , then is it a good idea to increase gaps between the Actemra injections ?
I mean if I am having flares then it means there is still GCA activity going on right ?
Actemra users please give your valued experiences and opinions......
regards
Written by
Iwillwin123
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Really something to discuss with the doctor - not enough experienced people here I imagine.
But if you are flaring then it suggests that it may be the pred dose that is too low - only about half of patients are able to get off pred entirely with Actemra/tocilizumab. The other half needs a low dose. That is obvious from the clinical trials.
However - a swollen knee doesn't sound like a flare of GCA - nor PMR. A single joint problem doesn't fit with PMR at all.
I too have GCA and was diagnosed in August 2019. I began with 50 mg of prednisone and started weekly injections of Actemra in March 2019. I am tapering the prednisone slowly and am at 7.5 mg. now. I have gotten so used to pain that I'm never sure if it's a flare but I do agree a swollen knee isn't a GCA symptom. My problems have been related to my head, neck, jaw and shoulder. I have a bad back that acts up from time to time but I know it has nothing to do with GCA. Wish I could be of more help to you.
Yes, I began 17 weeks ago at the same dosage and frequency. My doctor hasn't discussed how long I will be on Actemra. I would guess it all depends on my tapering off Prednisone. From what I have read, I would think 1 year. I did purchase the first three month of injections with my insurance paying most of the cost. After applying for financial assistance from the pharmaceutical company, I am now paying nothing. They were very generous with their income guidelines and have been wonderful to work with. I live in the USA.
I am paying the cost fir my Actemra entirely . The capping of a year is due to the insurance norms in various countries I believe. It has nothing to do with a medical advisory ??? At least I did not find anywhere that it says 1 yr from medical perspective- in fact currently there is silence on the time aspect clearly since it is still being researched . Hence the exoeriences narrated here become even more valuable.
Thankyou . But the doctors I believe are not too informed about Actemra ....... My concern was that -
Is it not better to start increasing gaps between Actemra when one is close to zero pred. Why have the Actemra -spacing when I am struggling at 4 mg Pred.
I would think since Actemra is steroid sparing , it would make more sense to hold on to it until one was pred zero safely and then start spacing it out.
I can access Actemra without problem even if required for longer periods.
Hence was looking for experiences in spacing out Actemra and the timelines fir the spacing , with respect to the pred tapering .
Remember though that not all patients are able to get off pred entirely - half require a low dose of pred. In which case, if you struggle at 4mg that may be the sign you need that much - and the spacing of the tocilizumab be increased to see if that still works.
Thankyou for your response . I always thought that the Tocilizumab was really supposed to help me get off pred while holding down the inflammation .
I somehow feel the doctors do not have much experience or knowledge about Tocilizumab since it is a new therapy. And that is why I keep checking back with others who are using it or have used it .
Not that new - been in use in rheumatology for 10 years. And yes, in GCA the aim IS to get off pred but the clinical study showed that only happens for about half. That is because there are 3 different mechanisms causing the inflammation in GCA, only one of them is managed by the tocilizumab. If you have one of the others, it continues.
Yes I see the point you are making . I fervently hope I get off the pred . Thankyou again for helping me mull over this issue. The help I get here is always invaluable.
I certainly believe Actemra has helped me taper my pred . To take Actemra at a frequency as my doctor instructs - is fine in principle , but I somehow feel my doc does not have too much experience in using TCZ . Hence I am trying to get as much info here about how and why of TCZ spacing so that I can discuss with her with more confidence.
If I am experiencing problems
at 4 mg Pred , then it means there is still some GCA activity going on right?
So then why space out TCZ in a rush ?
That is what is worrying me.
Thankyou for being so proactive and helpful . I hope I am not being too insistent , but this group has helped me hold my own in many discussions with my doc in the past .
I too am on Actemra and Prednisone. The Actemra has helped me get down to 4.5mg of Prednisone. Before the Actemra I could not get below 12.5 mg of Prednisone. I get my Actemra by IV once a month. I’ve tried going every six weeks between IV treatments and down to 3 mg of Prednisone but had an immediate flare. Initially I was doing 8mg per kilogram weight but was able to drop to 4mg per kilogram weight but keeping my Prednisone at 8mg. I’ve stayed at IV treatments every month but have used The DSNS method for tapering down to 4.5mg of Prednisone. Don’t know what my next step is but I’m comfortable being on a low dose of Prednisone for the rest of my life. Think I’ll stay on Actemra and try to go down to 4mg of Prednisone. Its really a dance. Hope this helps.
The problem is that since GCA is rare, most rheumies ,I feel ,do not have too much experience in working with TCZ though they are well versed with pred use and problems.
It is interesting to know that your doctor actually INCrEASED the frequency of Actemra at some point.
And this is exactly my point.
Why would the patient not be told why the doctor decided to do it.???
It is this " paternalistic " approach that scares me actually.
If I request to know or discuss with my doctor it should be treated as a fair request from me right ?
Thankyou again..... and please do let me know if you have any afterthoughts at all.... as I said I have gotten so far , only because of the cerebral discussions on this group.
As much as I know, GCA warrants only Actemra injections. Infusions are not the best option and could cause liver problems and blood pressure fluctuations. I had one infusion initially which did not work for me at all. My BP starts going up very fast and it had to be forced down with drugs literally. After that I switched to Actemra once in two weeks . For me too, my doc now says start spacing it out to once in three weeks just as I have reached 4 mg pred tapering doen from 60 mg. No reasons were given to me for this. That is why I wanted to check on the valued opinions here. Incidentally I suffered with several uveitis incidents over the past 15 years. The GCA diagnosis was obtained only in Jan 2019. I am also sending you a direct message wrt uveitis experience.
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