GCA,Actemra, Prednisone and IL6

[Iwillwin123]

I have GCA diagnosed since 4 months.

I am on Actemra 162 mg subcutaneous since a month.

I am also on 30 mg prednisone currently though have stepped down from 60 mg over last three months.

On advice from some of the well- informed people here, I have been testing for my ESR and CRP which had settled down to normal immediately after I started the pred 60 mg dose 3 months ago and the ESR and CRP remains normal even now .

A month ago I started the Actemra injections and have tested my IL6 levels since then.

However what I find is that the IL6 levels are continuously rising - 162,183,264......

The normal range is between 2-7.

What could this indicate ?

Also I am not on any other steroid sparing drug ,only on Actemra and continuously stepping down on the prednisone.

Am very keen to seek opinions on this platform about this.

Also whether anyone could recommend any expert who could opine on this outcome ?

[PMRpro Ambassador]

I fear there is noone on the forum who is qualified to comment on this - we are all patients and few of us have much experience with Actemra, those who have have generally either had success or been forced to stop it because of side effects.

I have written to a renowned physician specialising in PMR/GCA to ask her advice but I don't know how long it will be before she expresses an opinion, if indeed she feels able to do so.

[Iwillwin123 in reply to PMRpro]

Thankyou very much for writing to the physician. It will indeed be a boon if she chooses to respond early. I just hoped that there may be someone here who may have tried to measure the Actemra success using IL 6 as an indicator rather that just relying on ESR and CRP. In fact if you recollect we had discussed this approach in an earlier exchange.

What worries me is that I have stopped Methotrexate since the doctors feared it was the cause for an episode of tongue claudication that I experienced while on MTX.

I therefore wonder if I am relying too much on Actemra alone as a steroid sparing drug, where actually it may not be working for me after all.

I am currently stepping down the pred dose from 60 to 30 currently and progressing lower.

So I wonder if it is better I go back to the MTX or some other steroid-sparer after all.........

I cannot express how comforting it is to have people such as yourself to opine and discuss these things here.

I view it is literally as having a surrogate family .........

[PMRpro Ambassador in reply to Iwillwin123]

She says:

"No need to panic. It’s totally fine and expected. IL6 rises as part of acetmra treatment – there is lots of inhibitor around so body makes more IL-6 to compensate. But because of the inhibitor (actemra), the signaling (biological action) of that IL-6 is blocked so the high levels shouldn’t have any adverse consequences. It just shows the actemra is working…"

So you can stop worrying - and probably wasting money on the testing!

What she would like to know is how you got it measured, is it affordable! How was it done as it is normally a relatively expensive test - and why it isn't used more often in monitoring PMR/GCA! It isn't a reliable diagnostic test but would be useful for tracking.

[Iwillwin123 in reply to PMRpro]

This is just wow !!!!! I mean that you cared enough to write to the physician and that she cared enough to resonate immediately !!!!

Well,I am extremely relieved to hear this. I am astonished that I find the most reliable information here every single time .......

The IL6 test is done by a few specialised laboratories here.

It is not cheap but not,prohibitively expensive either.

The labs which do the tests have a well qualified post graduate MD in pathology doing this test.

The reason that I guess IL 6 is not being used much is lack of knowledge about GCA as well as the lack of awareness about using IL6 as a possible tracking tool.

GCA is after all a very rarely observed condition and perhaps also very much under reported too.

Which brings me back to the fact that it is support sites such as these which play the stellar role of giving a true picture of these rare conditions as they unfold in the populations globally.

Maybe one could do a study by collating all the realtime experiences and advice one finds here.

May you be blessed for fishing this comforting information out for me. I will sleep better tonite for sure

[Iwillwin123 in reply to Iwillwin123]

Also if it is of any interest to the dear physician who kindly responded ,the IL 6 test here is done by the CLIA method.

[PMRpro Ambassador in reply to Iwillwin123]

"The reason that I guess IL 6 is not being used much is lack of knowledge about GCA as well as the lack of awareness about using IL6 as a possible tracking tool."

Don't think so - it is a case of availability outside hospitals with an active research facility and cost and that it isn't really an improvement on the others as it has similar downsides in terms of variability. Funding is ALWAYS a problem!!

Is your testing paid for by your insurance? Or are you self-paying?

She is a very lovely lady

[Iwillwin123 in reply to PMRpro]

Yes true it is, what you say....... The IL6 test is not covered under insurance at all. Though I do have insurance they are very specific about what they will pay for. This test therefore is not covered.The laboratories here doing specialised tests do not need to be within a hospital necessarily.There are plenty that function as individual entities and are very good.

[PMRpro Ambassador in reply to Iwillwin123]

So may I be rude and ask what sort of cost you are looking at here? If you don't want to say it in public pm me - but Prof M is interested in cost for research purposes.

[Iwillwin123 in reply to PMRpro]

Please do not believe I am kinda dumb, but how do I inbox you ? Should I just hit the message tab on your page ? It is not that the cost etc is top secret but just that I do not want to bore the rest of the surrogate family here with details of research costs etc .............

[PMRpro Ambassador in reply to Iwillwin123]

Not dumb - this forum is hardly intuitive!!! Yes, click on my name and my page comes up, Message is at the top right corner. Then it is just like writing a post.

[Hidden in reply to PMRpro]

You guys are amazing. Truly amazing

[Iwillwin123 in reply to Hidden]

Totally agree that the people here are really the ones who care and understand about what is going on......PMR Pro is very well informed indeed and kind enough to share her knowledge and expertise in quick response ........

[PMR2011 in reply to Iwillwin123]

PMR diagnosed in 2011 then GCA in 2017. Been on Actemra 1 1/2 years. Off Prednisone since Feb. pretty much go by symptoms on Actemra. Do check IL6 every 4 months or so simply to get a sense if the disease is still active. Insurance pays for all but $6 of the test which cost about $80. Live in northeast US. Has worked well for me.

[Iwillwin123 in reply to PMR2011]

Thankyou for your response. It is very encouraging to know that you have a good experience with Actemra. There are three questions though ........

How long have you been advised to stay on Actemra ?

Do you take it as injection ?

Is the dose weekly or once in 15 days ?

[PMR2011 in reply to Iwillwin123]

I self inject weekly which is what has been approved for GCA. There are no guidelines as to how long to be on it. Typically after being symptom free for several months will start to lengthen the interval between injections (10 days, then 2 weeks etc) and wean that way. Hoping that more studies on Actemra with GCA will be published soon to provide more guidance.

[Iwillwin123 in reply to PMR2011]

Your input is extremely helpful . I have been searching for days in all research papers for info about the duration of Actemra use........ As usual this platform was the most accurate in terms of information - since you were kind enough to respond . I have had issues with oscillating Blood pressure due to Actemra. Hence I increase my HT medication 3 days before I take Actemra and monitor and adjust the medication for upto a week later. The BP oscillates between 160/120 and 130/90 for upto a week ...... Thankyou again .

[PMRpro Ambassador in reply to Iwillwin123]

It occurs to me to say: there are no guidelines as to how long you need to be on Actemra. What has been designated in the UK (and other countries I think) is that it should be funded for up to a year.

The clinical study established it works for about half of patients to get off pred and to reduce the dose considerably for most others. It is still running to establish likely durations of Actemra-induced remission - that is something that will take years of use to find out.

[Iwillwin123 in reply to PMRpro]

Exactly ! All I ever found was a reference of 1 yr. Basically therefore those of us who are using Actemra are in the twilight zone of trial and error . There was also the angle of cost to benefit ratio which was spoken of in the past.......

Which brings me another interesting paper that speaks of treatment for Varicella Zoster along with other standard treatment for GCA showing good outcomes in terms of remission ........ would like to know your opinion if any about that as well .....

[Iwillwin123 in reply to Iwillwin123]

academic.oup.com/jid/articl... Please do view this paper

[PMRpro Ambassador in reply to Iwillwin123]

That research has been assessed by some experts as poorly powered. It hasn't been replicated. And many patients who don't have signs of VZoster also develop GCA. I suppose adding in the antiviral treatment is unlikely to do harm - but there have been patients on the forums who haven't had any benefit ith antivirals.

It has been discussed it in the past - but I don't know where that discussion is and I really haven't time to dig it all out again, I'm sorry.

[PMRpro Ambassador]

I'm not hostile. It has its role. But it's role is not as an immediate replacement for pred and, IMHO, most certainly not in PMR. If anything I would say I am sceptical.

It is a new option, it is probably a good option for patients who have severe GCA problems but it isn't a viable financial option for widespread use for PMR and it is also not yet known what the long term results are in PMR/GCA. If you trawl through the forum you will meet several people who have been put on Actemra with perfectly good reasoning and who are having great difficulty with it in terms of side effects or it not working. Any patient who can reduce their pred dose to below 10mg pred does not need to be exposed to the potential risks of a biologic. And. regretably, cost remains a factor in how we are treated.

As Iwillwin says - we are in a twilight zone of not knowing.