I have GCA confirmed. I must start on Actemra subcutaneous injection of 162 mg . I very urgently need the following information
1. What should be the duration of the injection ?
2. What was the experience short term or long term ?
3. How many injections were given to you and continued injection at what dosage ?
Thankyou in advance
It sounds like you need to talk to your prescribing doctor and get these questioned answered as a matter of priority. They are perfectly reasonable questions.
Someone maybe able to share their experience with you. I hope so!
GCA: 162mg SC inj once weekly with a glucocorticoid taper; may give once every other week based on clinical considerations. Rotate inj sites. Elevated liver enzymes, neutropenia, or thrombocytopenia: reduce IV dose to 4mg/kg or SC dose to every other week (see full labeling). Do not start if ANC <2000/mm3, platelets <100000/mm3, or ALT/AST >1.5xULN. Transitioning from IV to SC administration: give 1st SC dose instead of next scheduled IV dose.
From here empr.com/drug/actemra/
Sorry no personal experience as PMR only. Probably worth putting Actemra in forum search for people's experiences.
Thankyou very much for the information. . I Will also go through the link properly . It will be very helpful.
I don't understand why you require this info so urgently - you should be started on corticosteroids at an appropriate dose anyway as no studies have been done to show whether Actemra alone will induce remission of the symptoms and the risk of visual loss is such that not to use the gold standard treatment of high dose steroids would represent medical negligence IMHO. Actemra is to be used in tandem with a normal initiation of management with steroids and a subsequent reduction of the dose in line with symptom presentation. This is likely to be much faster than without the Actemra but by no means all patients are able to reduce to zero pred and stop. Some 50% of patients still require corticosteroids at a moderate level. Before I would accept such biologic medication I would expect an intensive discussion with the rheumatologist or, at the very least, an experienced rheumatology specialist nurse, with all the questions I had answered clearly and to my satisfaction.
There is no information on how long Actemra must be continued to ensure continued remission of the GCA symptoms. Longterm studies are ongoing to establish such information but - obviously - take years to come to a reliable conclusion. At present in the UK the duration is restricted to 1 year - there is no evidence that this will be long enough nor whether there will be a return of inflammation and symptoms at the end of the funded period when the injections are to be stopped. It is possible that on stopping the Actemra the dose of pred may have to be increased - there are people on the forums for whom this has been the case.
You appear to have been given very strange information - the subcutaneous injections are a standard 162mg and administered every week or 2 weeks. A subcutaneous injection is a one-off instant procedure not like i.v. administration which may be over a prolonged period of minutes or even hours depending on the substance. Then subsequent injections are given every week or 2 weeks as determined by the protocol or blood test results. The infusions are usually monthly.
If you want to read more experiences with Actemra use the Search HealthUnlocked box on the top right and type in Actemra, being sure to spell it correctly. That will bring up a list of past posts on the topic.
Thankyou very much . Your input is so very helpful. There is very little real-time information about Actemra. My doctor did speak about the infusion vs the subcutaneous option but was not too forthcoming beyond that. You see it is difficult to take hard calls on such medications without long studies available. The thing is I am facing a difficult situation of being diagnosed with Polycythemia Vera AND GCA . Both require different medications and I am in an extremely tough situation juggling the two different specialist doctors. I believe the info you gave me will help me to be better able to discuss medications with both.
However I wonder what are the parameters that point to whether the subcutaneous injection should be once a week or every alternate week ? Please do let me know .......
nejm.org/doi/full/10.1056/N...
i.e. it depends. I think the usual approach is bi-weekly - if that turns out to be adequate. Perhaps your doctor should get the trial results - since as far as I know the s.c .weekly injections are recommended over infusions for GCA. I don't know why. But I would be extremely unwilling to simply be put on it by a doctor who obviously is not au fait with its use in GCA.
As I say, the mainstay of treatment for GCA is high dose corticosteroids which reliably reduce the inflammation and reduce the risk of loss of sight. Actemra does NOT yet come under that classification - it is ONLY a (very expensive) steroid sparer, a medication which allows the amount of pred required to be reduced considerably. But it is to be used together with pred.
I'm also rather confused by the need for "different medications". This up-to-date article on PV refers favourably to conservative management with phlebotomy:
ncbi.nlm.nih.gov/pmc/articl...
I think if I were in your position and were to read the conclusions in this 2018 article from experts, I would be asking for another opinion as to whether the drug approach was necessary:
"Patients with PV should look forward to long and productive life and avoid exposure to new drugs whose long-term consequences are not known and might include acceleration of clonal degeneration into acute myeloid leukemia or myelofibrosis."
New is not always better and often tried and tested approaches are preferable until proven otherwise. This article suggests this may well be the case for you. I would wish to have a longer and more detailed discussion with an expert - not someone who has recently read the highly positive assessment of a new product from a drug company standing to make a lot of money out of its use. Let them experiment in the context of a clinical trial - not on an innocent patient.
I cannot complement you enough on your very studied and informed response. Your point-of -view is absolutely balanced and I need to think carefully on those lines. I currently am on a 500 mg dose of HU and aspirin for the PV. Also am on a high dose of prednisone, and Methotrexate for the GCA. The GCA incidentally has also led to a confirmed Subclavian Steal Syndrome but which has compensated itself by having an alternate blood supply to the left arm. So we will be leaving that alone medically. While the prednisone taper has begun , two weeks ago the doctor now wants to start immediately the TCZ injections - weekly. ( Why weekly and not alternate week - do not know ) . The duration of injections is unclear ( currently for 3 months ) then a we -will -see approach using PET scan to later check on the inflammation response to decide further action ...... As you can see we are in a mess of 3 medical conditions , all extremely serious and the doctors wanting to go in all guns blazing ....... I do comprehend clearly the risk of triggering cancerous changes and demyelination while using TCZ and that is exactly why I am so carefully trying to assess this with the help of the very valuable opinions such as yours ....... I apologize for the long responses but then rarely does one find a highly informed sounding board .......
As I have understood it, GCA doesn't CAUSE subclavian steal syndrome, it is an alternative cause of the symptoms. But I stand to be corrected. Though I suppose if the GCA swelling is bad enough it will cause the SS symptoms. But if there is already collateral circulation that has been there for some time.
If it were me I would want to continue with the pred and see how you get on with the reduction. TCZ doesn't have to be introduced immediately - and maybe you will have a relatively easy reduction at forst, many people do. I believe TCZ should be kept for special circumstances - maybe you are one of those but I would want at least one more opinion with such a complex problem. Can the treatment at least be kept as simple as possible?
Yes I do see your point. Maybe TCZ is better to be kept for use at a later stage if at all . Also I am getting no inputs about how and why and how the doctors decide on the weekly dose / or the alternate week dose . This is really such a “no man’s land “ and one just has to tread at one’s own risk I suppose. Do keep me posted about any additional opinions or thoughts you may have even later ..... Your thoughts have been very very helpful to me indeed . Thankyou is a small word really , and I am grateful
for your support. Regards
It is just a standard dose - I think that tends to be standard practice for biologics, they are issued ready made up. Weekly is standard, I imagine they try will bi-weekly to see if it still holds the inflammation - if it does, it halves the cost and why use more than you need anyway?
My pleasure.
Hmmm yes that thought makes a lot of sense. I will try to discuss all this with my doc. But then doctors are strange beings. They are wary of too many questions all said and done...... Thankyou again 
Hi iwillwin123. Read my post to the pro it might explain some stuff. It also depends on where you live. In the US I don’t know when enough is enough. I started on once a week shots and found that they actually lasted two weeks by experimenting myself. This puts more medicine on the shelf for others and less for me which sometimes less is better. I have been lucky and I would listen to the PRO She seems to be right nut once in a while but all the time. Good luck to you.
Thankyou for your response. Now after I read your message , I am beginning to wonder whether I must insist that we will start only on alternate week dose...... monitor the inflammation indicators of CRP and ESR while reducing the pred at same time progressively. If after that ,the indicators are unstable only then graduate to weekly shots....... This is exactly why personal narratives are so valuable. They give real info which no drug company will put out ...... Thankyou again .
Also completely agree with your comment about PMRpro I can vouch for the fact that she has an extremely informed and studied outlook towards these conditions. More power to your brain PMR pro !
Hi there PMRpro. Long time no talk. So it is six years now with GCA and then on Actemra for the past two years. I have been needing eye surgery for a long time. Stopped the Actemra for 2 Weeks then had surgery. Wanted to begin again and I came down with an vile ear infection. First infection ever on Actemra. Then the knee which was going to be the next surgery because it was behaving gave out. The rest of the body gave out as well. Blood markers indicate ESR jumped to 30 and CRP 14.9. While on 10 mg of prednisone. Back up to 40 mg of prednisone for the week and a shot in the knee. I was wheelchair-bound before the shot. I hope it lasts a while until I can get down on the prednisone and have the knee surgery. I can only assume this all occurred because I stopped the Actemra. Was Doing well for me. Started to garden and physical therapy until I finally went for eye surgery. This was my first infection after starting Actemra. Could have happened anyway who knows. One step ahead and 3 back. My question to you brilliant lady is The best way to go as far as the prednisone reduction. I will take another blood test tomorrow I have only been on 40 for three days tomorrow will be 4 full days. I guess it is possible the ear infection created the relapse it sent me to the ER in the middle of the night and was given antibiotics, drops etc. and 3 days of heavy duty pain meds. So maybe blood will be better. Also had symptoms of headache, Fatigue, and a general feeling of not being well. Those symptoms have gone and now we check the blood. So back to the question where do I go from here as far as prednisones reduction. I thank you from the bottom of my heart. My adrenals thank you as well. How is the weather in Tuscany. It is getting hot in Florida. Time for New Jersey. Don’t know if I can make it. All I did today was make chicken soup and lie on the couch. Hope this gets to you
I think you are probably quite correct that having to stop the Actemra is at the root of the problem - but I have no idea where you go from here. Sorry. Actemra is still rather an unknown in the realm of GCA - having to stop it for RA probably doesn't lead to such dramatic relapses because of the nature of the disease. GCA probably catches up faster.
I suspect you have to start over from the start for now - but since you have only been at 40mg for a few days you should be able to reduce back towards 10mg quickly. The problem will be finding what you can manage with now and what will the surgeon accept.
Me? Not in Tuscany - right up north in the Dolomites mountains. Yesterday and today it nearly touched 70F/20+C with glorious sunshine which , being in the mountains is fierce! But reality will bite on Tuesday for a couple of days. Then should be warmer again - but it is hovering about freezing in the early morning.
Hi lwillwin123,
My wife has been on Actemra for 13 months for GCA. So far-So-Good. She has an injection every Thursday and we only held off for a two week period twice, due to surgeries. The injections last about 10 seconds. And the amount has never changed.
Hope This Helps,
Jim & CJ
Thankyou for your input. Would you be able to tell me
1.how /why the doctors chose the weekly dose over the alternate week option ?
2.how have they monitored whether the Actemra is working for your wife ?
3. As I understood it , the Actemra is to be given for 12 months, so for what reason was it continued further to 13 months in your case ?
I hope I am not putting you to too much trouble answering these queries ..... But then there is such little real- time information available that inputs such as from you will be the basis for me to take a decision about my future course of action .
Thankyou in advance .
Weekly dose was for GCA to allow tapering at regular intervals. Monitored by CRP & Sed rate. There was no limit for use of Actemra. She will use it until her Adrenal glands kick in. Will know more in May.
Jim & CJ
Thankyou very much. This info will help me have a better and fruitful conversation with my doctor.
I believe you are in the US? As far as I know the limit for Actemra, at least under the NHS, in the UK is one year.
Yes that is what was my information too .That is also why I asked the reason for the injections being continued beyond 12 months. .... This is also exactly why it worries me - how is it that the manufacturer has not put out clear detailed information about administering the drug. ......
They have - in the context of the clinical trial. But its general use in GCA is still very new and there are no long ter studies to know what happens beyond the suration of thr trial. It is the same with every new use of a drug. No-one yet knows if the GCA will burn out as a result of the TCZ. Possibly not. RA is a long term disorder and rarely goes into remission. You continue using a biologic as long as it works. It is very expensive and GCA generally goes into remission, it is regarded as a "self-limiting" disorder as is PMR. The problem with GCA is that it is highly likely that it will cause serious side effects, including loss of vision. So some form of management is required - and that is prednisolone/prednisone. All Actemra can do is reduce the amount of pred required. No more can be guaranteed yet.
I am not in Medicine but I have been on 162mg of Actemra/Tocilizumab for about two years. I inject myself every two weeks, on a Saturday in the late afternoon. The first thing is:do not scare yourself, it is not that bad (yes the first 2 or 3 times are scary). As for duration I slowly count to five as I slowly inject the Actemra. My experience with Actemra/Tocilizumab is all positive and I have not had any problems. I was given one injection and the Nurse showed me how to do it after that I have given myself the injections with no problems.
If you are still concerned the Nurse told me to put an ice cube covered with a tissue on the injection site after the shot. You may get some bruising but that is due more to the Prednisone than the shot. The instructions that come with the Actemra shot are easy to understand and are helpful. Good luck with the Actemra, it did help me.
Thankyou for your extremely encouraging message ...... it means so much to me. Please also do update me (if possible )as to -
1.To what extent is the pred dose reduced now owing to presence of Actemra ?
2. How do they monitor the Actemra success in your case ? Is it just crp- ESR or then regular pet scans ?
3.How long do they want you to continue with Actemra ?
Thankyou one more time. It is an inadequate word sometimes to express the comfort that the kind words and advice such as yours , one obtains on this amazing support group .
CRP and ESR are not appropriate for monitoring when on Actemra - I'm pretty sure it says that somewhere. Doesn't stop doctors using them though.
The way Actemra works is to prevent the metabolic path that produces IL-6 and which causes the inflammation. That means there is no trigger for ESR/CRP to be raised. You could measure IL-6 but it is not generally available. However, in some people the GCA remains active and may still be causing damage via another pathway, it isn't entirely clear. But it IS clear that Actemra does NOT work 100% for everyone and it is a fallacy to assume the GCA is gone entirely.
Personally I would not want to have repeated PET scans, This
pubs.rsna.org/doi/full/10.1...
says "Whole-body PET/CT scanning is accompanied by substantial radiation dose and cancer risk. Thus, examinations should be clinically justified, and measures should be taken to reduce the dose."
Most people I know on Actemra are monitored by symptoms - that is the only entirely reliable way of assessing if anything is working for that particular patient since nothing cures PMR/GCA.
I completely comprehend and agree with all the points you made about monitoring parameters. So what I am thinking is that rather than go for repeated PET scans(worry about repeated radiation ) and solely relying upon the ESR-CRP parameters, it will best for me to also ask for a serum IL-6 test at regular intervals to track inflammation.( or at least track the inflamm caused due to IL6). It is available and moderately expensive.I did ask around. I Hope the doctor sees the point.
Thankyou for bringing out the small but very important detail regarding the fact that a normal ESR and CRP looking normal cannot always be trusted as the lone monitoring method. Of course watching out for recurrence of symptoms is still the key, I clearly do understand.
Again Thankyou very much. Your insights are helping me to orient myself much better for the fight ahead.
Iwillwin,
I was put on Actemra because I could not drop below 23mg of Prednisone without a major Flare. I am now at 3mg and holding. I am in no rush to get to zero Prednisone and my Rhuemy agrees, I believe GCA/PMR is a 'time thing' but I am no expert.
I do not get Pet Scans or MRIs now but they do monitor me with assorted blood tests once every three months. I think it is more to catch infections and such than anything else. They worry about Hepatitis and that sort of illness.
I asked the Doctor that and was told it is an individual thing, some people have side effects.
I hope this helps.
Thankyou for your reply. Your reply is very useful to me . Every past experience helps to get a better orientation towards my decision. May I please ask you
1) how long you are on Sctemra now?
2) is it injection or infusion ?
3) Have the doctors indicated to you how long you will be given Actemra ?
Thankyou and regards
Iwillwin,
I have had GCA/PMR since 6/2016, I have been on Actemra/Tocilizumab since 6/2017.
I give myself an injection once every two weeks. I have never had an infusion.
The Doctors/Rhuemies have not said how long I will be on Actemra but they (two Rheumies) said the GCA lasts about 5 or 6 years and that I would have to see how I tolerated the Actemra and Prednisone over time.
I hope this helps.
Stopping Tocilizumab/Actemra injections
Actemra injections. USA
GCA and Actemra.
Urgently Requesting Help & Support.
3rd injection of ACTEMRA 
