For our GCAPro. Surgery/relapse

[Nap1]

In February I had minor eye surgery. At 10 mg plus Actemra.I stopped Actemra two weeks prior and developed an ear infection at the third week. It was quite horrible antibiotics and pain meds. ESR jumped to 30 and CRP to14. Went back up to 40 mg numbers came down. Reducing 5 mg a week. In the interim white count went up to 22.5 which required a hematologist. White count went down to normal then back up to 15. We did rule out Leukemia.

I am trying desperately to get a knee done for three years now but run into relapses. . My question here is how quickly can I continue to reduce while still on Actemra? Dr. will not operate until I am down to 10.Was scheduled for surgery three days ago but that went by the wayside. I am aware that Actemra is not used as much in England or Europe. I am looking for an opinion it seems most people can get down very quickly while on the shots. I have to stay at 10 for my adrenals. All of this is pretty scary. I need several more eye surgeries but the knee is pretty important because all else is failing with the steroid myopathy. My New Jersey rheumatologist believes I can go down quickly while on the shots. I would like to hear what you folks think. Thank you very much. Marilyn

[PMRpro Ambassador]

You can reduce quite quickly while on Actemra if you are one of the 50% or so for whom it works well. The trouble may be developing infections - it is an immunosuppressant and that opens you up to the risk of infection as you have found. I don't think it is possible to definitively predict how quickly you can reduce - the study did different fixed approaches which can be seen on p6 of this

nejm.org/doi/suppl/10.1056/...

In the 26-week taper with Actemra patients dropped from 40 to 10mg over a period of 8 weeks and over 10 weeks in the 52 week taper.

[Nap1 in reply to PMRpro]

Safari couldn’t open the page because of too many redirects. Could you possibly send the link separately to ... (email removed by Moderator)

Thank you. I would imagine it was 5 mg a week and then 2 1/2 between 15 and 10. That’s on shorter schedule. Considering I have been on so much steroids I think my body could handle it. My other thought was perhaps if I did nothing and not gone up...the antibiotics would have brought down the infection and maybe the blood numbers would have righted themselves. I do have serious Eye inflammation which could be keeping the ESR up (when off Actemra) as well as serious osteoarthritis in my entire body. An inheritance. I’m sure ESR covers more than GCA and PMR. Yes?

[DorsetLady PMRGCAuk volunteer in reply to Nap1]

Marilyn,

You really shouldn’t post email address on open forum - are you able to copy and paste you reply and then message PMRpro?

[PMRpro Ambassador in reply to DorsetLady]

Sorted by the power of moderation

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Good

[Nap1 in reply to DorsetLady]

Don’t know how sorry.

[DorsetLady PMRGCAuk volunteer in reply to Nap1]

It’s okay, herself has sorted it. But for future if you want to pm someone just tap on their picture which take you to their profile and then select the Message button.

[PMRpro Ambassador in reply to Nap1]

To edit a post look for the More box with the downward pointing arrow in the bottom right corner of the post - drop down menu lets you Report, Edit and Delete your own post, Report someone elses's.

[PMRpro Ambassador in reply to Nap1]

I've taken your email out - this is a public forum and there have been a few strange people about recently!! But I have also sent you the link

Oh yes - ESR is a very non-specific marker, all sorts of inflammation will send it up. Including pregnancy - not that I'm suggesting that for any of us!!

[Nap1 in reply to PMRpro]

Love is in the air. In Italy 🇮🇹. I live in a 55 + community. Only pregnancies we see are great grandkids. 😇

[SnazzyD in reply to Nap1]

Yes, your infection will have increased the ESR, especially when you did’t have the double immunosuppressant effect of Pred and Actemra together. Anything that causes a lot of inflammation may affect your ESR. Your raised white cell count would have also been raised by both the Pred, which stimulates production of Neutrophils anyway, and the infection.

[HeronNS in reply to PMRpro]

Link doesn't work. Chrome.

[Nap1 in reply to PMRpro]

Well eye surgery failed. conjentiva has grown (grossly) back. Sad. Was supposed to see surgeon yesterday but he was sick. The nerve of him. Doctors don’t get sick lol. Still reducing. Pulmonary embolism didn’t raise numbers. I think I will go from 20 to 15. Only minor discomfort from the reductions for a few days. Must get this eye fixed or I’m in trouble. Now have to deal with Eliquis and Actemra. Surgeon said most difficult case ever. What do you think. Will check with Rheumy too. Thank you. Marilyn

[PMRpro Ambassador in reply to Nap1]

I really donlt know anything about it at all, sorry.

[Nap1 in reply to PMRpro]

Thank you. How are you feeling.

[PMRpro Ambassador in reply to Nap1]

Better! Black and blue in some places, nothing to see in others but feel bruised It'll all come out in the wash

[PMRpro Ambassador]

This is the link to the original abstract:

ncbi.nlm.nih.gov/pubmed/287...

This is the link to the free full text:

nejm.org/doi/10.1056/NEJMoa...

and you will find the link to the Supplementaty Appendix in the text and right at the end of the text after the Affiliations

[PMRpro Ambassador]

The full set of links is in my reply below.

[PMRpro Ambassador]

The assumption is that GCA is a heterogenous disorder with more than just IL-6 involved - which is where Actemra is targeted.

[Hidden]

This has a focus on pmr, pred use and adrenals- i know its something you are concerned about. Its "old" and i only have a phone to pre read it on. But i thought id take punt!

ncbi.nlm.nih.gov/m/pubmed/1...

[Hidden]

You might read the conclusion which seemed to blame pmr, i.e. that the number who had subsequent adrenal.issues had them pre pred. As i say i am trying to read and understand all this on a tiny smartphone!🌻

[Hidden in reply to Hidden]

And my eyes are tired 😂👀

[Hidden]

Try this one too 😂😂😂

ncbi.nlm.nih.gov/pmc/articl...

[Nap1]

I Have had an endocrinologist for three years now. He started out with other parts of my body and now it is adrenals as well. So far I am very happy with Actemra. Thank you for responding.

[Thelmarina]

Wishing you luck - sounds as if you are thoroughly in the wars, and the symptoms are so uncomfortable. Thank goodness your care sounds on the ball, although as usual explanations are limited which is why this Forum is such a boon!

[aladymo]

What is the difference between Actemra and Methotrexate? ( excuse my ignorance) Are the used for the same purpose? One better than the other ? Different countries perhaps preference? .

[PMRpro Ambassador in reply to aladymo]

Methotrexate is a DMARD, been in use for well over 30 years for RA and it is claimed it potentiates the effect of a given dose of pred so you can manage on less. It probably doesn't have a direct effect on the disease process of GCA/PMR and may or may not work. It has a lot of common side effects including nausea, hair loss and fatigue. It is cheap, £s per month.

Actemra, otherwise known as tocilizumab, is a biological drug, has been used for RA for about 8-10 years and has only recently been approved for use in GCA. It isn't approved for PMR although there are US doctors who are using it. As a biologic it has some considerable potential side effects but it really does work to reduce the pred dose in GCA since it acts directly on the production of IL-6, the substance that actually causes the inflammation. Some people are able to get off pred, others only get to a significantly lower dose. It costs IRO £12K per year - and although it is hoped that it would need to be used for only a year or so there are not yet any figures for how long any remission lasts. In the UK it is only approved for complex or prolonged cases of GCA and can only be funded for a year.

If you enter Actemra in the search box you will find previous posts about people's experiences with it.

[Dream21]

Actemra has worked great for me. I still went down slowly. I did not experience relief from prednisone side effects because I was on Actemra.

I wish people would be more open to this medicine. I feel judgement (negative) about this drug. This drug has been a life saver for me. If you are not taking it or do not need it, do not judge.