The Actemra journey ...

[LemonZest11]

Hello Everyone,

It’s been several weeks since I was on here seeking advice about the PET scan and its efficacy in regard to GCA diagnosis. Because my CRP was 110 and ESR 53, Rheumatologist suspected GCA because, at 10mgs pred, the bloods were still high. She was right, and large vessel vasculitis was diagnosed. Next move was Actemra but after a truck load of tests to ensure I would be a suitable candidate. Doc gave me two injections and sent me off to the nurse to “learn” how to administer, by which time my approval from Medicare should have come through. Long story short, the approval was granted, got lost in the mail, missed a week of Actemra but doc organised approval over the phone and I begin the injections again tomorrow. My question is ... what is this going to do for me? Doc has explained that it should help me get off the pred, but I know PMRpro has mentioned that this doesn’t always happen. I am tapering oh so slowly, on 9.5/9mgs at the moment, it’s taken weeks to get here from 10mgs. I feel quite good but always anxious about the taper, since two rather large flares not so long ago. And last question ... what is the difference between temporal arthritis and large vessel artiritis? Are they the same? Am I still at risk of the horrible effects of GCA?

Thanks for listening, I really know nothing about Actemra.

[SheffieldJane]

Hi LemonZest11. It looks like we are both awake and worried, at opposite ends of the clock.I know Actemra has been discussed a number of times on here, so a search might be worthwhile. I can’t really answer your questions because I simply don’t know much more than it was hailed as the latest thing to support Pred treatment of GCA but has significant side effects. I imagine the overall aim is to shorten the duration of the illness, it’s attendant risks and steroid therapy risks.

Using different terminology can be quite confusing. Temporal Artiritis is Giant Cell Arteritis by its old name and yet it accurately describes where it is usually located. As I understand it Large Cell Vasculitis is an umbrella term for the condition located in any Artery like the Aorta, upper limb, lower limb. I will be corrected in the morning but my doctors seem to use these terms interchangeably. I hadn’t thought much beyond diagnosis of GCA ( thinking that this represented safety from the severe eyesight risks) I don’t really feel safe yet.

So all this is saying really is hi there worried friend, I’m worried too and I wish I was in Australia. X🌺

[LemonZest11 in reply to SheffieldJane]

Hi Jane,

Oh poor you still awake ... it’s 11am in the morning on a simply gorgeous day here, so I hadn’t really expected to hear back for a while. I hope sleep comes to you soon. Yes, it is a worry isn’t it? I know GCA has affected my aorta because I get deep pain in my chest from time to time, not as in heart but down the centre and it is a though you can feel all your arteries complaining. I remember we discussed the PMR “hug”, which I now believe to be GCA.

How are things going for you over there ... we were supposed to be visiting in August but sadly that must now wait. Bring on the vaccine I say!!

Thanks for you thoughts Jane, much appreciated as always. Xx

[SheffieldJane in reply to LemonZest11]

11 am! So that’s quite civilised. Where can my Aussie family be? They were coming this month 🥺 we were going there in October 😢. All off I guess.

Have they scanned your Aorta and diagnosed you formally? My Aorta ( Heart) Scan was clear. This abdominal symptom is new.

I went through a phase of trouble with Oesophageal Spasms ( so painful) and caused, I think, by the corrosive effects of steroids on the gut. Like swallowing a large pebble and it being stuck - sips of cold water helped. I guess that will be back on these GCA doses.

The birds are singing a dawn chorus, that is my cue for sleep. Have a lovely day. Our weather has been tantalisingly, tender, spring days.

[LemonZest11 in reply to SheffieldJane]

Sounds idyllic!

I had a PET scan so they have seen everything ... very detailed discussion of my inflammation came out of that, hence the diagnosis. Oh well, let’s see what Actemra will do. I hope someone on here knows a bit about it.

Sleep well Jane.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Official definition-

GCA is classified as a large-vessel vasculitis but typically also involves medium and small arteries, particularly the superficial temporal arteries—hence the term temporal arteritis. In addition, GCA most commonly affects the ophthalmic, occipital, vertebral, posterior ciliary, and proximal vertebral arteries. Medium- and large-sized vessels that may be involved include the aorta and the carotid, subclavian, and iliac artery.

[LemonZest11 in reply to DorsetLady]

Oh thanks for that DorsetLady, I am quite ignorant of the disease. I had assumed that, because my doc referred to it as large vessel vasculitis, GCA must come in different forms. My PET scan indicated that “within the limitations of FDG PET, no sinister intracranial uptake is appreciated. No abnormal uptake is seen at the upper aerodigestive tract or at the lymph node stations of the neck”. There is diffusely increased activity associated with the medium and large vessels (musculoskeletal), with uptake greater than liver in keeping with the clinical history of vasculitis. It also mentions the left iliac crest. This is pretty much gobbledygook to me. I’m trying not to worry, hoping the Actemra does whatever it is supposed to do.

[PMRpro Ambassador in reply to LemonZest11]

Does this help?

“within the limitations of FDG PET, (the brain clouds the vision because it takes up a lot of glucose)

no sinister intracranial uptake is appreciated (but there is no sign of anything nasty in the head)

No abnormal uptake is seen at the upper aerodigestive tract or at the lymph node stations of the neck”. (no increased uptake in the gullet or airways or in the lymphnodes in the neck - i.e. no sign of inflammation/malignancies there)

There is diffusely increased activity associated with the medium and large vessels (musculoskeletal), with uptake greater than liver in keeping with the clinical history of vasculitis. It also mentions the left iliac crest. (There is some general increase in glucose uptake in the larger arteries supplying the muscles, more uptake than seen in the liver - fits with the suspected diagnosis of inflamed blood vessels.)

Do you have low back pain? Piriformis problems? Could be PMR inflammation.

medicalnewstoday.com/articl...

healthline.com/health/iliac...

[LemonZest11 in reply to PMRpro]

Yes, thank you, that does help. I do have mild low back pain but I have quite a bit of damage at L4/5 which is unrelated. Just moving on to read your next post.

[PMRpro Ambassador]

GCA is giant cell arteritis (ARTERITIS, inflamed arteries, LVV is large vessel vasculitis, inflamed blood vessels, not necessarily arteries) - large cells form with more than one nucleus. These are what cause the swelling. When a temporal artery biopsy is done they can SEE the giant multinucleate cells and so they can be very specific in saying it is GCA. The inflamed arteries can occur all over the body - but nowhere else is it possible to take a piece out of the arteries to look at and see the cells except if they do proper surgery in theatre and with a long recovery time and that is simply not possible even when you know a particular artery is affected. It isn't that GCA is specific to the temporal artery - they thought it was in the past but modern imaging shows that isn't really the case. DL has listed the most commonly affected arteries - they identify that during post mortems.

PET-CT shows the presence of inflamed tissue pretty much anywhere in the body - it takes up more of the radioactively labelled glucose that is in the infusion they give you. But it can only show it is inflamed, not what sort of inflammation it is - it could be giant cells, but they only commit to that when they can actually see them.

Not sure what your doctor would say but I would wait a few weeks on 10mg until the Actemra/tocilizumab is working - I don't think it happens immediately. The tcz will reduce the effect of the IL-6 in the creation of the inflammation - and then you should be able to reduce the pred providing that is the only pathway that is creating inflammation. In the trials they used a steady taper over 6 or 12 months - but they were done in patients who had not been on pred for long or at all so the problem of adrenal suppression was less. Once you get to 5mg (more or less) the tapering of pred is also related to that, not just avoiding a flare of the symptoms, and even with tcz that remains a factor. You still have to reduce slowly enough for the adrenal glands to keep up with producing enough cortisol for the body to function, independently of whether the tcz has the inflamamtion under control.

[LemonZest11 in reply to PMRpro]

Oh you are bloody brilliant PMRpro!! This make sense, and I’m starting to understand. Perhaps it is just the PMR ... will the Actemra help in reducing inflammation related to PMR? All the literature states that it is effective for RA and GCA, but no mention of PMR. I am currently between 9.5/9mgs, on a very slow taper. I feel reluctant to go back to 10 since I feel quite well, apart from the usual niggles that are probably related to age rather than anything else. Thank you sooo much for taking the time to explain things to me. I do so appreciate it, and also DorsetLady’s comments.

[misha453]

I have been taking Actemra injections for 9 months now. I started it to control a GCA flare but it also controlled the PMR flare that I was having. I saw improvements in my symptoms in the first week i.e., reduced night sweats, headache pain and improved shoulder, hip and neck mobility. Symptoms continued to improve and I started reducing Prednisone after 8 weeks. I was not able to taper as fast as 1 mg a month as I have been on Prednisone for 4 years for PMR and 2.5 years for GCA. I use a slow taper and decrease 0.5 mg at a time. It is still not a pain free process but my fatigue is improving and I have been able to do more so I believe my adrenal function is recovering.