IL-6 blockers may usher in "new era" of giant cell arteritis treatment

This may be old news to a lot of you...

healio.com/rheumatology/vas...

[DorsetLady PMRGCAuk volunteer]

Hi,

“Unizony stressed the importance of these developments, stating that, up until recently treatment for GCA was limited to corticosteroid therapy, which he described as “suboptimal. He noted that corticosteroid use resulted in toxicity in about 4 out of every 5 cases, with large-artery complications seen in approximately 30% of patients. In addition, disease flares are common, with 40% to 80% of patients with GCS treated with corticosteroids experiencing relapse.“**

** not if patients are tapered correctly. I was on Pred for 4 & half years and never had a relapse.

Why? Because I tapered slowly. Despite my original GP not diagnosing GCA, she did eventually manage it well (until I moved surgeries) as did my current GP. No intervention from Rheumy either - maybe that’s the answer!

[Mombeck67]

I'm sorry, but it's not all good news with Actemra. Yes, the drug manufacturers want us to believe Actemra is the answer and for some, it is. On the flip side, much is still unknown regarding side effects and each of us is left to weigh the pros and cons. I'm on 70 mg of Prednisone for GCA and I have not decided if I will take Actemra if the time comes. Here is an article that gave me much to think about: statnews.com/2017/06/05/act...

[PMRpro Ambassador in reply to Mombeck67]

It is NOT that it is more risky than other similar drugs for RA - it is that they did not publish the figures that showed it was NO BETTER than the others. Which conferred a benefit in the perception of many doctors.

There is plenty of information about side effects in the relative shortterm - it has been in use for several years already. It isn't perfect, no, but it has some good points.

[SheffieldJane]

It’s Actemra isn’t it? Recently agreed by NICE for use in cases of GCA, which you could discuss with your doctor to see if life, for the duration of this disease,would be better. 🏖🌈 Where’s my mask? 👺

[Hidden in reply to SheffieldJane]

It is, indeed.

Your Mask is still being conceived.... Rimmy & Ruth's masks are on the production line, as we speak!

Word of advice... be careful what you wish for, you just might get it!!!!!! ; )

[SheffieldJane in reply to Hidden]

I meant Monbecks link not yours. I know I felt a shaft of fear when I asked about my mask - shade of Dorian Grey. 😉

Thanks for the link. Glad the debate is being had. X

[Hidden in reply to SheffieldJane]

Ohhhh sorry!

[Hidden in reply to SheffieldJane]

NO FEAR ever! Your mask will be as spectacular as you are!!!!! Even in Dorian Grey Grey!

[SheffieldJane in reply to Hidden]

My brother in law made all his Facebook friends a superhero for charity. He made me The Invisible Woman. Gee thanks!

[Hidden in reply to SheffieldJane]

Hahahahahahahahahahaha!

[SheffieldJane]

I think we have had sight of the above link before and found it concerning to say the least. Do you recall M?

[Hidden in reply to SheffieldJane]

Different link, as this article is new, dated April 28, 2018.

I guess it's news because Sebastian Unizony, (MD, of Massachusetts General Hospital and Harvard Medical School) said during a presentation:

“It is a better time to have giant cell arteritis, if you are going to have it,”

Cool. I'm happy to know that I got GCA at the "BEST" time! : )

[Rimmy]

Thanks Melissa - it's always good to be made aware of anything the medical world is discussing about PMR/GCA treatments. Although this isn't exactly very 'new' - and has been beneficial for some and not others as the speaker states in the article - for me it's a still 'wait and see' in the development of these IL6 drugs.

For those who have been taking corticosteroids for a 'long' time it appears some may be able to taper more quickly (that's the 'best' effect in the info I've read so far) but others have reported less success and some unpleasant side effects. These are impressions only and my perceptions are not 'scientific' at all of course - just deduced from general information on the Net.

I personally would still be hesitant about their use - but on the other hand I have been taking Pred reasonably 'successfully' with just a few minor hiccups until now - from high doses to moderate now 17 months later. My 'side effects' have so far been limited and manageable so not sure if I would be included in the definition of 'toxicity' caused by Pred. In fact aren't all drugs are 'toxic' to some degree - so adding another - which has as yet only limited evidence of 'success' in some (and not on its own) and which has countervailing evidence of bad effects for others seems sill a bit 'dodgy' to me. I'd need a lot of convincing to take them currently. But this is not to say this class of IL6 drugs cannot be developed or modified further and that they will not be more useful in the future - we must keep our eyes on these - and any other developments of course. The fact drug companies 'market' or promote new drugs is something which is always a consideration - but unavoidable in our (Big Pharma) world of pharmaceuticals I think.

Thanks again for posing this my friend

Rimmy

XX

[PMRpro Ambassador in reply to Rimmy]

"which has as yet only limited evidence of 'success' in some (and not on its own)"

The improvement in pred dose was significant. And it is only not used on its own because it would not be ethical to assign some patients in a trial to an as yet unproven drug when it is known that corticosteroids ALWAYS work providing the dose is adequate. Those patients given the test drug would be exposed to the risk it didn't work on its own - and could lose their sight. Since it is irreversible it is a serious ethical consideration.

[Rimmy in reply to PMRpro]

Thanks PMRpro for that clarification - but I am wondering then given those constraints just when, if and how its effectiveness could be proven 'on its own' ?

[PMRpro Ambassador in reply to Rimmy]

Why does it need to be? If it does work itself - then the pred reduction will go so fast it isn't a problem but the patient is safe. There are patients who don't manage to get off pred altogether despite TCZ. It probably reflects that there are multiple factors involved - and pred seems to work for them all. There are other similar MABs in the pipeline - but all may be slightly different.

[Rimmy in reply to PMRpro]

Thanks PMRpro I see your point - I guess it is the 'multiple factors' which IS the central issue and whether it is a 'good' idea to add another drug to the mix which 'may or may not' assist different individuals. I realise it is difficult for some people to get off pred so it is obviously then a personal choice - if you have access to it of course.

[Jackoh]

Thanks for posting Melissa. Just glad that this seems to herald a new look at GCA and what can possibly be developed from now on rather than nothing for the last 50 years or so. As you say good to know we have GCA at the right or a better time than before. 😜I'll have to keep telling myself that!! 😳Xx

[Hidden in reply to Jackoh]

Yup, me too!

"I have GCA at the best time! I have GCA at the best time! I have GCA at the best time! I have GCA at the best time!"

Yeah... I'm still wishing I had it in 2040..

Oh, "You'll be dead," you say?

Yeah that's about the right time! ; )

[Jackoh]

Ha ha! Too true