Actemra Trial Update

[cmgarner]

This is an interesting article regarding the 2 year follow up of the original Actemra trial.

apple.news/APxvd6gUCSmeN97U...

[PMRpro Ambassador]

Wonder how THAT will impact the NHS policy of 1 year and stop ...

[Blearyeyed in reply to PMRpro]

Or , how slowly they get around to starting in the first place!😋

[Ronnie101 in reply to PMRpro]

Is this now available widely on the NHS?

[PMRpro Ambassador in reply to Ronnie101]

Not widely no. Only for resistant GCA where the patient has relapsed more than once or is unable to reduce the high steroid doses required for GCA. I think they must also have failed other steroid-sparer options or be unable to try them. Its use is then restricted to one year.

[jinasc]

Just in case anyone thinks there are no side effects (all drugs have side effects|). Actemra was licensed for use in RA a few years before it was licensed for GCA.

rxlist.com/actemra-side-eff...

[Blearyeyed in reply to jinasc]

Absolutely ! Even the simple multi vitamin or paracetamol.

What's good for one isn't always good for another . All drugs have their side effects and the body needs to get used to the changes that those chemicals do to it before it settles down and a medication ( conventional or complementary) can begin to have a therapeutic effect.

A properly tested and trialled Medication , and its success , is always a matter of trial , error and adjustment because every Patient is different .

I'm still waiting for Actemra , and I'm hoping it can be just what I need , but I'm being realistic. I know that it will not be capable of creating a ' miracle' and will come with its own issues that need to be balanced or judged.

Thanks for adding the extra article and adding such an important point in your reply. xxx

[Spanky2019 in reply to Blearyeyed]

My rheumatologist just prescribed actemra for me. So very expensive, Dr is trying to arrange coverage. I won't go on if insurance won't cover. Scary to go on another heavy duty drug.

[Blearyeyed in reply to Spanky2019]

Yes, it is expensive , if I had to pay for it myself I don't know if I could , but with my condition as it is , and the various health conditions I have making it impossible to take steroids long term at higher doses or take steroid sparers , this could actually be my only option if I want to get back on my feet.

It can be scary , especially if you are new to taking various drugs or medications.

None of us would take these drugs if we had a choice , just like a Cancer Patient wouldn't choose Chemo or Radio therapy , but sometimes we need to in order to get some Health and Quality of Life back.

With Chronic Health issues you need to look and see if the benefits of a drug outweigh the side effects , Doctors do the same , they don't put you on medications lightly and they will choose the drugs with milder side effects first before opting for others.

I think we do need to be aware of side effects but also remember what this drug is being prescribed for , and most importantly, how taking it could make a Positive Change in your Health . Unfortunately , we can get into the habit of looking at the research , or the leaflet in a drug box , and instantly looking for the side effects list and getting bogged down in the Negatives rather than the reasons for taking it first.

As long as the drug has been well trialled , for any Patient whether it works or you get side effects is always trial and error .

Everyone takes time to adjust , some will not do well with it , but many more will have no problems with it at all . Unfortunately , it doesn't help that when you ask for advice about a drug people whom have get the best results from it often aren't on Health Forums able to give a testimonial of how much better their lives are with it . Why? because it's working so they are out living their lives. You often here more negatives than positives on a Health forum because more users are often still looking for answers , it doesn't mean the Positives aren't happening . And, if it isn't for you , you can always stop taking it .

My perspective is , it's always better be hopeful and try a treatment rather than letting Fear of the Unknown put me off and then perhaps miss out on just the thing that could change my Life for the better.

[Spanky2019 in reply to Blearyeyed]

Thank you and yes, it is easy to get skewed opinion of drugs "potential" side effects. I'm going to trust my rheumatologist & chill for awhile longer. Also, feeling better in most ways now that back on the 40 mg prednisone. Need to think about this a little longer before writing about it, but I (we all?) are going through grieving process with all the stages. It is 6 in the morning and my mind wants to jump out of bed and enjoy the view of oer a foot of snow. My body, well... just stay in bed knowing that no one else is going anywhere until they get plowed out. Have a great day/night!

[Blearyeyed in reply to Spanky2019]

I know exactly what you mean , perhaps cuddle up in a blanket with something warm and enjoyable to drink and enjoy the view.

And you are making good choices , taking the time to think things through , then coming back with a post asking all the questions you want views on about a drug when you know your closer to having to consider new things us a really positive way to get control of your own Health Journey. Take care

[Chrisellie]

This is exactly what I was told. 😁🤞

[Devoid]

Hi I’m having trouble accessing this, can you please give me a tip how to

[Hidden in reply to Devoid]

If its the poster's link try this

creakyjoints.org/treatment/...

[Devoid in reply to Hidden]

Great, thanks for that, I am on actemera,4 weeks in and some improvement at last . My consultant said following the cat pet scan results that actemera would be the preferred option but I did 16 weeks on high dose steroids and weekly methotrexate before the actemera was started. Nice acknowledge that in cases where the inflammation has spread to aorta and vessels off it’s less likely to be responsive to steroids but haven’t suggested any earlier start for these patients

[Hidden in reply to Devoid]

No. Its was said in year 1 of the research that the earlier started it was better. I am still a bit disappointed that its under half in remission 12months later. Especially as it is expensive.

[PMRpro Ambassador in reply to Hidden]

But there are half who don't respond 100% to it in the first place - GCA is a heterogenous disorder and there are at least 3 or 4 potential pathways creating the inflammation, possibly in parallel. Actemra only works on the IL-6 pathway.

[Hidden in reply to PMRpro]

Trying to work it out.... 🤔🤪

[lemarie1]

This is GREAT news! Thank you God.

[cmgarner]

Thank you all for your thoughts on this. I have GCA and PMR, currently on 55mg prednisone. I’ll be starting Actemra by the end of the year, after insurance approval is obtained. There are a couple of reasons why my rheumatologist wants to get my prednisone dose down as quickly and safely as possible.

I’ve read everything I can find about Actemra, the trials, risks and benefits. Also spoke with the rheumatologist about her experience with the patients she has on it.

Several things stood out to me in this paper. First, how long does one stay on Actemra? That was a question until this extension study was done. Patients who are in the roughly 50% who go into remission at one year, then have a roughly 50% chance of staying in remission for the next 2 years (length of follow up trial). That’s either a cup half full or a cup half empty, depending on how you look at it.

If the cup is half full, that’s a couple of years with no drugs: no Actemra and no prednisone. (And no PPI, maybe no glaucoma eye drops, etc. Maybe no more sardines, ha, ha!).

Another point that struck me was that in the case of a flare, those who started Actemra again, with or without a steroid, were again able to reach remission.

And lastly, “GCA requires ongoing management but does not require continuous treatment “. Yahoo!

This is still fairly new to me. So tired of being tired. I so appreciate learning from everyone’s experience.

[Spanky2019]

Much of your story sounds like mine. Dx with gca April 2019-80 mg pred off & on since then. On 40 prednisone now. Actemra starts in couple weeks if we can get price down. 2nd boniva tx next week. Let's "talk" * compare when we get further along. Best wishes. Happy Thanksgiving if you're from USA, unless you're native American then disregard. OMG, complicated world we live in. Lol

[cmgarner in reply to Spanky2019]

Happy Thanksgiving to you! With commercial insurance, and pre-approval, people are getting it for $5 a month. I’ll be Medicare in March, so it might be a sticker shock co-pay then.