Has Actemra been helpful for PMR?: I haven't posted... - PMRGCAuk

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Has Actemra been helpful for PMR?

lew49
lew49

I haven't posted for a while. I'm a 74 year old working psychologist in California. I was diagnosed with PMR one year ago.

I have had a flare of PMR when I got down to 7 mg reducing by 1 mg per month. I went back up to 10 mg, And then started down by .5 mg per month. I got a new rheumatologist who wanted me to go down faster. She Asked me to reduce by .5 mg every two weeks. Going down from 8.5 mg to 8 mg I started getting some symptoms. She had me go back to a 8.5mg for two more weeks.

But she said if I got stuck, she would like to try Actemra(tocilizumab). Does anyone on this forum have experience with this drug? Did it work? What were the side effects? If you live in the States, did Medicare pay for it (it can be very expensive here)?

34 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi.

In UK so can’t comment on prices - plus over here Actemra is only used for GCA not PMR.

My view is, Rheumy is pushing you unnecessary quickly - she obviously is of the old school that still believes PMR lasts only 2 years. Recent studies from your side is the pond states median timeline is recognised as 5.9 years.

Below 10mg a taper of 0.5mg is sensible - and more importantly - achievable! Her plan wasn’t - you have proof.

Why add in another powerful drug with more side effects unless absolutely essential, which on you case I don’t think it is - certainly not at this stage.

Others on it may have different advice- but at the end of the day it’s YOUR choice.

Good luck whatever you decide.

Primarose
Primarose in reply to DorsetLady

I totally agree with you DorsetLady, we know that the steroids work so why subject someone to an even worst drug when in effect it is still on trial. Plus, it can not replace the steroids either.

I took part in a survey a year or so ago at my hospital, from the numerous questions I was asked I thought that the survey was to help GCA sufferers to cope with their illness.

I later found out that it was in connection with using Tocilizumab.

So they were not bothered about how we cope with the illness, it was just to see if they can add yet another nasty drug into the equation.

I wouldn't have bothered taking part if I had known what the survey was for.

PMRpro
PMRproAmbassador

Use the search box and type in Actemra to get a list of earlier threads.

It isn't approved for PMR anywhere yet but it is being used in the USA off-label. If you have already reached 8mg after a year I would say that the use of tocilizumab/Actemra is OTT - it is a heavy-duty biologic with potentially serious adverse effects and actually no guarantee it will work any better. In the case of GCA it works for about half of patients and it doesn't necessarily get you OFF pred, just, maybe, to a lower dose. There have been PMR patients on the forum for whom it got them to about 8mg, no lower. That may be fair enough if you were stuck at a much higher dose, but if you are there anyway?

If it were me I would be looking for another rheumy with more realistic expectations of how long PMR lasts - a median duration of pred management of 5.9 years and of reaching a 5mg dose of 18 months:

practicalpainmanagement.com...

I'm sure she WOULD like to try Actemra - it isn't costing her anything nor has she the risks to face. But she wouldn't be using me as her experimental rat without a lot of information being forthcoming. I have had PMR for 14 years, been on pred for 9+ years and if I had proven GCA I think Actemra is available to me without further ado and can be asked for on an individual basis. We have discussed it - but there are other hoops to jump through in that I have had contact with latent TB (would need 8 months of antibiotic cover) and one adverse effect of tcz is arrythmia, I already have atrial fibrillation linked to the vasculitis. Would it make it worse or reduce the attacks if it reduces the vasculitis? There are indications that even Actemra only reduces the inflammation - the disease process continues in the background.

Nitrobunny
Nitrobunny in reply to PMRpro

AMEN

mpl615
mpl615 in reply to Nitrobunny

Hospital for special surgery has been running a study on the use of Actemera and it has been approved for the treatment of PMR I Am curious as to why you say it doesn’t treat the disease I would appreciate any information you have.

PMRpro
PMRproAmbassador in reply to mpl615

This thread is over a year old - which means things may have changed since then. I'm also assuming you are replying to my comments rather than Nitrobunny who you actually sent the reply to.

If it treated the disease the activity would go - but there have been relapses while patients are on Actemra as well as some on discontinuing it. It induces remission for about half of patients and they get off pred altogether though it isn't clear if that is a permanent state of affairs. About half continue to require pred though at a markedly lower dose. A few do not respond to Actemra - and it is known that other pathways besides the IL-6 pathway that Actemra targets may be involved in GCA.

mpl615
mpl615 in reply to PMRpro

Thanks it really seems you are the Pro regarding this

Hi, I returned to London a year ago after 23 yrs in the US so I think I may be of some help. Firstly, I have RA and PMR. I have just stopped Actemra after having been on it for 6 months. It was prescribed for RA following two previous drug failures. It did nothing for the RA or the PMR.

I will be starting a new drug in the the new year. Meanwhile I am stable on 10 mgs of Pred daily and 25mgs of Methotrexate weekly plus strong painkillers and ibuprofen as needed. While I have not been officially diagnosed with PMR there is no question I have it.

I have a friend in Atlanta who has been successful with Actemra for GCA and Medicare does pay for it.

PMRpro
PMRproAmbassador in reply to Laurapc

"It did nothing for the RA or the PMR."

Interesting - are they sure about the PMR? Or at least, as sure as they can be.

Laurapc
Laurapc in reply to PMRpro

I will find out the answers to my questions when I see the doctor in January. I will get the results of the recent blood work and the MRI. To be quite honest and I don't know how co-incidental this might be but I was worse when I was taking the Actemra but then I was only taking 5mgs of Pred. As soon as I went up to 10 there was an immediate improvement.

PMRpro
PMRproAmbassador in reply to Laurapc

Interestinger and interestinger ...

Laurapc
Laurapc in reply to PMRpro

Hmm, the past two years have been a bit of a nightmare. I'm just happy to be functioning on an ok level at the moment.

Tell your rheumy to chill. PMR can last 6 years, and Actemra isn't going to change that.

Besides the very hefty side effects is the hefty price tag. I don't know if California Medicare is going to pay for an off-label use unless you're in a clinical trial. Different states have different rules for what treatments are covered and at what rate.

8-8.5 is a pretty good taper after only a year.

Take a deep breath, sit tight for a while, and see how it goes when you taper on a DSNS plan.

PMRpro
PMRproAmbassador in reply to GOOD_GRIEF

I THINK that Genentech have a sponsor program for people without insurance that covers it - but don't quote me.

GOOD_GRIEF
GOOD_GRIEF in reply to PMRpro

They're also deep into a lawsuit for not disclosing side effects posing risk of heart attack, heart failure, stroke, pancreatitis, lung disease, gastrointestinal perforation and death in patients when taking Actemra for rheumatoid arthritis (RA) or giant cell arteritis (GCA).

Proceed with caution.

Oh my goodness

PMRpro
PMRproAmbassador in reply to GOOD_GRIEF

There is that - but it isn't that it is any WORSE than other biologics, just they happened to forget to mention it wasn't any BETTER either! So that is misleading and rather naughty...

Nitrobunny
Nitrobunny in reply to PMRpro

That it correct. It actually works with and without insurance and brought my co pay down to $20. It was $4500 per monthly infusion. It doesn’t work with Medicare.

PMRpro
PMRproAmbassador in reply to Nitrobunny

Nor outside the USA.

Lew49,

I am on Tocilizumab/Actemra for GCA/PMR. Actemra is only approved for GCA and not PMR (yet). I am on an injection every two weeks and have been for about two years. I was stuck on 23/25mg of Prednisone and could not get down without a major Flare. The Actemra allowed me to drop to 5mg within a year (I use the slow method). I did not have any side effects as of today. I am in the US and it is covered by my insurance after the deductible is paid, and yes it is not cheap! I hope this helps.

mpl615
mpl615 in reply to enan-illuc

My wife has been on it for approximately two years also one a week injections. Have you suffered sores in your mouth? From what I’m reading the general consensus is pred. Is the better drug . Are you pain free? Any other side effects?

enan-illuc
enan-illuc in reply to mpl615

I do not have sores in my mouth and I am for the most part pain free. At 72 there is always a little pain/stiffness but I can say not much. I give myself the shot once every two weeks. I was told that the Actemra is an addition to the Prednisone and that I will be on a very low dose of Prednisone "for the rest of my life", I have had two Rhuemys tell me this and I do not have a problem with it. I hope this helps.

I was diagnosed with PMR and GCA. After being on 30 mg of prednisone for over a year and unable to wean off the medicine, my doctor put me on the Actemra shots. I give myself a weekly shot in the pinched fat of the stomach. Very, very thin needle that you can barely feel. For me it was great. I was able to slowly wean down from 30mg to 3mg of Prednisone. I have been on it for about a year. My symptoms are the same as on Prednisone, but it has allowed me to take a much lower doses of Prednisone. Everyone is different, but for me it has been great. Some people even feel better. No side effects for me, but be sure to get all your immunizations: flu, pneumonia vaccine, and Zoster vaccine. Do not be around people that are sick and hand sanitizer is your new best friend. Your immune system is so suppressed that you need to be smart. If I get a cold, fever, or infection, I skip the next dose of Actemra until all infection is gone. I am located in California, too. I do not know about Medicare as I was diagnosed at 56 and still covered by my medical plan until I reach 65. They watch you very carefully... pharmacists and doctors monitoring your symptoms. It is worth trying. I hope it is amazing for you.

Daisychain12
Daisychain12 in reply to Dream21

So happy for you darling xxx

PMRpro
PMRproAmbassador in reply to Dream21

"After being on 30 mg of prednisone for over a year and unable to wean off the medicine,"

But no-one would be off pred in a year...

Dream21
Dream21 in reply to PMRpro

It is approved for GCA. I do not know the recommendations for PMR. :)

What is Actemra please?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Daisychain12

This is “official” site - so may not be entirely unbiased!

actemra.com

Thank you xxx.

Hi Lew49,

My wife is on Actemra, but for GCA. We are in the US and after she spends $5000 for drugs in a year the cost goes down to about $800/3 months. That is Medicare, part D. As far as helping PMR - Not one bit! My wife is at 5 mgs and she would not have made it that far without Actemra. It has allowed her to taper at a rate of 1mg/month from 10mgs. She started using Actemra at 20mgs and initially to 10mgs, she could drop 2.5mgs per month. As Pmrpro says, Actemra keeps inflammation down. My wife's CRP reading stays at 0.3 now.

Hope this Helps,

Jim & CJ

Hello,

I have been on mthly infusions of Actemra since June of this year. I have had PMR for 3-1/2 years and was diagnosed with RA in May of this year. (My PMR definitely the bigger problem) I had been stuck at 20 mg Prednisone for almost 2 years unable to reduce withour a PMR flare so was willing to try Actemra. There was a person on the Patient info forum that had much of the same issues as myself who went on Actemra and weaned off the Prednisone in about a year. I had tried Plaquenil, Methotrexate before this. I have not had the same results with the Actemra as she did. I reduced to 16 with no trouble but then tried to go to 14 too quickly and had a flare so now am at 17 it may be helping me to reduce where I couldn't at all before even using the DSNS method. My RA Dr wants me to stay with it a few more months. I don't like using all these powerful drugs and if I was at 10 mg or less of Pred I would not have even tried them. She has never had a patient that couldn't reduce the Pred and she is good about letting me take what is needed. I am thinking my absorption level of the Pred may be on the lower side so me taking 20 may be like someone else taking 15 or possibly less. Still I have lots of side effects from the Pred and would like to get my dosage reduced.

I am in the US. Actemra is not approved for PMR here but with the RA diagnosis coming alongside it was approved by Medicare. They pay 80% of the allowable for infusions. Weekly injections may be different.

Honestly I would not do the Actemra if I was at your level of Prednisone. Even tho I have no side effects i would choose not to add another drug with potential side effects. I would be delighted to be at 8 mg dosage! Of course it seems your Dr is pushing you toward that but it's your body, your decision! It is so nice to have the experience of everyone on the forums to help make these decisions.

Dream21
Dream21 in reply to MKCOregon

I agree. That is why I chose it.

I have made several posts about Actemra before but in short, despite having to stop because of a serious reaction to the last infusion, it allowed me to taper down very quickly. I continued the taper very slowly and I’m at 6 at present. I was on a very high dose due to GCA when I started.

And 8 really is a decent dose, so close to what my rheumatologist likes to call a “safe dose” only meaning 5 is about what our bodies make. Personally I wouldn’t risk it at 8 but I was incredibly grateful when I was north of 40 and started it.

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