Actemera: Just been reading different reports on... - PMRGCAuk

PMRGCAuk

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Actemera

Xanthe12345 profile image

Just been reading different reports on here! Just a thought! It does seem that those of you on Actemera dont seem to have problems with your adrenals kicking in and reducing preds quicker.

Is that so or have I misread the posts?

How lovely if that were right!🤞

19 Replies
PMRpro profile image
PMRproAmbassador

It is more likely to be due to the fact that most people put onto Actemra will not have been on pred for very long and will then achieve a realtively low dose quickly, The shorter the time you have been on corticosteroids the fewer problems you are likely to have in terms of adrenal problems. I do know of people who have been on pred a bit longer before starting Actemra who have had to slow down below about 7mg too.

Xanthe12345 profile image
Xanthe12345 in reply to PMRpro

Thanks... I think I might be clutching at straws 😁

Longtimer profile image
Longtimer in reply to PMRpro

A silly question this I'm sure, and you have probably answered it many times!.......If Actemra and possibly MTX lowers pre d quickly for some patients....what is it doing that pred isn't?... .....does it clear the inflammation?

Thank you

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Don't really know what Actemra does - I think it has an effect somewhere in the pathway that creates IL-6, one of the inflammatory substances. The result is far less inflammation, sometimes none. However - there is some evidence that just because it removes the inflammation doesn;t mean it stops the disease process.

The methotrexate may change the way the body processes pred so it works better. But it doesn't work for everybody - so maybe it doesn't do that for everyone, Some doctors say it is the suppression of the immune system that has the effect by reducing the activity of the disease process. They don't really know.

Personally I think there may be a form of PMR that is more like RA - and then mtx DOES work.

Longtimer profile image
Longtimer in reply to PMRpro

Thank you for that......I have been asked in the past why I haven't tried those that gets us off pred quicker.....it has never been offered, but because I react to even 1paracetamol.....well, though have to say I do feel quite desperate.......I

I agree about PMR being like RA, my sister with RA often says this to me......symptoms alike....she did try MTX....but didn't suit her.......

Thanks again.......

PMRpro profile image
PMRproAmbassador in reply to Longtimer

The simple answer to that question is that there was NOTHING that is guaranteed to get us off pred quicker - only to possibly lower the amount of pred we need and even that isn't sure. The only thing that is likely to get you off pred quicker is Actemra - but it is not approved for PMR in the UK. Ask them if they have a spare £12,000 a year (or possibly more) to give you...

Longtimer profile image
Longtimer in reply to PMRpro

Yes, quite........

PMR2011 profile image
PMR2011 in reply to PMRpro

Interesting you say that, I have both PMR (2011) and GCA (2017). Started Actemra about 8 months after GCA and have been on it for 7 months. Not only has it managed the GCA I have no symptoms of PMR any more! Pre GCA I was hanging around 4-7 mg with intermittent symptoms.

They think GCA causes you to produce more Interleukin 6 than needed which then “attacks” your own body. Actemra prevents interleukin binding so the “extra” then increases in your bloodstream. Normal level is less than 5. Mine is 22 since Actemra. Luckily no side effects at this point. Monitor liver enzymes and cholesterol as it can affect liver. It has the potential for bad infections just like Pred.

Then there is the cost issue. Private insurance pays in the US and the company supports the remainder. Out of pocket cost for me is 5$ per month.

PMRpro profile image
PMRproAmbassador in reply to PMR2011

But the company assistance doesn't apply in Europe - if the health care system doesn't support its use, that is it, your only option is paying yourself. It has been mentioned for me - but here in Italy they will have to apply for individual approval. I also have a history of a VERY positive TB skin test so would also have to take on board 8 months of antibiotic for TB "just in case". I have atrial fibrillation - and Actemra can interact with the medications for that as well as the anticoagulants. Not a simple choice.

Sho-Sho profile image
Sho-Sho in reply to PMRpro

That is very interesting - I have been stuck on 8mg now for 10 weeks, feeling very dizzy etc and wondered whether to ask my Rheumatologist whether I might qualify for going on to Actemra to help me get down. But having been on high steroids with GCA for two years it would seem that it's not going to help.

PMRpro profile image
PMRproAmbassador in reply to Sho-Sho

If you are down to 8mg after 2 years then I'd say Actemra was a bit OTT. This is a physiological dose of pred now - about the amount of corticosteroid your body makes anyway so isn't doing damage and Actemra isn't sweeties either. It has potentially very serious side effects.

Sho-Sho profile image
Sho-Sho in reply to PMRpro

Thank you for your comments. Sorry to be a nuisance but when you have a moment what can be the side effects of Actemra?

PMRpro profile image
PMRproAmbassador in reply to Sho-Sho

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

for a start - since they say "This is not a complete list of side effects and others may occur.". I'm sure if you google you will findother lists.

Some patients complain of fatigue and as an immunosuppressant it does potentially increase the risk of infections and their severity. There is no drug without potential side effects - if a substance is powerful enough to have a desired effect then it can also have undesirable ones. Whether you will have some, any, is impossible to say - the only way is to try. But as I say, while using it early at high doses of pred does seem worth it - using it at low doses in the later stages of GCA is another thing. Not to mention the cost.

Sho-Sho profile image
Sho-Sho in reply to PMRpro

Thank you.

Hi,

I want to give my experience with Actemra.

Last year after 8 month on 60 mg Prednison and Methotrexate for GCA my doctor told me to taper completely 10 mg per week because it didn’t do anything for me. I did. I suffered extreme fatigue for several month. TB, Pneumonia tests and others and injections followed. On December 21 I injected my first Actemra and the next day I felt already so, so much better. My CRP at the time was 80. Actemra can be a miracle drug. I was without symptoms. The following months my CRP was around 1. I had to stop Actemra for an upcoming surgery in June and the healing process was not straight forward. i had nausea, no appetite and was extremly fatigued. I remembered my GCA starting with 8 days of nausea and went for a blood test. CRP was 97, CGA had flared and I injected Actemra. Took a bit longer, 3 days, but I feel good again. We have to pay CAN$710 for one dosage here in Canada. We had a little struggle with the health care system, but they cover now part of the costs of CAN$1566 for two month, or four syringes. I get injection side effects now, itchy swollen skin around the injection side, but thats it. I’m very grateful this drug is around and can only encourage you to try it, if it is a choice for you. All the best, Monika

Xanthe12345 profile image
Xanthe12345 in reply to Akino

Thanks so much Monica....as yet it is only available for certain diseases. Gca but not polymalgia as far as I know. Thanks so much for telling me your story. Hope you continue to feel better.

That has not been true for me. I could not get below 30mg. or else my esr would jump to 65. Now I am on Actemra. I take a shot weekly and take 2mg Prednisone. All my inflammatory markers are very low. It has been a lifesaver for me. Especially someone who had tons of side effects from prednisone and could not get below 30mg after 1year. I have GCA and PMR.

Dream21 profile image
Dream21 in reply to Dream21

Also, I still suffered getting off the last 10 mg. Then I went back in 2mg. It is hard, but remember people do it successfully.

After 2 years of PMR and flares every time pred reduction was started, my rheumatologist prescribed Actemra and I’ve been on it for a year. I inject it once a week - have had no side effects from it at all and I’m down to 2 mg pred daily. Hope to be totally off pred soon. I was able to get completely off methotrexate several months ago. I’m not sure when I’ll wean off the Actemra, but I feel better than I have in three years. It has worked well for me.

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