Any Actemra experience?: Hi all, thanks for the... - PMRGCAuk

PMRGCAuk

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Any Actemra experience?

PMR2011 profile image

Hi all, thanks for the info, support and chuckles on this forum. It has been invaluable! I am 58 years young and had PMR for 6 years, going along nicely on 4-5 mg when got diagnosed in May with GCA. Over 5 months tapered to 20mg and am now in the middle of another flare (a doozy!). Saw rheumie Friday who wants to try Actemra (good news is insurance will cover it). It's rather scary as Prednisone is a known entity. Does anyone have firsthand experience with Actemra? Thanks.

30 Replies

Yes I have been on actemra infusions for 17 months. I have no side affects. .....I feel no different before or after infusion. I have basically loss of strength and some lightheadedness for symptoms. Dr says I'd have a lot more symptoms if I wasn't receiving the infusions. Compared to how I use to feel I am very thankful for how I am getting along now.

PMR2011 profile image
PMR2011 in reply to Buddyk

Thanks Buddyk. Maybe not so scary after all? Are you still on prednisone and how do they know when to taper the Actemra?

Darcy2000 profile image
Darcy2000 in reply to PMR2011

Yes that is also my question... are you off the Prednisone... would like to get off it if possible .I am one of those weird people who has never had any serious pain with PMR only stiffness quite manageable and GCA just mild Jaw claudication.just biopsy confirmed it .Be happy to be on a drug that hopefully will work and not one that damages bones ...last scan showed significant determination in bone density

Darcy2000 profile image
Darcy2000 in reply to Darcy2000

Oops just noticed this is an old post so don’t expect an answer

PMRpro profile image
PMRproAmbassador in reply to Darcy2000

PMR2011 is still active

PMR2011 profile image
PMR2011 in reply to Darcy2000

Hi Darcy2000, I am off the Prednisone. Have been on Actemra for 2 1/2 years and off Pred for 1 1/2. Have been tapering the actemra and am now on every other week injections (was on every 10 days for 6 months). Feel good. Good energy. No symptoms except fatigue 1-2 days before Actemra due. Luckily for me no side effects other than slightly elevated cholesterol.

Klah profile image
Klah in reply to Buddyk

Are you off of the prednisone?

Thanks.

Hi as a Brit. We don't get the option of Actemra yet and I really hope it works well for you. There are a couple of people on here with experience of this drug. I hope they spot your post!

I just wanted to wish you well and commiserate you've had some bad breaks. I hope this will be the turning point!

Your support is much appreciated SheffieldJane! I am a glass is half full kinda gal but this disease can be really discouraging at times! This forum helps for sure!

MaryA_ profile image
MaryA_ in reply to PMR2011

That’s for sure!

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

It is being used for GCA patients - probably on an individual funding basis. Dasgupta has a few patients on it I think.

SheffieldJane profile image
SheffieldJane in reply to PMRpro

That does ring a bell come to think of it. He's a bit of a star in the field isn't he?

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Held to be yes - without him there probably wouldn't be half as much known about GCA in the UK.

I am 70 years old & have had 6 infusions of Actemra...was at 8m in June, now down to 4 (should be 3, but I flaired). I had to quit my hormone replacement because of breast

Swelling, letdown reflex. Right now I have a urinary tract infection...but already better I think with the 6 pills. Otherwise I have not had the pain, except if I overdid it for a day...but then I would immediately recover. I think right now 4m is my number...will slow down the taper. I feel that the lower dose of prednisone feels good. If I get to 1m...then zero I would continue the Actemra for about a year I think....see how it goes...see if the inflammation is still around. Some people have really bad reactions to the pred, others do not. I did not, but don’t know about unseen risks from the pred. No easy answer!

I do feel better with the Actemra...or is it less prednisone?...mmm

Don’t Google Actemra, all bad😊 I was really stuck at 8m...could not reduce any further...almost 4 years into the PMR. My rheumy said if It doesn’t work...getting rid of the inflammation..then back to prednisone.

PMRpro profile image
PMRproAmbassador

Look at the top of the side bar on the right of this page - you will see several links to threads about Actemra/tocilizumab.

Hi PMR201,

Take a look at my posts. I am an Actemra fan.

PMR2011 profile image
PMR2011 in reply to Marie1479

Thanks Marie,

I read thru your posts, it has been very helpful!

I am in the U.S. Do you have to have had bad side effects with pred for insurance to cover the infusions? I just have the typical stuff.

PMRpro profile image
PMRproAmbassador in reply to bunnymom

I understand from others it depends on your rheumy and your insurance - so it isn't really a question anyone else can answer. Some rheumies won't use it, some insurances are sticky, others are not.

Hi PMR2011,

I am on Actemra for about three months now and I think it helps. I have the subcutaneous injections (I have to give them myself) twice a month and so far no adverse reactions. I have GCA/PMR and just went up to 20mg from 13.5 of Prednisone due to a Flare. This Flare was not bad but my blood numbers were up and I do not take chances. I hope this helps.

Enan

PMR2011 profile image
PMR2011 in reply to enan-illuc

Hi Enan,

Thanks much, it does help. Package inserts seem to only describe the bad things that can happen. It really helps to also hear the good is can do. Is this your first flare and have you been able to taper since being on Actemra?

enan-illuc profile image
enan-illuc in reply to PMR2011

Hi PMR2011,

Yes this is the first Flare since I was on Actemra. I had tapered to 13.5 mg of Prednisone (started out at 60mg) and had blood tests done. I felt okay but the tests were off so the Doctor said to go up to 20mg and I did. I think the Flare would have been worse without the Actemra but I am not sure. I will begin tapering again in two weeks. Having PMR/GCA is like holding a wolf by the ears, if you let go it bites you! I would not taper the Prednisone too fast.

Enan

I started Actemra last May. For the first four months I felt like I was in remission(PMR). My CPR had gone down to normal for the first time in years. But after that, everything went down hill. I started having what I first thought was adrenal insufficiency but since I had felt fine on 6 mgs of Prednisone, I thought maybe it was a flare but the symptoms didn't respond even when I went back to 15 mgs. I had no side effects, though, and I'm thinking I was just unlucky and came down with another disease that isn't responsive to prednisone or Actemra

I would try it again, not so for methotrexate, though.. that gave me a lot of horrible side effects.

PMR2011 profile image
PMR2011 in reply to Gaijin

How fast did you taper Pred and are you still on Actemra? What were your symptoms?

Gaijin profile image
Gaijin in reply to PMR2011

I was told to taper the pred 2.5 mgs every 2 months so I did it by a revised version of the DSNS taper to try and stick to doctor's orders. I had absolutely no symptoms for over 3 months while on Actemra. My initial symptoms were pain in the shoulders and hip girdle, muscle fatigability and malaise. My symptoms now are different and although I tried going back up to 15mgs for a week without success, I still feel that I either went into remission and developed some other condition that isn't sensitive to 15mgs and needs a higher dose, or that what I'm feeling now is indeed a PMR flare and it isn't being treated correctly by my rheumi who told me to taper to zero without regard for my symptoms. You are lucky to have a knowledgeable and understanding physician, plus good insurance that covers Actemra. I really did experience a complete remission of symptoms, I was able to do all activities I did prior to dx of PMR and I had absolutely no fatigue... It was Shor lived, though.

PMR2011 profile image
PMR2011 in reply to Gaijin

Gaijin are you still on Actemra?

Hi PMR2011,

I am Enan, I answered the posting a year ago so I will update what has occurred. I was at 13.5 when I posted (started at 60mg) and I am now at 5mg of Prednisone and I am still on Actemra. I was at 4mg but my Rheumy, who is excellent, said it would be safer to go through the Winter at 5mg and be safe. I fully agree with her. I think the Actemra helps and I will very slowly drop my Prednisone in March. I hope this helps my fellow Actemra users.

Enan

PMR2011 profile image
PMR2011 in reply to enan-illuc

Thanks enan-illuc. I am always curious as to how others are getting along on Actemra. I was replying to a new posting from Gaijin to see what the symptoms were.

So glad you are doing well. Congrats on lowering the Pred. Hold on to the Rheumie! Cheers

I’ve been on Actemra for about 18 months. Started with monthly infusions, then did injections myself every two weeks. Helped, but symptoms returned before next injection due. Dr. Increased to weekly injections, and it’s been great. Down to .5 pred daily - plan to try stopping it completely next week. Been off methotrexate for a year. No side effects whatever and I feel really well. Dr sees me every 12 weeks, checks labs, and is happy with results. Before Actemra, no matter how slow the pred reduction, symptoms always returned. I’m in US and insurance covers it. Only have a $5 a month co-pay.

Thanks all for the valuable information re your experience with Actemra

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