Actemra: Does anyone have any experience with... - PMRGCAuk

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Actemra

Cgt1151 profile image

Does anyone have any experience with actemra for treating pmr and gca? I was diagnosed with pmr in February of this year. Rheumatologist started me on 40 mg of prednisone. By the end of May I had tapered the prednisone to 12.5 mg and became very sick. After having bilateral temporal artery biopsies, I was diagnosed with GCA in the left artery. Doctor increased prednisone to 60 mg. It has been 6 months since I was diagnosed with GCA. I was tapering by 2.5 mg every 2 weeks. When I reduced my dosage to 12.5 this week, I began to feel joint pain in both shoulders, both hips and both legs. Doctor said to go back up to 15 mg and he is planning on starting Actemra infusion after my next visit on 12/21 when I will take a TB test in anticipation of the infusion. Just curious if anyone has any experience with this medication. I am a little concerned about it after researching it online. Thanks for any responses.

40 Replies

Hmm, well, this is only my opinion but to assume Pred isn’t working is a tad premature. Your reductions have been pretty nifty and these schedules aren’t always slow enough for everybody. At six months I was on 17mg having started at 60mg briefly, then staying on 40mg for 6 weeks, during which I felt the GCA being got hold of. How long were you held at the high doses? It is possible that you were having more extreme withdrawal due to lower dose, especially if your aches came within a day or two. On high doses, PMR is knocked out of the park, but when you get lower it can sometimes be hard to distinguish between withdrawal and flare warnings. If it were me, I’d ask for 15mg until things settle and then something like 1mg per 2 weeks or even a month. The trouble with 2.5mg every 2 weeks is that the lower you go the closer you are getting to the minimum dose for you and withdrawal can be harsher. Going from 15mg to 12.5 you have no idea if you needed to go back up to just 13mg instead of 15mg.

I don’t have anything against Actemra as it is an absolute life saver for some, I just can’t see the point of adding a powerful immunosuppressant when the sun hasn’t totally set on the current plan.

Cgt1151 profile image
Cgt1151 in reply to SnazzyD

When I started feeling bad in May I was placed on 40 mg of prednisone for 4 weeks then started tapering by 2.5 mg every 2 weeks. Did very well except for one flare up at 17.5 mg...went back to 20 mg for 2 weeks then back to tapering by 2.5 till this week when I went to 12.5. I don't really want to start the actemra and agree that maybe I should just slow the taper down. Just wondering if anyone had been on the actemra and if there were any significant side effects. I have already lost a lot of my hair from the prednisone but because I felt so much better I figured it was worth it. Face looks like a balloon and have put on a few pounds..which I did not need! I think I will ask my rheumatologist to slow the taper before trying the actemra. Thanks for your reply

PMRpro profile image
PMRproAmbassador in reply to Cgt1151

If you look at the Related Posts there are loads about Actemra to browse through.

I just want to say I agree with everything Snazzy has said and that if it were me, before agreeing to Actemra infusions (which as far as I know aren't approved for GCA as they weren't used in the clinical trials, just the injections), I would want to return to 15mg and then taper the dose in a far more suitable manner for PMR. Top experts say a reduction step should not be more than 10% of the current dose - and at this stage 1mg at a time is fair enough if they insist on reductions every 2 weeks .

SnazzyD profile image
SnazzyD in reply to Cgt1151

Hair falling out is a common response to acute systemic disease. Mine fell out once after 5 months and again when my body was stressed with low adrenal function at the bottom end of the dose ladder. Yes, Pred can cause thinning but it isn’t always to blame. Weight is easily controlled with a super low carb diet and many of us use it for weight control and actually find it affects their inflammation levels. When having Pred, just eating healthily usually isn’t enough to stop spikes in blood sugar. We vary in how much carbohydrate we can have. I had to give up all potato, rice, pasta, flours, maize and of course sugar. Now I can eat what I like, I don’t usually bother with them now, it feels so normal.

The moon face will go down as the dose reduces. All it is, is what fat you have concentrating itself round the face, neck and middle. I started at 8.5stones, didn’t put on any weight but still got a moon face but it started to go under 10mg. Some on this forum have reversed their diabetic status from Pred like this and lost weight. It is very doable.

Another thing is cut down salt to avoid the fluid retention that can also settle round the face. Again, I had to avoid even sauces for a while.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Actemra is only licensed GCA patients in the UK - not PMR.

Agree with SnazzyD, Rheumy bit quick off the mark....but as I guess you’re in USA it has to paid by your medical insure - maybe that’s a factor.

A number of us are on this drug. In the U.K. it’s brand name is Tocilizumab. It is only prescribed for GCA and is self administered by subcutaneous injection. I have been on it for a few months. My Rheumatologist made a case for me to have it because I was experiencing significant side effects from 4 years of Pred for PMR then I developed GCA and Large Vessel Vasculitis. I am grateful not to have had to go on to the very high dose of Pred after getting down to 3 mgs previously. The Actemra, drug side effects do make for scary reading on the internet. So far I have been ok with no significant GCA symptoms. The side effects I have experienced are small persistent infections, eye and nasal. I feel generally tired and unwell. My Rheumatologist thinks that it is more likely to be the GCA making me feel low, not the Tocilizumab. Not much help I know but my doctor thinks it is preferable, and it affords me a degree of protection. I am still struggling to get below 10 mgs of Pred. I agree with the advice you have been given by SnazzyD and others.

in reply to SheffieldJane

Tocilizumab is a generic name ... brand name Actemra or RoActemra in the UK I think.

SheffieldJane profile image
SheffieldJane in reply to

I was lazily waiting for PMRPro to correct me, if I had got it the wrong way round. Thanks DadCue. My Rheumatologist refers to it as Tocilizumab and my drug boxes say Ro-Actemra. Actemra seems more internationally understood - I thought.

in reply to SheffieldJane

I wish you could get past the 10 mg barrier. Your injection is today (Friday) so mine is sometime this weekend.

Actemra is easier to spell. I usually cut and paste Tocilizumab!!! I still avoid saying Tocilizumab. Anyway, except for my rheumatologist, nobody seems to know what it is.

youtube.com/watch?v=JjeALdn...

SheffieldJane profile image
SheffieldJane in reply to

That’s useful. I was emphasising the wrong syllables. I get pain at the back of my head and in my temples below 10 mgs. But I am relatively recently diagnosed. I think fear for my eyesight stops me, the pain isn’t a severe as some people describe. My Rheumatologist is leaving it up to me.

Frewen1 profile image
Frewen1 in reply to

Great. Or, TCZ? Cheating...

Rimmy profile image
Rimmy in reply to SheffieldJane

Hi SJ - after having TCZ refused to me in OZ - I don't fit the 'criteria' here - altho have had PMR/GCA persistently for almost 4 yrs (as I have mentioned here recently) I am somewhat surprised that after so many doses you are still not able to lower your Pred dose as yet any further. Is this what your specialist 'expected' - ? I am curious what kinds of impact and how 'fast' it is meant to enable steroid 'sparing'. I have also read TCZ appears to work well on certain people if it deals with a particular 'pathway' affecting the inflammation - whereas not with others who may have GCA but with different 'causes'. Is there any way of knowing which 'group' you may be in ? There is clearly quite some variation in the experiences of those of us even here who discuss their experiences of PMR and or GCA - the duration and intensity ('flares' etc) despite the medications dosage and types we are taking. I am convinced my 'recalcitrant' form of GCA is probably like that my own mother experienced over a decade or so between her late 50s and late 60s (mine started later) but she was never appropriately treated (no Pred ever) and lost most eyesight and had many 'minor' strokes before - from what I recall now - it seemed to 'burn out'. Not sure how much we can rely on genetic examples in any rellies to 'tell us' what 'type' or 'durations' we can expect - but I am guessing some are certainly much more persistent than others whatever we may do/try. But I am very sorry you have had such a long 'battle' Jane - I can really relate - although I am fortunate to not (currently) have much else going on - except a bit of weight gain (again) from having last round of having to up my Pred dose for several months - and NOW Xmas is coming and NO WAY will I treat that as a 'low carb' event - although I will try to 'behave' in the new year (LOL !!!) Sending LOVE - take care XXX

PMRpro profile image
PMRproAmbassador in reply to Rimmy

" Is there any way of knowing which 'group' you may be in ?"The ability of otherwise of being able to get to zero pred...

Rimmy profile image
Rimmy in reply to PMRpro

Thinking 'rhetorically' about which of us might benefit most from TCZ - but also obviously reducing our Pred - maybe 'zero' is a goal which cannot be met by everyone - I'd (one day) prefer no medicines of any kind but THAT likely won't ever happen

PMRpro profile image
PMRproAmbassador in reply to Rimmy

The point with the TCZ is that it deals with only one of 3 different mechanisms creating inflammation. But I do think that accepting where you get to rather than beating yourself for not getting lower is a good start!!

Rimmy profile image
Rimmy in reply to PMRpro

Yes however taking any additional drugs with the potential for 'extra' side effects is certainly disappointing if it doesn't do what you are hoping it might. In the end of course everything is a 'risk' and we have to just hope for the best possible result.

PMRpro profile image
PMRproAmbassador in reply to Rimmy

Which is why I'm fairly happy on my high dose of pred alone - I know what it does. Add something else and only be able to reduce a bit seems a bit pointless ...

in reply to Rimmy

My rheumatologist said when I started TCZ, that he would be happy if I got down to 3 mg of prednisone. My expectation when I started TCZ was that it wouldn't work. To be honest, I was more interested in a TNF inhibitor. My rheumatologist said that would be another option but he wanted me to try TCZ first.

Ultimately, I did try a TNF inhibitor and it didn't work.

My biggest problem when I got under 10 mg of prednisone was that the pain would return. I was never sure what was causing the pain but assumed it was PMR. It was somewhat like a multiple choice question that I asked myself.

Was the pain caused by?

A) PMR

B) prednisone withdrawal

C) adrenal insufficiency

Nobody told me that the answer could be D) All of the above.

TCZ seemed to eliminate A) PMR ---it was only then that I was able to taper to zero.

Rimmy profile image
Rimmy in reply to

Pleased it worked for you - but I am wondering here mostly about GCA. Interesting in OZ we can't get TCZ even for long term GCA while you have been able to have it for PMR.

in reply to Rimmy

PMR and inflammatory arthritis ... it went through a medical review panel and TCZ was approved for me. I think taking relatively high doses of prednisone daily for 12 years with many complications from long term prednisone use made the decision easier. Not to mention failing multiple DMARD's. There was no end in sight for ever getting off prednisone.

My rheumatologist also brought up my age at the time and said at 64, I was too young to take prednisone for the rest of my life. My rheumatologist didn't make any promises and simply said TCZ would be worth a try.

SheffieldJane profile image
SheffieldJane in reply to Rimmy

I know getting stuck at 10 mgs Pred is not what it said on the packet is it? Also feeling like death most days. My Rheumatologist is a real optimist and every time I speak to her, I feel determined to carry on. I trust her, she’s kind, compassionate, caring and very clever. So I have put it in her hands. I was cheered by Prof Dasgupta ‘s miracle in restoring someone’s sight with a Tocilizumab infusion. I took it as a sign. What option do I have? Pred doesn’t love me anymore.Interesting about your mum’s disease burning out without treatment. My mum’s Thyroid Disease ( Graves, like me) burned out. She refused the thyroid gland removal operation, saying no one is going to cut my throat. To all intents and purposes she got well again. Leaving well alone is not an option these days.

I have just had my 4 th shielding letter from the government. They are really good at mending the gate, painting it and shutting it after the horse has bolted. 😂

I remember how worried you were about tourist bringing their germs to your pristine beaches. It was alright though. Australia has done well!

Rimmy profile image
Rimmy in reply to SheffieldJane

You're 'right' there Jane - if we did even suggest 'leaving [stuff] alone' people might assume some 'nuttiness' - but it is kind of tempting sometimes .... XX🌻🌻

I'm taking Actemra for PMR but not GCA. I also have been diagnosed with inflammatory arthritis. Actemra works extremely well for me. Before PMR was diagnosed, I took high doses of prednisone for uveitis but I could easily taper off prednisone in 1-2 months.

For some reason, when PMR was diagnosed, I needed 40 mg to get pain relief. It took 12 years to taper the prednisone down to where I could maintain a 10 mg dose. I never could go much lower than 10 mg. When I started Actemra injections (not the infusions) I tapered from 10 mg to zero in about 6 months.

So far, no side effects that I am aware of and I have been taking the injections for almost 2 years.

SheffieldJane profile image
SheffieldJane in reply to

I am heartened by how the drug has worked for you. I remember when you first joined the forum. You seem so much better now. I just think my GCA/LVV hasn’t quite settled down yet. It may have been lurking for some time. Your fatigue lifted too. I can hardly imagine that. With me it’s a way of life.

in reply to SheffieldJane

I still have some problems. Mostly from arthritis ... I think (know).

Uveitis could also happen again. I was encouraged that the latest flare of uveitis was not an autoimmune flare. I kept asking the cornea specialist and he eventually classified it as a "traumatic iritis".

They started 40 mg of prednisone but the cornea specialist said it probably wasn't necessary. It was nice that I went from 40 mg back to zero in two months. The fatigue came back for awhile so I think 40 mg of prednisone wasn't helping my adrenals.

SheffieldJane profile image
SheffieldJane in reply to

My fatigue never altered. I was briefly on 40mgs. It is hard to unpick what’s happening.

in reply to SheffieldJane

I think prednisone perpetuated PMR because I couldn't tell what was causing the pain at lower doses. I'm convinced my deathly fatigue was adrenal insufficiency.

Now, if I can figure out what causes the shortness of breath. That is getting better too so I think much of it was deconditioning. The extra weight I gained didn't help. The extensive, multiple and bilateral pulmonary embolism five years ago wasn't a good thing either.

SheffieldJane profile image
SheffieldJane in reply to

Did you ever get that awful oxygen starvation? You can take a deep breath but there just doesn’t seem enough air? I asked one of the GPs who said “ what’s that”? then put a clip on my finger to measure my oxygen levels, and said you’re fine. But it kind of comes in attacks.

This is a mixed response to shortness of breath and Actemra/TCZ.

I get that oxygen starvation as well. My doctor ordered a chest x-ray. I have some scarring in pleura from many many years ago, but no obvious disease. I know how to breathe properly, but I feel that when I take a deep breath that there is a corset keeping my rib cage from expanding adequately. So it feels like I cannot get enough oxygen. I am tired a great deal of the time. Dr has ordered an echocardiogram. My PO2 is 98 in office. Dr also ordered a sleep study to see if apnea might help explain fatigue.

My GCA symptoms started in January 2020 and I started treatment in February on 40 mg prednisone. I am in the US and my rheumatologist suggested TCZ early on to help speed the prednisone taper. I get infusions every month in his office- started after lockdown lifted here-in May.. I was at 25 mg pred at that time. He changes pred. dose each month, based on how I am feeling on pred and TCZ. He orders labs about every 3 months, with the most attention to the metabolic panel. This month I am on 2 weeks at 7 mg and 2 weeks on 6. I actually feel a bit better the first 2 days after the infusion. I haven't had any flares for several months. Just feel like I am operating on half speed. When I did have flares, I wasn't engaged enough with this wonderful group to even consider going back up during a flare. I just stuck it out, thinking I would eventually have to get back to that dose. I sense from some of the posts here that it can get harder on lower doses.

Even though I am better by far than when I started, I still get discouraged at how low my energy is. I am having quite a lot of mid and lower back pain, which is probably due to scoliosis and degenerative spine, and osteoporosis. (I didn't have scoliosis when I was younger: it seems to have started with osteoporosis) Suspect the GCA is also contributing to muscle/myofascial pain, and I am taking physical therapy. I take Prolia injections for osteoporosis. Hate taking it, but when I stopped a few years ago, I rapidly lost bone mass. As many have expressed here, it is hard to tell if the symptoms come from the disease or the medications. Don't we all wonder when we are going to feel GOOD again?

I also get discouraged that, although the early prednisone seems to have prevented blindness from GCA, I also got wet macular degeneration in that eye a few months earlier. It was treated successfully for several months and then the injections stopped working and I have end-stage macular degeneration in that eye. Nothing more can be done. If I cover my good eye and look at a person with the "bad" eye, I cannot make out their features. Fortunately, my other eye continues to really well to the injections for over 11 years.

Thank you for sharing your journey with. Plenty of food for thought and ideas there. I definitely wonder, with less confidence, when I will feel good again.

PMRpro profile image
PMRproAmbassador in reply to MsDirecto

One of the symptoms of GCA can be the same as the main symptoms of PMR - because GCA affecting the large vessels in the trunk can cause the same problems. Also associated with PMR is myofascial pain syndrome - which commonly affects the piriformis and other large back muscle groups. I, too, have a scoliosis, not due to osteoporosis but made more obvious by the tight back muscles involved in the MPS which pull at the spine and make it more squint. I keep it livable with with the help of the pain clinic and intermittent courses of physiotherapy which use therapeutic massage and other manual techniques to relax the muscles. It isn't perfect - but it is pretty good. However, ordinary physio may be questionable - too many repetitive exercises are poison in PMR-related muscle problems.

in reply to SheffieldJane

Did you ever get that awful oxygen starvation?

Not at rest ... but yes, I had this problem for years. When I had the "acute" pulmonary embolism, I actually told the emergency room doctor that I wanted to go home instead of the intensive care unit. When the doctor explained why I was short of breath, I said the shortness of breath was normal for me.

After the hospital stay, I did a follow-up visit with my GP. He apologized to me because he thought he might have missed something since I had been complaining of shortness of breath for a long time. I would describe climbing a single flight of stairs being like climbing Mount Everest.

Apparently it is possible that a person can have a chronic pulmonary embolism and not know it. Because there were so many emboli scattered throughout both lungs, it was possible that was the case. A chronic pulmonary embolism is a blockage of the pulmonary arteries that occurs when prior clots in the vessels don't dissolve over time, or because of an undetected or untreated acute PE.

The thing I remember most was lying in the intensive care bed with about 10 doctors outside my door discussing the CT scan of my lungs. I couldn't hear too much of what was being said but I could clearly hear the word "prednisone" being said frequently.

WeeMartha profile image
WeeMartha in reply to

In UK it’s only licensed for 1 year unfortunately!!

I am in Scotland and had a very successful treatment .If you look at my profile there is a lot more detail.

I know of 1 other person who is on infusion in the uk but generally we have weekly injections.

Hope whatever you decide works well for you. Take care.

I have been diagnosed with PMR and GCA for over 2 years now. I had Actemra for about a year of that, no obvious problems but not sure that it helped get me off the steroids any quicker (that’s just me).Now on 9mgs of Pred. I do feel it’s worth a try though, it may work wonders for you. Good luck.

I have GCA since 8/19 and began with 50 mg of Prednisone. Began tapering and never had much relief. Prednisone was not working for me and Dr. wouldn't consider Actemra. Changed Dr. and was put on Actemra in 3/20. No major side effects. Dr. put me on Methylprednisolone and it worked much better. I am now down to 4mg and weekly Actemra injections. Personal situation is very stressful at this time so we are going slower with tapering. This is my experience. I am in the USA.

You may want to read the article on the treatment of an 81yr old man diagnosed with GCA (stroke in eye) and was losing sight. Doctor in Southend Hospital started treatment by using INFUSION of TCZ (which is directly to the vein), which was quicker than an injection. Sight was restored in a couple of days. Now, he was the lucky one! My rheumy started me on the injection after many months on Prednisone: started at 100mg and got to 5mg when she prescribed TCZ. Now off Pred and will be injecting for some time. As far as I can tell, no side effects other than dry whispery cough/post nasal drip. So good luck to you. (the TB test is compulsory) TCZ is a new drug which is also being used to treat patients of COVID

PMRpro profile image
PMRproAmbassador in reply to jarn

Not that new - it has been used for RA for some years. First clinical trials were in 2001/2 for juvenile RA.

jarn profile image
jarn in reply to PMRpro

Well, thanks for the update; so at least they do know how/when to prescribe it.

PMRpro profile image
PMRproAmbassador in reply to jarn

Phase 3 studies for its use in GCA started in 2013 - so even there it has been in use for 7 years.

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