Disappointed with Actemra

[Gaijin]

After being on Actemra since May 1st, I am now experiencing a full blown flare. At first it was like a miracle, my markers went down to normal and I was symptom free for weeks tapering from 6 to 5. Then I had that episode where my blood pressure went down to very low, which I attributed to adrenal insufficiency. Now that I have what is unmistakably a flare, I realize that that episode was due to a virus I had, which required my body to hace more prednisone, but I couldn't have adrenal insufficiency as I had been feeling great on less than the physiological dose of pred before that.

Im quite disappointed in the Actemra, I do hope that my rheumi at least, learns something from me taking it.

I have a ticket to visit Teo, my grandson who is now back at home in Shoreditch, London. The whole neighborhood is covered in graffiti! I love it but when I told my Londoner friend that my son had bought a house there, she said growing up, she was not allowed to go anywhere near the area. How times change!

[SheffieldJane]

Teo looks very sweet. I find London exciting especially the undeveloped neighbourhoods.

Was anyone able to explain why Actemra failed you? I’d love to understand better.

I am sorry that you are in the midst of a flare. Perhaps some small boy cuddles will help. Xx

[Gaijin in reply to SheffieldJane]

It's so disappointing but I think my expectations of Actemra were unrealistic. As aunties #1 and 2 say, pred is the only way to go for now, and all the hype about being able to get off completely from pred is kind of absurd IMO, specially if you have to be on Actemra long term instead of low dose prednisone. Don't see rheumi till end of October, so I am going to carry on with my planned activities till then, even if it takes being on 10 mgs again for a while and tapering from there.. Rheumi won't like it.

[DorsetLady PMRGCAuk volunteer]

Hi,

Lots of places in London (and other major cities in UK) have been “gentrified” and reinvented.

Sorry to hear you’re not getting along so well with Actemra.

[Gaijin in reply to DorsetLady]

Thank you, DL, it's disappointing but it was worth a try. I have the prescription approved through December. If nothing bad happens from takibg the Actemra, I'll go on till then, after that. I'm sticking to the pred with no complementary poisons! You were right..

[DorsetLady PMRGCAuk volunteer in reply to Gaijin]

Yes you have to try, but I think most of us “older and wiser?” ones did wonder if it would live up to the hype. Hopefully it does for some!

[PMRpro Ambassador]

When you read the clinical trials properly it is obvious that for some people it only REDUCES the dose of pred required - they don't always get off it entirely.

The Actemra works on production of IL-6, just one cytokine. There are multiple aspects to the end-result of what we generally call GCA. I don't expect anyone to read this - it makes my head ache! - but it does show how diverse the causes of the inflammation probably are. So kicking one thing into touch isn't going to sort it out for everyone. Pred does because it mops up the end product - but otherwise it's a bit like many roads leading to Rome, blocking one isn't going to stop people going the other way.

ncbi.nlm.nih.gov/pmc/articl...

I see DL has mentioned the "g" word - not sure whether it is a good thing or not...

[Gaijin in reply to PMRpro]

That makes sense, and I'm glad I tried it, it may help people on hi doses if pred, to reduce, but it does seem like the risks outweigh the be if it's for people on low dose pred like me. .

[PMRpro Ambassador in reply to Gaijin]

I really don't get why they want to use it when someone has already got to a lowish dose - though I suppose it depends how you define lowish...

[Gaijin in reply to PMRpro]

I don't either, in my case, I know it's due to wanting to lable my pmr " resistant" after only 17 months of pred treatment.

[PMRpro Ambassador in reply to Gaijin]

Where you have also had a load of other issues and been up and down the dose. They are so impatient - and really all due to ignorance.

[Gaijin in reply to PMRpro]

My rheumi's last words the last time I saw him were that the Actemra would work for sjogrens (if I had it) as well as for the PMR.

I'm not sure about the PMR, at first it felt like it was working quite noticeably but looking back, I had periods when I've felt great at approx. 7mgs.without the Actemra.

I have kind of been in denial about my endo's last words. " you were right, you have hyperparathyroidism, see you in September". That was back in March and the earliest spot available is not till mid November. I though about it, that maybe some of these symtoms I'm feeling are really from the HPT instead of the PMR, they are quite similar, but I don't think so, I'm pretty sure now that it's a proper flare and I'm just stuck at 7mg like many of us on here.

As far as the sjogrens, which I am trying to get diagnosed for (dentist's opinion don't count, I guess). I haven't felt any change whatsoever since taking the Actemra.

Hahaha. PMRpro, all this just to say, yes you are right, as usual, doctors are impatient for us to get off the pred.. Not many of them know the 5. 9 yr rule.. They still think it magically disappears in 2 years exactly.

[PMRpro Ambassador in reply to Gaijin]

How does he know? There are no completed RCTs as of January this year - and the causes seem to be rather heterogenous, with not only IL-6 but TNFalpha and IL-1 also involved - the later won't respond to TCZ.

journals.sagepub.com/doi/fu...

Interesting if rather long read...

[Gaijin in reply to PMRpro]

Boy! Am I glad and fortunate to have your imput on everything.. I may get brave and show my rheumi that, maybe if I make a photocopy and "forget" it on his desk...

But seriously, thank you for this.. Haven't read the whole article yet, but it seems to be quite relevant to those of us who have PMR and sicca. Maybe some of us have Sjogrens (it is a lot more common than PMR) instead of, or along side of PMR.

I'm noticing that most doctors these days are reticent about giving a diagnosis or changing a wrong one. They don't want to be found to be wrong or something, but it's quite a annoying.

I guess the only consolation here is that prednisone is effective in treating sjogrens, too. But sjogrens isn't self limiting I don't think.. So it IS necessary to get the right dx.

[PMRpro Ambassador in reply to Gaijin]

But thus far it is still mostly a case of managing the symptoms - and some of the drugs are horrible!

[Gaijin in reply to PMRpro]

Yes, it's a worse diagnosis than PMR, I think... at least with PMR you can have the hope that either it will burn out on its own or you can lead a near normal life on low dose pred, whereas sjorvren symptoms are so annoying having to keep moisturizing everything at night too.. never getting any deep sleep.. And you can get flares and then get better but it's for life.

[piglette in reply to Gaijin]

Venus Williams has Sjogrens and had to stop playing tennis for a while because of it. She now does a lot of work supporting people with the disease and she herself seems to have got her Sjogrens under control as she has just played in the US Open.

[PMRpro Ambassador in reply to piglette]

Due she says to her raw vegan diet...

[piglette in reply to PMRpro]

Oh no.....

[HeronNS in reply to piglette]

Might not be the diet exactly - might be something she's eliminated through following the diet. There are so many hidden chemicals in our food now it's horrifying. No wonder autoimmune disorders seem to be skyrocketing.

[Gaijin in reply to HeronNS]

I found it nearly impossible to be vegan and eat low carb. For me it would be a breeze as I was a vegan until I was old enough to buy my own food, but I would surely gain weight and I can't afford to.

I agree, Vanessa probably eliminated some food intolerance. But the weaning and waning nature of the disease is maybe how Vanessa got lucky with her timing and was able to compete. I hope she never gets a flare again, but from what I've read, its a chronic disease. She is amazing though, because I imagine sjogrens, bring autoimmune, also requires pacing and counting spoons.

[HeronNS in reply to Gaijin]

I don't think I could be vegan. I'd miss cheese. I'd miss milk in my tea and cream in my coffee.... Heck, I'm vegetarian and I salivate when I think of bacon or steak! I think I deprive myself enough....

[Gaijin in reply to HeronNS]

I'm mostly a vegetarian, it's hard to be 100% because people in Spain go out for tapas instead of dinner so the options are a shared decision andthere isn't much vegetarian in the tapas menu.. So I guess I call myself a flextarian... A weekday, mostly, vegetarian. It's not that difficult to be a low carb vegetarian, but socially, at least in my circles, it can be.

I heard a young British man call himself Flextarian on a Ted talk.

[Gaijin in reply to piglette]

From all the testimonies I've read on sjogrens , I think it is a disorder that flares up and the remits regardless of any treatment. There are more natural options for sjogrens than there are for OMR/GCA, although it is equally morbid as sjogrens patientshave a very high risk of developing non Hodgkins lymphoma. Anothercreason to gave the right diagnosis, so one can be monitored for that.

[Mstiles in reply to Gaijin]

How is Sjögrens diagnosed?

[HeronNS in reply to Mstiles]

emedicine.medscape.com/arti...

[PMRpro Ambassador in reply to Mstiles]

Mainly from symptoms - dryness all over the place - but it can really only be confirmed by a lip biopsy although there is a blood antibody test. However there is another, sicca, syndrome which is basically the same symptoms but no antibody.

[Mstiles in reply to PMRpro]

Thanks, so grateful you are here with all your knowledge!

[Jamie345]

Hi there I'm tapering down I'm on 8m I have had some awful days! I am trying to stick with the tapering! But I wonder if you could tell me what happens to you when you have a flare?

[PMRpro Ambassador in reply to Jamie345]

Your PMR/GCA symptoms return. Is that what you meant?

[piglette in reply to Jamie345]

You should stop tapering and even increase a little.

[Gaijin in reply to Jamie345]

I think my symptoms are "a flare" rather than steroid withdrawal because my symptoms now are clearly PMR, sore shoulder and "hip" muscles during use.Also, the fact Tha I felt well on 6/5 mgs, I'm pretty sure it isn't for lack of steroids.

Right when you think you have achieved single digit doses, you have other problems besides the steroid side ecffects. It's so frustrating. But I figure if the average duration for PMR is 5.9 years, there are a lot of us who must have it for longer..so this time (flare) around I'm going to just take ignore any outside influence and listen to my PMR and body.

[jinasc]

Gaijin

You might like to follow this link: versusarthritis.org/about-a...

Tocilizumab was licensed for use in RA before it was trialled for GCA. Then when clinical trials where finished for GCA it was re-named and marketed under Actemra in the USA.

I am unsure whether it is called TCZ or Actemra in the UK.

[Gaijin in reply to jinasc]

Thank you, jinasc, it's called Roactemra in Spain. I am getting it through the health system here as "compassionate" use. Whatever that means..

[PMRpro Ambassador in reply to jinasc]

gabionline.net/Biosimilars/...

The patents for Actemra expired in the US in 2015 and 2017 in Europe. That was probably why the company were so keen to find another use for it to extend their sales before what are called biosimilars could be developed. Toclizumab is the substance name, Actemra is the brand name, the original. Same as Fosamax and alendronic acid. Both names are used in the UK - but the Actemra name varies from country to country.

[jinasc in reply to PMRpro]

Thank you my friend - as you are well aware I am an old 'nobrainer' person.

[PMRpro Ambassador in reply to jinasc]

You have very little in common with Paddington Bear - there is a lot of brain there!

[Omanain]

What a beautiful little boy,

Sorry to hear you are having a bad time. I do wonder if any of these extra drugs apart from the pred really do us much good. So long as we take the calcium and vitamin D (and I am now convinced Vit K as well) of course.

Hope you will soon be feeling better.

[Gaijin in reply to Omanain]

Thank you Omanain, Iam beginning to agree with you, although I will probably never know. I felt fine on 7.5 mgs for many months without any steroid sparing agents. I will never, ever understand the insistence on the part of doctors to get people off such low doses of pred. What's the big deal?

[Omanain in reply to Gaijin]

I think it is as PMRpro says, they have not caught up with the research. I am going to go to my next rheumatolgy appointment armed with some evidence!! I am fairly sure they will want me to take MXT but personally I am not prepared to take it. I need to persuade them that I am a grown up person and prepared to take the consequences if there should be any. Fortunately my GP who is responsible for prescribing the pred seems happy to leave me to taper in my own way. The last time I saw him he did say " I'm not sure why but rheumatologist often want to rush people of pred"

I don't really know why I am under a rheumatologist. I have the diagnosis and my GP is, as I say, prescribing the pred.

[piglette in reply to Gaijin]

I suppose steroids have always had a bad name since they were introduced as the wonder drug several decades ago and it was then discovered they had nasty side effects and that is what people remember and it is always in their heads.

[Gaijin in reply to piglette]

I agree, whenever I mention that I take steroids people's jaws drop.. are you sure there isnt an alternative option that doesn't involve steroids? Of course there isn't you idiot, I want to respond...it's no picnic taking steroids, why the hell would we take it if there were an alternative? Steroids do have rather nasty side effects but what doesn't? Statins? those are even worse IMO. And we're talking about very dosis of pred here.. I havent had any noticeable side effects for months since I've been below 10mgs. It may not be so direct but as PMRpro says, profits is what drives the industry and the pharmaceutical reps visit doctors and convince them as to what to prescribe...

[Marymon]

Amazing, another Banksy!!!

Teo needs someone to hold the ladder and pass the spray cans. So I do hope you get relief soon so you can come over and hug that lovely boy.

[Gaijin in reply to Marymon]

Thank you Marymom

Hahaha... Teo has 4 passports, not sure what the use of that is, but I'm really proud of his British one that says he was born in Westminster ..I wonder if it says that on all passports of people being born anywhere in London?

[Marymon in reply to Gaijin]

Think so, as it would be where his birth was registered. All districts of London and large cities, have their own registeries. Whereas, mine shows Lyndhurst,

Hampshire, small town.

Lucky Tio having a choice.