Hmmm? : "Tocilizumab helps patients achieve better... - PMRGCAuk

PMRGCAuk
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Hmmm?

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"Tocilizumab helps patients achieve better control of this illness and fills what has been an unmet need," says Professor Dasgupta.

dailymail.co.uk/health/arti... <<<<< July 2018

statnews.com/2017/06/05/act... << June 2017

I'm not saying it doesn't, fill a need, (Hell, I may consider it at some point...) but should we not at least mention that it too, comes with it's own risks and side effects?

48 Replies
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Everything is a cost/benefit analysis, including getting out of bed and that glass of red wine....

Hidden
Hidden
in reply to GOOD_GRIEF

How dreadfully true....

GOOD_GRIEF
GOOD_GRIEF
in reply to Hidden

It's just life, babe...

Hidden
Hidden
in reply to GOOD_GRIEF

True dat.

DorsetLady
DorsetLadyPMRGCAuk volunteer

This may go against the grain for some, and I apologise for that, but in my personal opinion, (having been there, done it, got the T-shirt) I feel the DM article, and maybe Prof Dasgupta are unrealistically optimistic about Actemra.

No matter how good any drug is, the most important thing still is the recognition and early diagnosis of GCA. Yes I know there have been great strides under the auspices of said Prof, but it’s not filtered down nation-wide sufficiently.

I know I’m biased, but in my opinion that’s where the money should be spent, not on another medication that is not quite the wonder drug everybody seems to think it is.

If you have a late diagnosis, Actemra is still going to do nothing to restore any sight you might have already lost.

Once you are treated with the correct level of Pred the possibility of sight loss is greatly minimised, but the emphasis is on the correct level which obviously includes tapering in a sensible and timely manner to avoid relapses. Unfortunately the powers to be still don’t seem to have got that worked out yet. There is not enough consideration of individuals circumstances, and as we all know “one size does not fit all”!

Whilst we all know the side effects of steroids - they are widely documented and can be very unpleasant - they rarely are life threatening. It appears from the second link that the same cannot be said for Actemra.

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in reply to DorsetLady

All very good points DL! Thank you

Well said, DL.

Jamie345
Jamie345
in reply to DorsetLady

Hi Dorset lady I have just posted a message asking for advice! I'm asking if there is anything that can help me other than predisinone as from day 1 I never felt any relief at all I'm down to 12/12 but I put myself back up to 15m around 5 weeks ago but to no avail I'm more or less house bound and just feel so depressed I've had no quality of life since this all started last summer, I went to Spain with the family, big mistake as I did not want be there everything was so hard to do! I never told my family as they really are trying to help me, I've stayed silent for so long, I hate to says this but most days I don't want to be here ,

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Jamie345

will answer your post - give me a couple of mins!

Still not enough clear 'evidence' that it is a safe and even useful drug - so for now (despite a recent relapse) 'better the 'devil I know' .... Mind you it is not yet available here in OZ except for RA as far as I am aware.

Rimmy

There's a lot more to it.... you have to suitable for this drug in the first place - it is for patients with refractory flares and showing no response at all to steroids. Information from Prof D at the Rettondon meet recently. You say you might consider it at some point - I would say have a discussion with your Rheumy and put your mind at rest either way. I take the DM lightly but that's just me.

DLs response emphasises the need for greater awareness of the illness in the first instance. I agree and further funding would be money well spent - prevention v cure - I also know Prof D gets frustrated that the roll out of fast track clinics still falls short in many areas despite his continuing efforts - you can lead a horse to water comes to mind.....

I consider myself one of the lucky ones to be in the right place at the right time ie fast tracked and diagnosed within 24 hours, I had visual disturbance and had lost the vision in one eye, the sight returning fully as I responded well to the steroids. There is a difference in my surgery alone one doctor fully aware and reactive another - nothing....

After reading the second article I have great reservations.....

....also Prof D said there was sustained remission in 56% of patients using a combination of T and pred or just T, not high enough odds for me, as DL says you don't die from pred!

PMRpro
PMRproAmbassador

Every drug does have side effects - including the ibuprofen and paracetamol most people pop for a headache without thinking about it. They can kill you too. As can the socially acceptable drug alcohol.

I find that a sensationalist article to be honest - typical "People's Medical Journal" substance. But if it makes someone aware of GCA, how it presents and what it can do - is that SO bad? Of course - there is always the point that people are less likely to relapse if they go about reduction of the dose in a sensible way. It has been accepted by experts for years that the main cause of relapses of both PMR and GCA is due to over-eager reduction!

It does fill an unmet need - that is a fairly standard medical expression meaning there was no alternative to a single medication. There are patients who have serious problems with corticosteroids - and actually, yes, they can die if they don't stop taking it. Patients with diabetes may swing totally out of control. There are severe psychiatric effects for a small number of people.

It shouldn't be regarded as a simple answer - and in the UK at least it won't be. It's use is restricted to cases with GCA who fulfil strict criteria and only for a year in the first instance. In the USA there is a mix: doctors using it for PMR at early stages and others who won't touch it with a barge pole.

It has been in use in RA for several years, it isn't totally untried and the safety record is no worse than any of the other biologics - although it isn't any better either and that is what the stat report is about. No mention was made of the risks in that area in the data sheet, which implied it was better than other biologics which it isn't. That's the basis of the class action - and they happen all the time in the USA.

But as DL says - however good tocilizumab is (or not) it is useless without raised awareness on the part of both GPs and rheumies (because they aren't innocents in the lack of identification of possible GCA either). The greatest damage happens before the patient gets any medication.

Rimmy
Rimmy
in reply to PMRpro

YES !! PMRpro - as you say: - 'The greatest damage happens before the patient gets any medication' and THAT obviously happens much more often than it should ....'

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

oh, yes!

Thank you Melissa for sharing these articles. I too tend to be dismissive about DM articles but again if it's going to raise awareness then that's a good thing.

The other article is quite concerning and one tends to think" better the devil you know" after reading this article. As someone though who has found it really hard to come down from 21/20 mg of pred with GCA /PMR I suppose it's wishful thinking that I would love to see a drug that actually treats the problem effectively rather than masks the pain and doesn't sound so potentially risky and not tested sufficiently as this article points out. Would also though agree with DL 's point.

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in reply to Jackoh

Wouldn't we all like to see, "....a drug that actually treats the problem effectively rather than masks the pain and doesn't sound so potentially risky!" I think they RACE to get the new stuff out there and in that effort maybe get a little lax in either fully testing or disclosing results!

PMRpro
PMRproAmbassador
in reply to Hidden

But in order to do that they need either to know the mechanism of the disease or be incredibly lucky with a bit of random "Let's try this..." Which really is what a lot of doctors are doing when they try to coerce us into trying mtx or aza or whatever alongside our pred. Dejaco tells me he has had very good results with mtx, Dasgupta puts his money on lefunomide. But neither work for all patients - so are we looking at the wrong diagnosis when they work? Or are there multiple forms of PMR/GCA?

Sarah Mackie asked me the other day what I thought was the most important thing to look for and I said I thought it was a definitive test - because then you have a better chance of a correct diagnosis and very possibly a signpost to the mechanism.

Hidden
Hidden
in reply to PMRpro

Yes... I guess it is incredibly to hard to "nail it," for even the minority, let alone the majority... Yes.. you are right!!!! ... a definitive test, would be a fabulous 1st step!!!!

GREAT question about multiple forms of PMR & GCA... based on the differences in our symptoms, severity of symptoms, length of time we are affected by disease, effectiveness of Pred, etc.etc. etc.. my money is on YES!

piglette
piglette
in reply to Hidden

If you think about it most drugs do not actually cure the patient. We were talking about this the other day and we decided anti biotics did cure but we had trouble thinking of other things.

PMRpro
PMRproAmbassador
in reply to piglette

Chemotherapy could be said to cure - when it induces a long enough lasting remission. And antivirals. But you are right - not many.

But then - if you had a drug to cure every ill there wouldn't much profit...

piglette
piglette
in reply to PMRpro

You old cynic!

PMRpro
PMRproAmbassador
in reply to piglette

Cynical? Moi?????????

For me, the decision to try Actemra was simple to make. Before PMR dx, I took no prescription medication. My BP was normal, my cholesterol, too. When I started talking pred, I had to go on a BP med (valsartan, the one that was just recalled due to containing a cancer causing molecule or something) which in turn raised my cholesterol, one of the side effects of most BP medication. My gp is pushing me to go on statins, which in turn can cause diabetes. I had a EMG and something called "jitters" to rule out some neuromuscular disorders and they found that I do have some steroid-induced myopathy.

So I thought it's worth it to try and get off the pred and hopefully go into remission. But I also thought of it as an opportunity to participate in doing something for future victims of pmr/GCA. Don't want to sound dramatic, but if no one with just PMR dares go on Actemra, then we shall never know if it works or not. I had a significantly raised crp for many years and after taking Actemra, it has gone down to normal. I am so relieved by this, as I was worried that so many years of raised crp was causing havoc. I had night sweats from the get go, headaches almost constantly that the pred did nothing for. Now they are gone.

I agree with DL in that it doesn't seem like the miracle drug it was made out to be but for my individual circumstances, it was worth a try. Only time will tell.

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in reply to Gaijin

Yup, I hear ya... and I agree! I'm sure it has a lot of merit, but I'm not sure it's the panacea some would make it out to be! And hey, who knows, I am not saying I will never ask/fight for it, for myself! God knows I have had my issues with Pred... but when people using it for RA started dying, they should have said something! That makes me angry and distrustful of the drug company and the promotors! I am so happy it is woking for you and like you said it was a "no brainer," because of your health and willingness to be a bit of a "guinea pig" for other PMR/GCA (THANK YOU!!!!! ) Time will tell.. I am your biggest fan... rooting you on, all the way!!!!!

PMRpro
PMRproAmbassador
in reply to Hidden

There is an increased risk of cardiovascular problems in patients with inflammatory arthritides anyway - and people on all the other biologics also develop such problems. It isn't entirely the drug company - it is also the responsibility of the doctors, pharmacists and patients to submit adverse event notifications so they DO find the real rate of various effects once the drug is being used in a large and sick populations. No drug trial is ever big enough to establish that.

Hidden
Hidden
in reply to PMRpro

I do not disagree, but, if I DIED, it would be hard for me to report that!

If this article is to be believed, they didn't tell people on drug that "hundreds" of other people (on the drug) had died! That is what I take offence to! There should be total transparency so that people can make educated, informed decisions.

PMRpro
PMRproAmbassador
in reply to Hidden

I'm not entirely sure - but I think the "hundreds" figure was a bit of media license. I have read other articles about it. You have to look at the details to see whether ALL who died died of the claimed events. They died while on TCZ, but some of the deaths could be attributed to other causes.

Everything we take comes with its risks and side effects. Hey ho.x

Hidden
Hidden

Ain't that the truth....

Like the BP mds I was on, Valsartan, has just been recalled for causing cancer! 😱

Hidden
Hidden
in reply to Gaijin

Yeah... that would totally freak me out!!!!!

piglette
piglette
in reply to Gaijin

I think Valsartan was recalled after a change in the manufacturing process at a Chinese factory led to some sort of contamination.

PMRpro
PMRproAmbassador
in reply to piglette

edition.cnn.com/2018/07/06/...

is the earliest article I can find and I think the headline is very misleading. More recent links are clear that it is due to contamination of the drug. It is only ones made in China that are a problem.

It isn't the actve substance that causes cancer - it is something else which has got into them.

piglette
piglette
in reply to PMRpro

It looks like only the Chinese manufactured versions have been withdrawn. I wonder what happened! Lucky they found it and admitted to it.

PMRpro
PMRproAmbassador
in reply to piglette

I wonder why - I suspect they are not normally so philanthropic...

piglette
piglette
in reply to PMRpro

You are just becoming a cynic!

PMRpro
PMRproAmbassador
in reply to piglette

Becoming???? I thought you knew me better than that!

It was my OH who prescribed it to me as I had tried many other types of BP meds and they all caused me to cough continuously. He was the one that read the article about the contamination.. I didn't bother reading into it myself, I just switched to another.

Gaijin
Gaijin
in reply to Gaijin

Even if it's just a one-off thing that happened in China only, it's just one more piece of data that makes me mistrust pharmaceuticals.

PMRpro
PMRproAmbassador
in reply to Gaijin

Similar things will have happened in other parts of the world I have no doubt. But it is less pharmaceuticals as manufacturing business perhaps. One of the things we can be sure of is that pharmaceuticals are monitored very very closely and such errors will be picked up. Supplements, on the other hand, are not. And nor are the Chinese medicine substances that many people happily purchase in the mistaken belief they are "more natural".

I have been taking Actemra for 9 months and it has quite changed my life from being utterly miserable most of the time to fairly near my old self - although I still get bouts of tiredness if I overdo things.. The side effects are zero in my case and I understand a very tiny percent when you consider how long it has been taken for Rheumatoid arthritis. I think ten years. There are always side effects - even paracetamol has side effects. I think steroids are far more evil. Before - I had headaches much of the day, could hardly climb the stairs or walk more than 100 yards, could only carry half a bag of shopping and then not from the car. My head felt like a heavy weight on my neck, I had constant sinusitus - and much more - so much better now .

Hidden
Hidden
in reply to christine2715

That is great to hear!!!! I am happy it is working for you!!!!! Like I said, if steroids give me issues (as they have in the past) I would consider.... for sure!

It’s helped me immensely.

Hidden
Hidden
in reply to Terry615

Cool... another success story! Thanks

PMR2011
PMR2011
in reply to Hidden

They certainly tell you the potential side effects now. The Actemra package insert is bigger than my fridge! I read every thing about it that I could get my hands on (good and bad) before deciding. I even joined a Facebook Actemra support group, which was not very helpful for me. Having been on Pred for 6 yrs for PMR then diagnosed with GCA and feeling horrible for 7 months on Pred (tapered from 40 to 20 and couldn’t get any lower) Actemra has helped me feel almost back to baseline. I feel as though I’ve come out of a years long fog! My labs are monitored every 4-6 months for liver, kidney or pancreatic issues and all is normal. I am still on 3mg Pred and continue to taper.

Not for everyone but glad I made the decision to give it a try.

Hidden
Hidden
in reply to PMR2011

I am so happy it is working for you!!!! That is fabulous! You are not the first to share your success with it.... but we are all happy to know that it has merit and it is helping to improve people's quality of life.

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