Tocilizumab and Covid19: Doctors in southern Italy... - PMRGCAuk

PMRGCAuk
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Tocilizumab and Covid19

PMRpro
PMRproAmbassador

Doctors in southern Italy have been supplied with stocks of tocilizumab/Actemra to trial in Covid19 patients. It had shown good results in China - but there are so many poor quality trials that the Chinese are unable to get recruits for further work. The doctor in Naples said that they were encouraged: they gave it to 6 patients and 3 of them showed significant improvement.

Researchers at the University of Utrecht in Holland have identified an antibody. This is the first step to developing specific drugs or vaccines.

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Hidden
HiddenModerator

Thanks. Steps forward very welcome!

Thanks PMRPro. It may be baby steps but it's forward movement.

Thanks. Interesting. Do you know what the logic is? Saw on LupusUK that hydroxychloroquine is considered a possible protection.

Hidden
HiddenModerator in reply to Joaclp

pharmaceutical-technology.c...

Mombeck67
Mombeck67 in reply to Joaclp

Hydroxychloroquine opens the gateway to cells to allow zinc to enter. Zinc in the cells prevents multiplication of the virus.

youtu.be/U7F1cnWup9M

Joaclp
Joaclp in reply to Mombeck67

thank you.

PMRpro
PMRproAmbassador in reply to Mombeck67

OTOH

eveningexpress.co.uk/news/u...

Mombeck67
Mombeck67 in reply to PMRpro

No, taking Zinc will not prevent or treat COVID-19. However, Hydroxychloroquine is being used in some countries successfully to treat COVID-19 by opening the cell gateways and allowing zinc to enter the cells which prevents the virus from multiplying.

PMRpro
PMRproAmbassador in reply to Mombeck67

I don't think you can say "being used successfully" at this stage - numbers of patients are still quite small for any of the trials. In Naples, for example, they tried tocilizumab in 6 patients and 3 responded favourably. That is a justfication for doing more testing - but not something you can describe as "successful use".

Hidden
Hidden in reply to Mombeck67

You weren't referring to the zinc lozenges that you take for a cold. The doctor in the video talked about about hydroxychloroquine being a "hopeful" treatment. I thought it was a great video. At this stage, I think doctors try various medications that might work. If results look promising, that is good information to know.

I'm interested in hydroxychloroquine to treat my uveitis.

Thank you for the interesting information. Lets hope a vaccine can be developed as soon as possible... but still quite a long wait.

HeronNS
HeronNS in reply to JGBH

cbc.ca/news/canada/montreal...

Love good news~! Sure is a step in the right direction.

Thanks for keeping us updated.

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

This has probably already been posted, if so I apologize. But scary info for those that were started on pred & Actmera, then weaned off pred rapidly (one year) then stay on Actmera , weaning off that over the next 8-12 months. Now it seems that the Actmera does not act on the IL-6 as previously thought. Not sure how it is working on the Covid-19?

Hidden
HiddenModerator in reply to pugrescue

Thanks for this.... I hadnt seen this one. Got to admit I need the medical dictionary to decipher lots of theze papers! But the tone can tell you a lot. Interesting.

PMRpro
PMRproAmbassador in reply to pugrescue

In Covid19 I think it is preventing the cytokine storm that leads to catastrophic inflammation and stops breathing. But it isn't certain it works for everyone there either.

It has been clear from the clinical trials that tcz only works completely for about half of patients given it. And there was already work that showed the disease could continue its effects even with apparent remission on Actemra. This paper is just looking to clarify WHY.

The trouble is, too many doctors think it is the perfect answer, they want it to be a cure - but as I have said from the outset, it is probably a VERY expensive steroid sparer, albeit pretty effective.

Rugger
Rugger in reply to PMRpro

Oh dear! I started TCZ on Friday (the 13th!). Watch this space.....!

Luciejc
Luciejc in reply to Rugger

Me too..gave my second shot 3/13!

Hidden
Hidden in reply to PMRpro

"The trouble is, too many doctors think it is the perfect answer, they want it to be a cure - but as I have said from the outset, it is probably a VERY expensive steroid sparer, albeit pretty effective."

With all due respect, my doctor didn't think of it as a cure ... he wasn't sure if it would work and asked me if I wanted to try it if he could get it approved.

When I came to this forum for advise and anyone's personal experience I was discouraged. There were some outspoken voices who almost made me decide not to try it.

I don't think it is as expensive as other biologics used to treat other inflammatory diseases. If it helps people, I don't think the cost should be the overriding concern.

The phrase "albeit pretty effective" wasn't anything I heard you say much. It was usually something about the "scary unknown potential side effects" or "adding another layer of side effects to the known side effects of pred" as compared to the manageable side effects of pred only.

Hidden
HiddenModerator in reply to Hidden

🤦‍♀️

PMRpro
PMRproAmbassador in reply to Hidden

"with all due respect" generally means "with no respect" - thank you.

YOUR doctor may not have seen it as a cure - but some do.

It may not be as expensive as other biologics - it still has to be paid for and heathcare systems are creaking everywhere. You might tell me that they aren't in the USA, I don't know, but that is partly due to the fact that how ever many millions don't have ANY healthcare cover, never mind the sort of cover that will approve the use of biologics. And after the Covid19 episode, there will be even less funding.

And kindly don't misquote me or quote out of context.

christine2715
christine2715 in reply to PMRpro

Once you get down to one injection every 4 weeks it is not any more expensive than many medications - about £2,500 per year. Also Rheumatoid arthritis patients can have it as long as they want. Why?

Hidden
HiddenModerator in reply to christine2715

It is weird. I remember having this discussion when yours was withdrawn and I couldn't find a reason in the guidelines etc. I suppose its been used longer in RA and its only year 3 for gca. If the success level gets better as time goes on they make extend the brief. The second year study was OK in some parts but still not the results they wanted I think. It may get easier to have it prescribed IF the cost goes down in year 1. But if the current virus is successfully treated they will no doubt, as I was reminded, repatent it so the overall cost is kept high. Pred costs pennies compared to actemraeven if you spend a good few years on it.

As with all scientific knowledge, the knowledge of drugs success or otherwise changes. It also is built in the social context. If there's cash to be made.....

Hidden
Hidden in reply to christine2715

The patents on Actemra/RoActemra expired in the US on 22 December 2015 and expired in Europe on 23 April 2017.

I'm not an expert on patents. However, to be repatented, I think it would have to be improved or changed somehow to make it a "different" product. I could be totally wrong ... I really don't know for sure.

I think these biologics require a fair amount of technology to produce. Which accounts for some of the cost.

Were you on Actemra?

Hidden
HiddenModerator in reply to Hidden

Don't worry it will be.

I am thinking back to when Roche first made contact all those years ago to supply 10 people with GCA, so they could find out what patients went through - then trials - and we got one in the Freeman hospital in the North East (there were only 14 hospitals involved and they were not al in the UK). Two of our new patients they had to be new - pred and TCZ - within 15 months remission and both still in remission.

If it can help with Corvid...............

Thank you mate..........................

Thank you PMRpro - fingers crossed. 🤞

how do you think it works..would prednisone or methtrexate work also?.. err I have just started on methotrexate as well as prednisone. It seems to be helping but I'm only on 7.5mg per week and I was told to start at 15mg. Docotrs here have NO teleconferencingin Sydney. I asked if I could just get a scipt for prednsione but had to have an appointment..and two people walked in to make emergeny appointments while i was in the waiting room... one taken immediatly before me.

Also I am scheudle for a cebral angiogram on Wed (alread cancelled once last Dec), and I really am scared though I havent heard anythig about the hospital..it s all around though by 5 to 20 miles or so.

PMRpro
PMRproAmbassador in reply to Jan_Noack

TCZ in Covid19 you mean? I imagine it will be preventing the massive storm of cytokines secreted in developing the inflammatory response to the virus which is what makes the respiratory system unable to function. It doesn't happen in everyone but it is what creates the breathing problems that require a ventilator. I suspect it doesn't work for everyone - there may be more cytokines involved and TCZ is specific to IL-6.

And no, there is no evidence that steroids or methotrexate help, in fact France is suggesting that OTC steroids and antiinflammatories may worsen Covid19. Which is the first time it has been suggested we are at a greater risk. So it is up to us to make sure we reduce our risk by avoiding all contacts we can, At least with the lockdown here I can go shopping and not have to rub shoulders with others!

clieder
clieder in reply to PMRpro

Unsettling, isn't it? Thought at lower dose with adrenals at least partially active my risk was not higher than normal - just aged. Now, pred is not only not helpful, but contraindicated. Staying home!

PMRpro
PMRproAmbassador in reply to clieder

It isn't that bad!

clieder
clieder in reply to PMRpro

Indeed it is not. Just explaining voluntary separation to those who don't get it - can you believe some are still, with all of this information, taking it personally??

thanks, I thought we were more at riskas our immune system is moresuppresses so unable to fight it..and so it will maybe grow wild faster, then I thought..maybe pred and methotrexate may also lower any cytokine storm via suppressing our immune system.. looks like its only TCZ(if it helps)... do you still go out shopping? I was wondering if I should start online shpping but that too could be infected?

Hidden
HiddenModerator in reply to Jan_Noack

And the chances of delivery are remote within the week.

maria40
maria40 in reply to Hidden

Where do you live? I got mine in two days but that was last week.

Hidden
HiddenModerator in reply to maria40

Sheffield. Ocado closed itself down and the tesco had no dates. I am OK for stuff but thought if I ran out of the free food I had heard ocado were OK. I will try my local wholefood shop that will usually deliver an organic box weekly.

maria40
maria40 in reply to Hidden

I got mine from Asda; not great and a lot of substitutions which weren't really that. Going to try Tesco this week and getting fruit and veg from local organic supplier - this is no time to be thinking about the pennies which has always deterred me in the past from having the organic boxes.

Hidden
HiddenModerator in reply to maria40

Exactly. Though my unlucky streak may continue. I may ring thenm tomorrow to get it set up fir in 2 weeks or 4!!

maria40
maria40 in reply to Jan_Noack

The virus can live for 24 hrs on paper or card or 2/3 days on plastic or stainless steel. If you can separate out loose vegetables and fruit from your delivery, using gloves and leave them in an outside or porch area and spray the rest with a bleach based spray it should be okay. You would have the same risk if you bought them in a store anyway.

Just as I am trying to decide whether to restart the TCZ after the cellulitis which has not completeley cleared up yet.

PMRpro
PMRproAmbassador in reply to Teekay2

Massively difficult choice at the moment isn;t it?

My question is that if you are using strong immune suppressants. I am taking Actemra and Mycophenelate ( only normally given to prevent heart patients rejecting organs) should you self isolate? I am generally in reasonable health. I have GCA

Hidden
HiddenModerator in reply to christine2715

I am only taking the dog into open territory and if I have to shop anymore I will be careful and go at quiet times... I. E. 2am I. My 24hr shop. . Other than that I am isolating.

58yrs, diabetes, pmr, pred 7.5mg, mycophenolate 2g a day and other drugs. I will not be seeing friends or family until I feel its worth the risk. Its up to up to decide what your acceptable risk is... To yourself and others.

PMRpro
PMRproAmbassador in reply to christine2715

Mycophenolate is also used in lupus.

I personally think EVERYONE should be self-distancing or isolating if you like - but I live in Italy. I have no choice.

clieder
clieder in reply to PMRpro

I agree. With the ability to electronically connect, it is totally reasonable for most to isolate for weeks to flatten the curve. It is unfortunate that it takes so few who are cavalier, or worse, to affect so many who are complying.

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