Tocilizumab : I’ve just seen that biologic drug... - PMRGCAuk

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Tocilizumab

MrsChips
MrsChips

I’ve just seen that biologic drug users are going to be included in the 12 week self isolation instruction, and will receive a letter. I’m taking Tocilizumab on a weekly basis, and have been reading about the research on this drug. Roche, the manufacturer, has been testing it on severe Covid 19 patients, with excellent results. Therefore I am currently feeling that , maybe, I am less likely to contract the disease. Of course I will still remain isolated for the 12 weeks but I do feel a little more confident of staying clear of anything nasty.

I wonder if there are any scientists reading this that might throw some light on this matter. My thoughts are that they are testing it as a recovery drug, not a preventative drug, which I would require at this stage.

44 Replies
oldestnewest

I am NOT a scientist or a medical person in anyway.

However when Roche, wanted to do clinical trials in the UK, I was one of those who were invited to participate in the pre information seeking with patients who had GCA.

TCZ had originally been used and licensed for Rheumatoid Arthritis and they now wanted to see if it could be used in GCA. The clinical trials went ahead.

I was not one of those who could participate, as you had to be newly diagnosed and with other criteria before you could take part, of course all people who take part in this trials, have to give their permission. The trial took place and subsequently TCZ was approved for use, first in the USA (FDA) and later in the UK (NICE). Reserved for use in the UK for GCA.

It is very expensive as all new drugs are at first.

TCZ is relatively new and as usual, all new drugs can be made for one specific illness and as time progresses they find it also does can be used for other illnesses.

I sincerely hope that it does assist in the treatment of those with Corvid.

In the meantime, do the 12 week isolation and stay well and safe.

Hope this helps.

Hidden
Hidden in reply to jinasc

Fair enough ... sounds much better than saying it is "nothing more than an expensive steroid sparing medication."

My only suggestion would be to revise--"It is very expensive as all new drugs are at first."

Maybe explain that it has been around for awhile so it is somewhat less expensive than the newer biologics.

Good to see that you qualified your level of expertise in the first sentence.

Hidden
Hidden in reply to Hidden

For goodness sake Michael....you have made your point clear several times now. That is your opinion and we know it now.

Hidden
Hidden in reply to Hidden

Doesn't hurt to repeat things because most of what is posted is repetitious and it disappears in a day or two anyway.

Hidden
Hidden in reply to Hidden

I think we have seen it several times now and your intention is clear. So I am asking you politely to stop being so dadcue. If you do not like the information and advice which you have made clear on numerous occasions then please feel free to leave the forum. If someone disagrees with you, you default to rude or snide remarks. Please refrain from such tactics.

Yellowbluebell
YellowbluebellAmbassador in reply to Hidden

The problem we have with your constant digging at certain people is that its boring and childish. Please try being less confrontational towards other members of this forum. YBB

Constance13
Constance13 in reply to jinasc

What gets me with all this isolation business (first 7 days, then 14, then 4 weeks, now 12 weeks) is - when you have isolated for the enquired time you can then go out into the (open world, anyway into the parts of the world that ARE open). You have been in isolation but it doesn't mean you are immune to the virus!!

Exactly , but that's why after you have been allowed to leave the house after Full Self Isolation everybody is still meant to follow Rigid Social Distancing Rules.

People are getting confused , they think Social Distancing is just the 2 m distance rule , hand washing and avoiding crowded areas.

If you follow the really easy to follow BBC News bulletin on all things Covid 19 , it shows Social Distance means staying at home except for essential trips , to the shops for food and medical supplies , for exercise , or employment that cannot be done at Home. Everybody who can is being encouraged to work at Home . Everybody is being told to avoid crowded or social places and stop unnecessary social visits with even close friends or family. Everybody should realise now that these rules aren't just for people who are at risk and they are to be followed for the foreseeable future.

Longtimer
Longtimer in reply to Blearyeyed

There will be lockdown soon because many aren't adhering to the rules....it's being hinted at.....serve them rig ht!

Do you think there are enough police/security officers to be able to enforce it without violence in England? I personally doubt it!!!

Hidden
Hidden in reply to Constance13

Not enough to guard the chip shop here.

I agree...

PMRpro
PMRproAmbassador in reply to Constance13

The whole point of the social distancing, and self isolation in the meantime for the very vulnerable, is to break the chain of infection. The virus can only survive as long as it has contacts to move on to once its current host has either developed immunity or died.

The way to break that movement from one host to another is either to have lots of people who are immune, the herd immunity concept, or to make it extremely difficult for in infected person to pass it on. That means avoiding others as much as possible by not going into the situation in the first place but if you can't, for shopping for food for example, if you keep at least 2m away from people it is less likely the droplet infection just from them breathing it out will reach you.

But they may contaminate surfaces by sneezing or coughing onto them or their hands and then touching things - you may touch that and then transfer it to your face where it is able to enter the body through nose, mouth or eyes. So washing your hands frequently and only touching your face when you have got clean hands reduces that risk. Sanitiser gel is a poor substitute against viruses but better than nothing.

An important factor in the virus being stamped out or the risk of meeting it being reduced to very rarely is this distancing - until there is a vaccine which will replace it to a great extent by providing the herd immunity that some politicians thought was such a good idea.

Be under no illusions - the 12 week isolation being recommended in the UK is just a start, it will be extended for the very vulnerable for as long it takes to reduce the risks for them. But the reduction of risk is really up to the rest of us - the sooner everyone does it consistently the sooner the rate of infection will fall, There are already people who live like this to avoid infections, there are few on this forum. But as long as people gather together there is a risk that it will be spread - and there will be quite a few people who become ill enough to need hospital management - because as yet there is neither cure nor drugs for mitigation. So if you are at particular risk there is a lot of sense in trying to reduce your personal risk as much as possible - if you have dodgy lungs then you are at particular risk whatever your age. But also the older you are the less likely you are to recover without long lasting lung damage, if at all.

Hidden
Hidden in reply to PMRpro

I knew why but it's just nice not to have to read the twaddle...

Constance13
Constance13 in reply to PMRpro

You know this, I know this, and all our friends on here know and respect this but, in fact, we are a minority. You can only ask people to be diligent but some will think it is taking away their personal "choice" and "freedom".

I don't envy the people in authority who have to deal with this daily (and for the foreseeable future).

PMRpro
PMRproAmbassador in reply to Constance13

I don't think many people here think it is taking away personal choice and freedom. - because the instructions here really are very clear and no nonsense. Some do of course but they are being caught and fined and they are the minority. But the mistake made in the UK - and I suspect in some other countries - is the mixed messaging. No-one can be expected to take social distancing seriously when, for example, the pubs and cafes are open - the whole point of those is to meet with others. If they are left open - like shops - then people will go there. It is hard to learn new habits - by shutting all the options for meeting in groups it reinforces the lesson.

Hand washing is another matter!

Constance13
Constance13 in reply to PMRpro

I agree! In our mini town people ARE listening. No cafe's/restaurants open. People are keeping at least 2 metres distance. Police controlling to make sure no 'groups' are forming, etc etc.

A little difficult in the supermarkets as food must be bought (not enough 'deliveries' here - that will have to change). Chemist only allows one customer in at a time. All this is different in big towns and cities.

Well they have shut all outlets of McDonalds , Subway and others in the UK from today including for take away to ensure that places that at home school children will be tempted to congregate are not open to them.

The shops are also shutting to reduce high street crowds , the parks will inevitably next because no one has learnt to follow a few simple rules and a bit of moderation .

Hidden
Hidden in reply to Blearyeyed

Can we keep Macdonald's but especially subways shut please....a high street without that yummy smell...🤢🤢

Blearyeyed
Blearyeyed in reply to Hidden

If only , the whiff of bad school dinners no longer wafting through the air , that would be a silver lining.

PMRpro
PMRproAmbassador in reply to Constance13

This morning the supermarket wasn't allowing two people to go through the door at a time, the first had to have got past the turnstile bit before the second was let in. No controls throughout the shop itself but almost everybody observed the 2m rules - except a male from the Far East who almost knocked me over in passing. There are 1m marks on the floor at the checkouts and then you had to leave by the other door.

Last week the pharmacy was allowing 2 in at a time.

Yellowbluebell
YellowbluebellAmbassador in reply to PMRpro

Our pharmacy us only letting one in at a time!! The queue went around the surgery, through the car park and out on to the main road!!

Wow! Ours delivers - and we are six kms away.

Hidden
Hidden in reply to Constance13

As one of the formally isolated......sigh ....I don't like it, but I like it better than getting dead or so ill I can't have at least the quality of life I have now. I would like it to be the other lot that are locked down....the food hoarding, filthy buggers that are drinking, dancing and walking in groups that should be locked up and in. But if staying home for 3 months or so...I did 8mths once....that's fine. It's my dog I feel for. But she has 60ft of garden to mess about in.

Hidden
Hidden in reply to Hidden

I trust myself more than I trust them or the government. And I am sure I read somewhere about some free food...result.

My day😴😴😴😝🤪😊🤣😂🤣😂😤😲🥺😢😭😭😭🤣😂🤣😂🤪🤢🤫🤦☺️🤔😁

Blearyeyed
Blearyeyed in reply to Hidden

Wondering how that will work , I assume my OH and I won't end up getting Council parcels and we wouldn't need it as we have been able to make other arrangements .

I wouldn't want to be taking up people supplies and time that I didn't genuinely need. We will see ....

Hidden
Hidden in reply to Blearyeyed

Yes that how I feel. And no good dropping me off stuff that's not veggie or low sugar...trying not to give up low carb...my diet probably better though!

I ordered a bit if liquorice as I know I wouldn't eat through it...too sweet/strong. I also ordered dentastix for the dog...guess which parcel arrived.....

Constance13
Constance13 in reply to Hidden

You made me laugh (though I don't suppose you meant to)!! "better than getting dead".😂

Hidden
Hidden in reply to Constance13

Oh I did...it is better.☺️

Obviously , as you say Tocilizumab is being experimented with as a help in the treatment of Covid 19 and has had some early results .

But it would only be of use in treatment of the infection , it is not, in anyway , a defence against contracting Covid 19 in the first place .

Only Rigid Social Distancing , Self isolation for risk groups and Hygiene Rules , particularly Handwashing and not touching your face can help reduce the risks of developing Covid 19.

PMRpro
PMRproAmbassador

I think it is not that you are less likely to contract it, your immune system is inevitably compromised and so you are at high risk of doing so.

Its role in Covid19 will be to manage the "cytokine storm" that happens in the infection in SOME patients and creates massive inflammation in the airways - much like happens in severe asthma although I don't know which inflammatory substances cause that, there are many - but one significant cause in CV is IL-6 which is the very specific target of tcz. It is once this storm starts that tcz will play a role - it is not a preventative so you are not at a lower risk.

jinasc
jinasc in reply to PMRpro

Just thought I would add, and I hope you do not mind I have added it. I have had a few emails 'asking what is IL-6'.

IL-6 = Interleukin 6. Use your search engine for more info.

REMEMBER I AM NOT A MEDIC. PMRpro already knows and since I first met up with Pro she has been my go to and prop. 💓

Hiya

I too am on Toci weekly injections and wondering exactly the same thing .. it is used to treat severe patients and I wondered if it would protect us .

I also wondered if supplys would get low 😬 , so amazing it’s helping people though.

How long have you been on it ? I’ve been injecting for 6 weeks and it’s literally turned my life around !

Claire

Blearyeyed
Blearyeyed in reply to claireyj

Please read the answers on the post above your reply if you haven't had chance to do so yet , thanks

MrsChips
MrsChips in reply to claireyj

Hi Claire, I’ve been injecting Toc since October 2019. Almost immediately my CRP levels reduced to zero. I have been able to taper the steroids to 10mg, from60mg . This is now continuing by 1mg per month. It’s obviously a wonder drug that is helping us all with inflammatory diseases. Let’s hope it can also be successful to get rid of this horrendous virus.

PMRpro
PMRproAmbassador in reply to MrsChips

It won't help get rid of the virus - it may help some patients survive what is popularly called a "cytokine storm" which causes dramatic inflammation of the sort that might be seem in severe asthma and which is what kills them.

Hidden
Hidden

I'm a retired nurse and taking Tocilizumab weekly for PMR and have had a good response. I feel that it MAY prevent a severe case of Covid19 but not prevent me from being infected. I don't know that for sure so I'm just hopeful.

Since you are taking Tocilizumab weekly may I ask how you are doing? I hope it works for you. Any feedback would be appreciated but especially in terms of general well being -- good or bad.

Teekay2
Teekay2 in reply to Hidden

Hi, I have been on TCZ weekly for a year now. Previously I was on etanercept and leflunomide for rheumatoid arthritis and it was under control. I had to come off of these when I developed temporal arteritis and am now on TCZ and pred. I have no symptoms of RA and temporal arteritis has occaisional minimal discomfort which I monitor. I had to stop the TCZ recently as I was on intravenous antibiotics and have just restarted. Have had a few old aches and pains resurface and currently have severe upper back pain which is familiar from old work wear and tear not painfull when I lie or sit still. Quite an anxious time and I decided to completeley self isolate two weeks ago.I received an email from Lloyds Pharmacy saying they would be delivering as usual. Wishing Everyone Well.

Hidden
Hidden in reply to Teekay2

Thanks --- very interesting. I had a history of reactive arthritis (RF-negative) and uveitis for 15 years before PMR was diagnosed. I then had PMR as my primary diagnosis for the last 10 years.

in January 2019, my rheumatologist decided it was time to try a biologic. He said there were two ways to approach it but opted for TCZ every two weeks. It was amazing because I was able to taper off prednisone in a couple of months. That was after 10 years of trying to taper off with little success.

Then, for some reason, I got severe uveitis after it being dormant for a long time. After a 60mg taper of prednisone, my ophthalmologist wanted to switch to Humira to control the uveitis. I was on Humira for 3 months but all the PMR aches and pains returned so I was switched back to TCZ but the dose was increased to weekly.

Now, I'm back to 2 mg of prednisone with the weekly TCZ injections for about the last 5 months. Being almost off prednisone and on TCZ is a godsend for me. I could taper off again but it isn't advised because uveitis may recur.

Blearyeyed
Blearyeyed in reply to Hidden

You cannot be sure wether Tocilizumab in your individual case will help to make your infection less severe if you are already taking . It would not protect you from developing it.

If you have reduced immunity and are in an at risk group from your health issues it is still vital that you follow the recommendations you are being given strictly to reduce your risk of contact with Covid 19.

Hidden
Hidden in reply to Blearyeyed

That's why I put --- "I don't know that for sure so I'm just hopeful." If there is one thing I have learned from a long and extensive history is that I don't know anything for sure nor am I entitled to know.

What I think I know applies just to me because we are all different with a different set of circumstances.

Blearyeyed
Blearyeyed in reply to Hidden

Although the strict rules of social distancing and hygiene regulations and minimising trips from home apply to everybody now , irrespective of your individual needs.

Only complete social isolation differs depending on your degree of individual risk.

I know you are in the US but the same rules of avoiding contact with others are still being brought in.

There is no drug or alternative health supplement that prevents infection at this time . And no guarantee of reducing your symptoms if you are using a drug that they are experimenting with in the treatment of this virus.

Let us hope, that although it will not stop you getting it - it will aid the lessen it.

I am an glass half-full person.

PMRpro
PMRproAmbassador

This is the heavy-duty version of what MAY happen in SOME patients:

thelancet.com/journals/lanc...

If you take it one sentence at a time you will see that IL-6 is only one of several cytokines involved and it is only where IL-6 is raised that tcz will be of any help. So tcz will put you at increased risk of developing it if you are exposed to the virus - and may not be the answer to YOUR particular acute respiratory syndrome.

newscientist.com/term/cytok...

whyy.org/articles/think-you...

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