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Covid-19 & the 3 'risk groups'

Hi there, wondering if anyone is a little confused with the middle option of 'enhanced social distancing' (moderate risk) it is neither the 12 week isolation (high risk) or the practice social distancing (low risk)! I am on Amgevita (moderate risk group) and considered a key worker (supermarket) and unsure as whether to work or not? Spoke to my Gp receptionist and feel no further forward-as in i can work if i want as long as no contact but ok to social distance for 12 weeks if i want? So confused with what i should do?
 
Hi I stopped my Amgevita injections last week after the pharmaceutical delivery driver who came to my house to deliver Amgevita told me he’d just delivered to someone with Coronavirus. I have notified my consultant through my specialist IDB nurses. The IBD nurse emailed me back to tell me they have informed my consultant, I was not told to re-start the Amgevita injection. I don’t know how long it will take to get my immune system back but it can’t come soon enough, I am so frightened.
 
Because I’m on Amgevita (I was previously on Humira) I have been told that I’m on the SERIOUS RISK LIST and must self isolate for 12 weeks. Mixed messages from medics are freaking people out. I also don’t think that GP clerical staff, through no fault of their own, fully understand these highly specialised drugs we’re on, my Hospital bypasses my GP and delivers Amgevita direct to my home.
 
OMG, i am sure it can take up to 6 months to leave the system? Going by another Crohns website Amgevita is Moderate risk? Cannot get a hold of my IBD team and my docs have basically said my choice? Was it your Crohns team that told you to isolate?
 
Hi it was my GP, I’ve not even attempted to get hold of my consultant-too busy. Regardless of what me or anyone may say Amgevita cannot work WITHOUT compromising our immune system. The drug is specifically designed to disrupt our immune system. That puts us at HIGH RISK period.
The fact of the matter is that no medic in the world can tell us that a new drug Amgevita is safe during a previously unknown viral pandemic-Covid 19.
I feel my fear is fully justified, no doctor can tell us it’s OK because they simply don’t know.
Ive got the impression that nobody wants the responsibility to advise us to continue the drug one way or the other.
I suppose the question to ask is “how much immune system do we have left whilst on Amgevita injections ?”
Who knows, maybe it should come down to good old common sense?
 
It’s a mixed bag. From what I’ve read, Coronavirus attacks the lungs, the immune system ideally then fights it off. The big problem that causes fatalities is when immune system overreacts and attacks the lungs itself. So some places are apparently using Humira to prevent the immune system overreacting.
The problem for us as I see it is the immune system being able to mount a good enough defense to get rid of it. So best outcome is not to catch it if at all possible by self isolating. How the mortgage then gets paid, who knows.

The view of my team was stay on it because you don’t want a flare (I’m on entyvio) because the hospitals will be 1. Full and 2. Full of virus people

So hunker down and stay safe xx
 

Lisa

Adminstrator
Staff member
Location
New York, USA
I'm not sure why you would stop your medication because a delivery driver delivered to a house with a Covid19 patient? Unless the delivery driver had DIRECT contact with that person, then had DIRECT contact with you - any chance of catching the virus is very very very slim to none.....

I'd think that stopping the medication would be more harmful long term, as stated above you do NOT want to end up going into a flare and chance being hospitalized.

I've been following the Covid news here in NY, between working in emergency services/response and being on Remicade I have a special interest in making sure I and my family stay safe and well.
 
As I said in my post the only thing any of us need to know and have a right to know is precisely how much immune system are we left with whilst on these immune changing drugs. Anyone noticed how quiet the big Pharma companies are? You can’t get help from them, you can’t reach your GI consultant everyone gone to ground.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Many of the medications that are immuno-suppressant actually brig down your immune response to a more 'normal' level - so you may not be as suppressed as you think. In my household, my husband and daughter are sick a LOT more than I am...yet I'm the one 'at risk' because I am on Remicade.

As far as everyone going to ground...here in NY I don't find that an issue at all. If anything, my doctors are more in touch - I called my Derm office 2 days ago, got a call back the next day (I called at the end of the day)....sent a message to my urologists' office yesterday evening and had an answer by 9am today.....

Big pharma -not sure what you are looking for from them? It would be almost iresponsible for them to come out with a blanket statement, as medications are used for a variety of issues, different doses, combinations with different medications.....directions should come from the local end.
 
Many of the medications that are immuno-suppressant actually brig down your immune response to a more 'normal' level - so you may not be as suppressed as you think. In my household, my husband and daughter are sick a LOT more than I am...yet I'm the one 'at risk' because I am on Remicade.

As far as everyone going to ground...here in NY I don't find that an issue at all. If anything, my doctors are more in touch - I called my Derm office 2 days ago, got a call back the next day (I called at the end of the day)....sent a message to my urologists' office yesterday evening and had an answer by 9am today.....

Big pharma -not sure what you are looking for from them? It would be almost iresponsible for them to come out with a blanket statement, as medications are used for a variety of issues, different doses, combinations with different medications.....directions should come from the local end.
Completely the opposite
Many of the medications that are immuno-suppressant actually brig down your immune response to a more 'normal' level - so you may not be as suppressed as you think. In my household, my husband and daughter are sick a LOT more than I am...yet I'm the one 'at risk' because I am on Remicade.

As far as everyone going to ground...here in NY I don't find that an issue at all. If anything, my doctors are more in touch - I called my Derm office 2 days ago, got a call back the next day (I called at the end of the day)....sent a message to my urologists' office yesterday evening and had an answer by 9am today.....

Big pharma -not sure what you are looking for from them? It would be almost iresponsible for them to come out with a blanket statement, as medications are used for a variety of issues, different doses, combinations with different medications.....directions should come from the local end.
 
Unforrunately here in the UK i have waited over a week for contact from IBD team and still waiting, doctors surgery has been the same feel completely in limbo!
 
Location
San Diego
Big pharma -not sure what you are looking for from them? It would be almost iresponsible for them to come out with a blanket statement, as medications are used for a variety of issues, different doses, combinations with different medications.....directions should come from the local end.
Yes, plus pharma companies are restricted by law from saying much of anything to the public about their drugs other than what is in the product labeling and package brochures. Besides, I don't think they can say precisely how immune-suppressed any given individual is because they don't know. Different people react differently to the drugs. Some are very likely to be more suppressed than others. And the only data they have about about the degree of suppression is what they learned in their clinical trials - and the compiled results of those trials already appears in the warnings sections of their product labeling that we've all already seen - general warnings to the whole population (not individuals) and a long list of possible side effects accompanied by instructions to talk to your doctor.
 
Let’s all wait and see if the Chinese publish the outcome of all the Coronavirus victims who were on the same type of immune modifying drugs that we‘re on. They already know the answers.
If not, is there any way the pharmaceutical companies could be made to disclose this information?
Don‘t you think the medical profession who prescribe these drugs have a duty to obtain that information as a matter of extreme urgency and give it to patients thus enabling us to make an informed decision whether to continue or not? Doctors are very well aware that most people on these drugs are very frightened, we need to know the truth and quick.
 

emmaaaargh

Moderator
Staff member
Many of the medications that are immuno-suppressant actually brig down your immune response to a more 'normal' level - so you may not be as suppressed as you think.
Quoting you here, Lisa, because this is something I think needs emphasising! Current thinking is that most of the IBD drugs don't make you any more likely to get COVID-19 (apart from 20mg or over of prednisone, apparently), and it's possible (not enough data yet to know, but they're currently trialling it in China) that drugs like the anti-TNFs might IMPROVE outcomes of patients with COVID-19 by reducing the likelihood of the cytokine storm that damages the lungs and can lead to death.

There currently isn't evidence suggesting that patients are any worse off for continuing to take their drugs (with the exception of the prednisone as mentioned above). GI docs across the world are keeping in touch and reviewing the status of their patients and patients in the wider literature to make sure these recommendations are as up-to-date as possible.
 
All the publications in the UK inc Gastro associations and Government clearly state that people on our type of drugs are at moderate to high risk versus the rest of the population. Furthermore it isn’t a collective generalised warning, each drug is individually named.
It was discovered that Patients who are on a combination of immune therapy drugs are at a higher risk regardless of age, however, the highest risk group of all are people over 70 years old on combination drug therapy.
The general consensus so far is that people on these drugs aren’t any more likely to catch the virus, it’s the complications that can develop If you do catch it.
China, Italy and others have already published that combination drug therapy is the worst risk.
I simply want to know the outcome of Coronavirus victims who were on Adalimumab and no other drug at the time they got infected and once infected were they advised to discontinue the drug.
How can I make a decision whether to continue the drug or not without that information?
Medics cannot say on one hand that these drugs may help you against the virus then on the other hand insist you are at high risk and must self isolate for 12 weeks, makes no sense.
Where are the facts?
 
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