I hope you are all keeping safe and well!
There has been a lot of uncertainty surrounding people with MS and the current coronavirus outbreak. From what I can make out, those with MS are not overly more at risk unless you are on a DMT that suppresses the immune system or have other underlying health issues.
This led me to question the statements on the Government website as Tysabri is considered an immunosuppressant drug. However, the MS Society states that Tysabri is no extra cause for concern but they are monitoring it.
However, my MS nurse called me yesterday and advised that Tysabri is indeed an immunosuppressant and as a result I should self isolate. When I asked about a letter being sent out via, I was told that they dont know how it was working. She said that GP’s were being tasked with sending the letters but many do not have all their records in place so I may or may not receive anything. The hospitals are not getting involved at all.
My point being…there is so much confusion around this. The way I see it is I have been told direct from my neurology department. Why take unnecessary risks? The Government are shutting the entire country and prepared to make us bankrupt for the next 10 years…this is serious. Is it really worth playing devils advocate with peoples lives?!
Tysabri is an immunosuppressant - self isolate
worry about the letter later or chase the GP or neuro, but be smart and self isolate.
all the best Mick
I did not mean to sound brusque. A few years back I was on Tysabri . I caught a mild cold after an infusion . It put me in hospital as my immune system could not cope, whilst everyone else with the same cold just dealt with it.
This should have been explained to you before you started your treatment.
Totally agree with Mick. Tysabri is an immunosuppressant.
Thanks Mick & Sue.
I have been on Tysabri 10 years now so I know how it affects me on a regular basis and I consider myself lucky anyhow.
I just think the information is a bit sketchy. Still not letter but I am indeed self isolating and going crazy
Hi Steve. I too have been on tysabri for 6 years and I always used to do online shopping. Now I know I’m not in the vunerable list it means I have to go supermarket shopping. And now to make matters worse I will have to go alone when my son could help me. Apparently we are only moderate risk! My M.S nurse said i am the same risk as the general population too which made me a little angry because even on the tysabri website it states ‘higher risk of opportune infections’ Oh well. Just have to try and be careful Stay safe Becky
Hi all. New member here
Hope you are all coping as best you can
I have been on Tysabri for about 6 years now and they have changed the infusions from every 4 weeks to every 6 weeks
as I am sure you know.
Must admit I am not looking forward to going to the hospital as I believe they could be riiddled with covid 19. Does anyone know if there is an alternative drug (tablet from pharmacy) that could be taken which obviously will not be as effective but surely better than picking up the virus.
Hi, I’m currently on Tysabri and my infusions are still on the 4 week cycle. I am told the nurses will be wearing masks while treating us. My question is do you think it’s a good idea for us patients to wear a face mask when we are at the hospital having the treatment? Thanks
Hi, I’ve been on Tysabri for 4yrs and the biggest side effect for me has always been infections - namely chest infections. It quite clearly states on the Tysabri website that there is an increased risk of infection - lung, nose, throat & uti. I take a few chest infections throughout the year and actually ended up in A + E last month because of one. I also have under control asthma and a heart murmer that has never given me any bother. I am now told that none of the above puts me in the ‘at risk’ category. I was told this by both my ms nurse and neurologist. But when I called the Covid-19 advice line she said that she has NO notification that Tysabri is NO longer deemed ‘at risk’!!! She said being on any immunosuppressant drug was high risk and even with my asthma and heart murmer being fine, she said I should be self isolating and NOT leaving the house AT ALL! Her reasoning was this - even if Im being told that Tysabri is fine, a drug that increases my risk of infection and my asthma and heart murmer are under control - even with all that info…they’ve never had to fight something as catastrophic as Covid-19. And I really think she made a valid point. So Im currently self isolating and will NOT be leaving the house at all.
Thank you both for your replies
Irons I would definately wear a face mask if I could get a hold of one and that would make me feel better if the staff do too
Sb42 seems to be such conflicting advise we are being given. Any stronger treatment ie Lemtrada and any weaker drug ie avonex there appears to be definitive advise but Tysabri looks like it is constantly " under review"
Just finished a phone call to the GP surgery for a continuation of my sick note and asked the receptionist if I was high risk due to Tysabri and she replied that I was being flagged up as so and that letters were being sent out but I obviously havn’t recieved mine yet
hope this helps
Hi, I chose to wear a face mask in the end. I was the only patient that did. The nurses wore masks when they were dealing with patients. But the rest of the time they didn’t. I definetly agree with the posts about infections etc. I had a bad chest infection over Christmas that required two courses of antibiotics. Hope we all can stay safe.
I was told by my consultant that I wasn’t high risk.
But today I have received a letter from my GP saying I’m at risk of serious illness if I catch covid 19.
The letter also states it can be used as prove to an employer that you can’t work outside your home.
It’s all very confusing.
Hopefully we all will stay safe
I was told tysabri was the least risky dmd by neuro but nurses still say to cocoon as we are still at risk.
I was told didn’t need to worry even though my employers had told me to work from home. Funnily enough a week after asking and being told by the infusion nurse it was not necessary I received a letter from them telling me to self isolate! Then last week got a call from the council asking if I was ok as I was classed as vulnerable! So yes tysabri is an immunosuppressant but works differently to others so you will have white blood cells as it prevents immune system getting to the brain I believe but happy to be corrected
Amazing that after all this time we are still getting conflicting advice