Anyone on immunesuppressors?

[Zem74]

So I take azathioprine for Crohn’s disease (100mg a day) Crohns is very well controlled only a few minor flares/no hospital visits or treatments etc since diagnosis 9 years ago!
I got sent the 12 week vulnerable letter from NHS but have since been told by my IBD nurse that I’m moderate risk as the letters were blanket sent to everyone taking azathioprine and didn’t take into account dosage.

Still...this all gives me huge anxiety that if/when I do catch Covid I will end up in hospital/dead because my immune system is slightly lowered.

Is anyone on here in the same boat either medication wise or risk wise?

Or has anyone in similar position actually had Covid?

I'm on mtx and a biologic and I was never sent a letter.

I'm higher risk and should be strict social distancing but not shielding.

The anxiety is natural but if we practice hand washing, social distance and staying home as much as possible then we should be ok I think.

Thank you @Thighmageddon it’s so worrying isn’t it and doesn’t seem to be any news out there relating to immunesuppressors apart from saying that you’re of higher risk

I'm on 6-mercaptopurine and prednisilone and haven't had the shielding letter because I'm on low dosages.

Have you seen the information put together by Crohns and Colitis UK? I found it very helpful (particularly as I've had no contact from anyone at the NHS whatsoever).

crohnsandcolitis.org.uk/news/advice-for-people-with-crohns-and-colitis-self-isolation-social-distancing?fbclid=IwAR2IhclEpMPp-_84Qd99q8pVrrCVFvZxO2ybffsw97nUYy4Q86UGz3V_fhg

I'm on a biologic and sulfasalazine. I didn't get a letter. I saw a grid thing that you scored points depending on each medication you take and you total gave you a category - I think it was on the Versus Arthritis site but it focused on several autoimmune diseases. It put me in the "vulnerable" category on there which made me feel less anxious. So I'm staying at home as much as possible (I haven't been to a supermarket for weeks) and washing my hands etc.

@onemouseplace see this is where it gets confusing. I'm on low dose prednisilone (no other medication) and my doctors are saying that that is enough to put me in the shielding group.

Hi I'm on 20mg leflunomide. My immunity is very very low. I've been shielding since I had a voicemail from one of the hospitals I attend saying I am high risk. I then get two further letters from my Gp and rheumatology. The letters even said I couldn't go in the garden but I thought sod that if I can't go out for a walk I'm going in the garden. All my appointments are also over the phone at the moment too. It's been very well organised.

I’m on 50mg of azathioprine for crohn’s and no hospital visits since my emergency surgery 9 years ago. I got sent the letter but I believe I am high risk because in addition I also have well-controlled asthma (though never require hospitalisations or oral/IV steroids). I’m scared for what happens next

My adult son has crohns and on infliximab [ was also on aza until recently ], he has received numerous letters from the hospital, GP and Government, along with multiple texts to shield for 12 weeks.

His crohns is well controlled, though in the past it has been unstable.
He is self isolating rather than shielding. If we do go out it is well away from anyone else. The only time he has gone out on his own was for his infusion appointment.

I am more afraid for him than he is for himself, but at the moment he is furloughed from work so can't go out anyway.

Wow so many of us in the same boat.

There was a really useful table on IBD registry which tells you what category you fall in based on your medication. It put me in moderate risk and not vulnerable. Nurse said that anyone on azathioprine got the shielding letter as standard, but it applies to transplant patients etc who take huge doses.

Even at a moderate risk it still terrifies me that I may get really really sick from this if I catch it, but with 2 young children under 5 I can’t stay indoors all day everyday, have been taking them for quiet walks in fields/woods a couple of times per week! Other than that we are permanently indoors

I am on 10mg of leflunomide and I have been advised by the doctor that I am in the moderate risk. I am constantly being told my white blood count is dangerously low, so we self isolated earlier then lockdown and we are lucky enough to be able to just stay at home. I am using anti bacterial on my wall Letter box, door knocker and door handles and things coming into the house, I'm not sure if it helps but it makes me feel better

I did get called into the hospitals for my bloods, I advised the doctors that I was not comfortable doing that, so they arranged for me to go to a small centre instead, I wore a mask and gloves to help protect others.

I think if you can stay at home as long as possible and keep washing your hands.

I’m on 20mg leflunomide & haven’t received a letter or phone call. I’ve been taking sensible precautions.

Wow quite a few on leflunomide. Do you benefit from it much? I still feel pain despite being on it for over six weeks now.
Yes I am under quite a few different clinics and hospitals for different health reasons hence why I am high risk. I guess everyone is different

This is the rheumatologists’ chart but useful for other conditions to see the immune suppression categories www.rheumatology.org.uk/Portals/0/Documents/Rheumatology_advice_coronavirus_immunosuppressed_patients_220320.pdf

I am on 200mg Azathioprine. I got the shielding letter weeks ago back in March. I think I had the virus but got better after about 3 weeks.

I’ve been on it for around 5 years. Previously methotrexate which did nothing. I can’t remember how long it took for leflunomide to kick in. I’ve also been on hydroxychloroquine for around 15/16 years.

I take 75mg of azathioprine a day (I think this is a low dose) and have been shielding since I received letters from both my gp and hospital consultant labelling me as being extremely medically vulnerable.

The NHS ‘who’s at highest from Coronavirus’ page has changed slightly recently and now it seems I am just a moderate risk.

I think it depends what a high/low dose of immunosuppressant actually is. Does anyone know?

@Zem74 not me but DP is also on azathioprine (2 a day.. however much that is). He got the sheilding letter but has since had correspondence from his doctors saying that if it's only azathioprine and no other immunosuppressants then the risk is reduced a lot (it sounds similar to what you read). We are sheilding to the extent possible (not going to shops etc) but still going for walks (it's quite quiet around here). We were originally isolating from each other for 2 weeks after each time I went to hospital (I'm preggers) but tbh the affect on my mental health was too great so we're no longer doing that (will obvs isolate if either of us has symptoms). It is very stressful and tough - remember your mental health is important too

Shielding. I can't spell..

@30ishiwish I think it depends on a persons weight what is considered high/low dose

Does anyone on prednisolone know how long you remain immune-suppressed after stopping it? I was on 25mg 8 weeks ago, weaned to 20mg at lockdown (drs advice), and then gradually weaned off it completely. I took my last dose of 5mg 10 days ago. I’d been on it for a total of 12 weeks (first trimester of pregnancy, no other conditions). My dr was quite vague and said my immune system would recover quickly (though obviously still slightly suppressed because I’m pregnant), but just wondered whether anyone here had any idea? I’ve been shielding other than hospital appointments which have felt quite stressful!

It's all a bit confusing. I'm on azathioprine, on a higher dose than you and I also have type 1 diabetes and I didn't get a letter, so there wasn't a blanket mail out for all azathioprine users. But, I did get a shielding letter in the second tranche of letters that went out after input from GPs, because I have compound high risk from being in two vulnerable categories.

I'm able to work from home, so it hasn't been a big problem apart from the cabin fever. My worry at the moment is that I'm unable to get my azathioprine prescription because there appears to be a manufacturer shortage - anyone else having this problem? I really don't want to change drugs at the moment, not much room for careful monitoring and support.

I'm on methotrexate and sulfasalazine for Crohn's and enteropathic arthritis.

Gastroenterologist has placed me into shielded category because I've also got a heart and lung condition that they are investigating so he thinks everything combined puts me at very high risk.

I've been very careful and have followed the letter but I'm seriously considering what to do next. I am at work, though I'm off on full pay for the initial twelve weeks of shielding but then what? I wish someone would tell us if they are putting anything in place for those of us who normally work. I'm not sure that I want to, or can afford to just quit my job but how much risk would I be at if I stop shielding?

www.bsg.org.uk/covid-19-advice/bsg-advice-for-management-of-inflammatory-bowel-diseases-during-the-covid-19-pandemic/

IBD nurse told me to read BSG advice above. it's a lot clearer than the NHS site.

Yes @minnie465 this is the link I was referring to, so helpful!

Was just wondering really if there are any stories from anyone who is classed as vulnerable/high risk that has had Covid? And did it seem you got it worse than your average person?

I'm on mtx and a biologic and I was never sent a letter

Dh is the same, also for Chrohn's, humira and mtx. He's going back to work this week (manufacturing). I'm a bit worried but he isn't so much

We think we have had the virus after skiing at half term in France. But I'm not sure as we weren't tested as it wasn't Italy.

He was quite ill for about a week, but not breathless. Vomited and nasty flu type thing, headache. Coughing up brown phlegm. GP was rung and prescribed some antibiotics in case of chest infection to get over, seemed to help, still unsure but he says it was not like a normal chest infection.

Rest of us had a nasty cold and sore throat. I'd like to hear other recovery stories, found one from lupus at local hospital but that is a bit different as more organs involved.