Immunosuppressive drugs and COVID-19: I’d appreciate... - NRAS

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Immunosuppressive drugs and COVID-19

Witness2
Witness2

I’d appreciate knowing how others are thinking and feeling if taking immunosuppressive drugs for their RA.

My Rheumatologist suggested I extend the time between Enbrel injections to give my immune system a chance to recover after a typical Winter of URTIs.

I don’t know how long I’ll manage without a flare and wondered if Prednisolone might be a short term substitute only to discover steroids are also immunosuppressants.

Apart from living in a bunker for the next few months, any ideas how to minimise the risk folks?

126 Replies
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All we can do is follow government advice, hand wash, use hand sanitizer, personally I am avoiding big groups, having my shopping delivered, not going to the cinema, restaurants and so on. But still trying to get out when I can. I had a wee walk today and hope to get out tomorrow too.

I'm on a JAK inhibitor and 20mgs prednisilone a day, and not too well, but life does have to go on. The latest information is suggesting it might be June before we reach the peak of it all, we can stay home 'till then. It's difficult.

JGBH
JGBH
in reply to Mmrr

Hello Mmrr,

I too am on JAK inhibitors (Bariticinib = Olumiant) and prednisolone (reducing slowly from 20 mg/dday to 17 mg/day) and like you am not feeling well at all. It is so frightening. So will you carry on taking the biologic treatment? Can't imagine how excrutiating it would be having to stop taking this biologic for months. Have you contacted your RA consultant? Which JAK inhibitor are you taking?

I noticed you have stopped going to shops to buy food. I have not done so yet, perhaps it would be a good idea to order online from now on as the situation s escalating.

Where do you go for walks where you feel it is still safe to do so? I think it's important to go out walking in the fresh air but is it safe?

Let's hope we can survive this pandemic.

Best wishes.

Mmrr
Mmrr
in reply to JGBH

I'm not overly concerned, I'm at my history class this am. But sitting up the back away from everyone else and brought my own coffee.

I'm intending going to the farmers market tomorrow too.

I won't stop taking my meds.

I just walk locally, talk to people, but keep a wee bit distance.

JGBH
JGBH
in reply to Mmrr

Thanks for your reply. I read your health history and noticed you were eventually diagnosed with sero negative RA. I too was diagnosed with sero negative RA. They took ages to give me a diagnosis YET I was in incredible pain, could hardly walk and all my joints were swollen. It makes one wonder what exactly they're taught at medical school apart from being rather opiniated and arrogant.

Because I was so ill (a single mum with 2 young daughters) I spent a year on a hopsital ward where sero negative RA was finally diagnosed. This was when I was in my late 30s, back in late 1980s. About 20 years ago or so I was put on a biologic infusion and it helped but after 2 years it stopped working. I was then given Enbrel (Etanercept) injections and this works so well (felt I got my life back) for over 17 years, until my knees became so painful with OA, could hardly walk and pain was not great. Had 2 knee replacements (Dec 2017 and July 2018) and since then Enbrel stopped working. Benepali is a biosimilar of Enbrel, as you probably know, and although similar it is NOT the same. Yet medics will insist they are the same. Was offered it and refused it. Of course, Benepali is cheaper than Enbrel, so it's all a question of making savings rather than looking after the patient. I was then put on a biosimilar to rituximab but that did not work at all. So now on bariticinib. I cannot tolerate methotrexate at all (had it in tablet form and injection). It makes me feel as though my body is poisoned. When I told my RA consultant she insited again (what ignorant arrogance!) that was not the case. Although I am better pain-wise my RA isn't control totally. So am worried about the next step because they insist one has methotrexate with many biologics.

Mmrr
Mmrr
in reply to JGBH

Goodness you have had some saga too. A year in hospital?

I think things are moving along in recognising seronegative RD , but still a lot of nonsense hangover from bygone times.

I do try to be understanding of the shortcomings of the medical profession., I'm from a family of medics, nurse etc....but find the arrogance and disregard for patients at times very difficult.

I take little nonsense anymore, am reasonably well read, ex nurse myself, so happy to challenge.

I'm not good at the moment, hoping my emergency review goes ahead at the end of the month.

JGBH
JGBH
in reply to Mmrr

Yes, it's been quite a journey to say the least. Like you and many other people, I am well educated, intelligent and aware. I do some reliable research and have been challenging the medics for quite a long time. They don't like it but that's too bad. I don't put up with any nonsense! Tell them if I think they're fobbing me off (in a polite but firm way). They should know better than fobbing me off but...

I do feel for people who still think the medics are to be revered!!! and do not know how to counter their opinions. Of course, any decent, non-arrogant medic gets my respect but these are rare nowdays. Medecine is really not what it was.

Am sorry you're not well either. Do hope you will get your emergency review as planned. Do you find you need (your body needs) to sleep a lot... I fall asleep during the day, really can't keep my eyes open, quite often. The body has been fighting this dreadful disease for so long, plus I have Sjogren's, Raynaud's and am hypothyroid (had papillary carcinoma of thyroid in 1980, so thyroidectomy).

Am quite worried about getting this virus as I probably would not be physically strong enough to fight it. So much want to live for a few more years.... who does not, even when in much pain?

Take good care.

Mmrr
Mmrr
in reply to JGBH

I am sleeping a lot just now, over 9 hours some nights, then I have a spell of not sleeping well, i don't know why. But I'm permenantly exhausted and just love being in my bed.

I used to be high energy, outdoorsy person.

JGBH
JGBH
in reply to Mmrr

I too used to be very active, always pushing myself... but for the past 4 years life has changed drastically for me: am losing my independence... some days cooking is too much and also can’t shower at times and need a rest after the shower to recover! RA is definitely winning now which is depressing.

I suppose our bodies are fighting 24/7 huge inflammation levels, so getting tired. I don’t have any energy st all. I can’t always sleep well at night because of pain (have curvature of spin and osteoporosis in my hips). I dread going to bed. Life is getting difficult and living alone doesn’t help.

Please let me know how you will get on at your review. You can pm me if you prefer.

Mmrr
Mmrr
in reply to JGBH

I live alone too, but have a long term partner of 20 years who lives nearby. But it can be difficult at times just to keep daily tasks going, generally I just get on with it.

I will let you know how i get on. Keep in touch.

JGBH
JGBH
in reply to Mmrr

It’s useful to have someone you trust living close by.

I am unable (not unwilling) to carry out any tasks. Apart from putting the dirty washing in machine... and sometimes cooking. I have to get ready meals for when I cannot cook. Don’t like it much but better than no food. I cannot do my gardening anymore either... use to love it and have a cleaner now as cannot look after my home anymore. Losing one ‘s independence is so hard ...

My daughter lives in Suffolk and has a demanding exhausting career so don’t see her often... Used to drive down and stay with her and family for a while. Driving such a distance on motorways and busy roads has become too much. Ok to drive locally short distance.

Keep in touch. x

They talk about the higher risk being older people with underlying conditions, such as heart and lung disease, and people with suppressed immune systems such as cancer patients. I know some of us are over 80, and some of us have COPD or bronchiectasis, and that is worrying. So if you are in that category then take extra care.

And your UTIs are a bugger, so minimising biologics to control that doesn’t sound mad.

However I’m trying to stay calm. Yes I take a biologic and MTX but I am only in my 60’s, and generally in good health. So even if I did get it, I don’t feel too panicked that it would kill me. But I would prefer not to get it! So I am following the general guidance. I am being careful about choosing when and where to go out - early morning excursions when fewer people around. I am scrupulous about hand washing, and I am not visiting some elderly and frail relatives just in case I have caught it. I also have gloves to try to remind me not to touch my face when out and about.

Shalf
Shalf
in reply to helixhelix

I was thinking about those people in Italy. They are quite touchy feely people, kissing both sides of face and cuddling.

I wonder if that has caused such an outbreak. Here in the UK most don't do that. I doubt most will even shake hands as it is just now.

Bunty62
Bunty62
in reply to Shalf

That plus a fairly elderly population. Plus very sociable people.

Shalf
Shalf
in reply to Bunty62

Yes you are right Bunty

Cwendyn
Cwendyn
in reply to helixhelix

I’m in my fifties and still going to restaurants etc....I was concerned about a cruise I have booked next month, but the decision has been made for me now thankfully and I can rebook within two years.

I’m in two minds about attending a convention next week in Birmingham. I was meeting Peter Jomes and was so excited about it. I’m also on biologics, but not had one infection or a cold since being on them for 18 months now.

I do still hug everyone too 😊👩‍❤️‍💋‍👩👩‍❤️‍💋‍👩

Mmrr
Mmrr
in reply to Cwendyn

Hugging everyone seems very careless, selfish and could cause lives.

I'm on JAK inhibitors and prednisolone and have had a peroid of one infection after another. If anyone tried to hug me , they would be told in no uncertain terms to get lost and if appropriate their workplace informed so education could be provided.

Cwendyn
Cwendyn
in reply to Mmrr

It would be sad without hugging. I’m not going to wrap myself up in cotton wool. I run a business working with health clinics and they all hug too. Plus my team do too. It’s unlikely we will stop 🥰

Ajay575
Ajay575
in reply to Cwendyn

You still shaking hands 😊

Cwendyn
Cwendyn
in reply to Ajay575

Nooo. Bit too painful!

Mmrr
Mmrr
in reply to Cwendyn

It would be sad if you passed on the virus and killed someone too.

This is as much about other people, more in fact than you as as individual.

Flawed as they are, governments and the NHS know better than individuals.

Advertising a flippant disregard for public health as an individual and as a business is nothing short of shocking.

Cwendyn
Cwendyn
in reply to Mmrr

How very rude - I work in healthcare, I am not flippant just realistic. In my team, people have Crohns, Fibro and cancer so don't you dare tell me I'm being flippant. All my clients are Consultants/Osteos/Physios etc...none of them are flippant either. There is no advice from public health to self distance. You're over reacting

Mmrr
Mmrr
in reply to Cwendyn

I am following government advice and very far from over reacing.

Hugging people in time of a pandemic is shocking behaviour.

Cwendyn
Cwendyn
in reply to Mmrr

Don't be ridiculous - there's no advice for social distancing. Shocking behaviour?? Hilarious. I would imagine all the nurses/doctors are still hugging - perhaps just when you're not looking

GranAmie
GranAmie
in reply to Cwendyn

have to disagree - my family [psych charge nurse, chiro etc] have followed recent [y'day] uk public health advice here and are skyping, phoning texting etc but not calling on us at present... we all live within 15 mins radius and til now met / visited frequently, sleepovers for g'kids etc.

Cwendyn
Cwendyn
in reply to GranAmie

The advice doesn't include social distancing unless someone is poorly. Sorry, but it really isn't. Of course that may change, but it was not included in the statement yesterday afternoon. Not one of the clinics we work with have changed how they work. They are all as busy as ever. In fact, they are probably busier.

We have received two calls this week to cancel appointments due to this - just two. Callers are being asked if they have recently visited the geographic locations where it is prevalent and if they have a cough or a temperature - that is all. They are following the guidance from the government and their individual organisational bodies.

We make over 500 appointments every day for osteos/physios/chiros/podiatrists/dentists/consultants based from Scotland down to Cornwall and everything in between. I've just checked our stats and we've already made 289 new appointments this morning. None of them have any intention of closing up - in fact, it would be crazy as they would probably go bankrupt and that wouldn't help anyone in the long run.

Ajay575
Ajay575
in reply to Cwendyn

It is getting total mayhem the now ,the football leagues have broken ranks and went against gov advice and banned all games until april earliest, all those smaller workers and their wages etc ,I'm sure this is going to spread terrible the now

Cwendyn
Cwendyn
in reply to Ajay575

I think that's part of the issue. The largest employment sector in the UK is small business so the government is attempting to stem spreading alarm. All of them going bust isn't going to help anyone either. I have moved all of my team to home working as we put contingencies in place several years ago just in case. Anyone involved in travel and events is going to struggle I think whereas, company like mine could well benefit. Interesting times.... :)

Mmrr
Mmrr
in reply to Ajay575

The numbers will rise, we know this. It's all about flattening the infection curve , to enable our services to cope.

Mmrr
Mmrr
in reply to Cwendyn

Agreed. Life goes on...with a little care added in.

Mmrr
Mmrr
in reply to Cwendyn

My last comment

I was a nurse and am very much aware of infection conrtol and from a medical family and my son in law is a biomedical scientist in the coronavirus testing lab....we can all cite 'expert knowledge' although few of us actually have it.

Working with people in a medical setting does not give protection from infection.

I do hope you do not live to regret your very public dismissal of advice regarding the pandemic.

And you are misreading me I am not social distancing, never mentioned it.

As for the medical staff, they will eventually be brought into line by their health authority.

I will continue to challenge behaviour that puts others at risk. All that is required is a little care and avoidance of the obvious.

Cwendyn
Cwendyn
in reply to Mmrr

You were incredibly rude - my clients are very senior consultants etc... and yes, they are experts. Challenging is fine, rudeness isn't. Not ever.

Mmrr
Mmrr
in reply to Cwendyn

A consultant in any area of expertise is not an expert on Covid 19. Experienced people from WHO and Chief Medical Officers from the UK were at pains to try and explain their state of knowledge to the public last night. There are no experts in Covid 19. The best placed at the moment are the Chinese who have been superb in sharing what they know. My son in law gets daily updates from them, nuances along with facts.

Orthopaedic surgeons for example will know very little about spread of infection , other than theatre, many surgeons are blaze about infection control, it is a well known and documented fact, easily searchable.

Be wary, be very wary of anyone telling you they are an expert in Covid 19.

JGBH
JGBH
in reply to Mmrr

Incredible some people are prepared to jeopardise vulnerable people’s lives! Money first!

We were told not to shake hands nor kiss....

jell
jell
in reply to Mmrr

"Countries should find and test every case of coronavirus to stop the pandemic", the World Health Organization has said a day after the UK announced that only the most seriously ill will be tested.

“You can’t fight a virus if you don’t know where it is,” the WHO’s director general, Dr Tedros Adhanom Ghebreyesus.

Mmrr
Mmrr
in reply to jell

Yes indeed, so a bit care is required as we do not know where or when the virus will appear.

JGBH
JGBH
in reply to Cwendyn

Better sad than dead surely? You are not in the dangerous group: older people with many serious diseases and are on immunosuppressants.

I still would not play Russian roulette with my life and that of others: by hugging and kissing you are taking the risk of spreading the disease! It’s irresponsible.

Mmrr
Mmrr
in reply to JGBH

It's the disregard for others that I find particularly hard to deal with.

Cwendyn
Cwendyn
in reply to JGBH

Ok. Your choice I am high risk as are 2 of my team, infact more than I am. I'm comfortable with how we are as are members of my networking groups. We will continue as we are now unless guidance changes. My responsibility is firstly towards my staff, their bills and their families, secondly to my clients. The only person that would possibly be affected by my hug is me. I'm the one at risk from someone else if they have the virus, not the other way around 🙄

Mmrr
Mmrr
in reply to Cwendyn

No, if you are as yet aymptomatic , but infected you can pass the virus on.....this is the point that it appears you have missed by your last post ?

No one is immune!!!!!!

(Well there might be a minority, but my bet is you aren't one of them )

Cwendyn
Cwendyn
in reply to Mmrr

I am quite aware of that. As I'm a home worker currently as are all my team, that hasn't been out for over a week and have no symptoms, it's highly unlikely.

I will continue to run and attend the meetings unless advice changes.

This situation needs calm heads, not hysteria which is happening now. No one benefits if the economy and infrastructure collapses. At the rate things are going, that's looking likely. People need to calm down.

Mmrr
Mmrr
in reply to Cwendyn

I'm pleased you realise that you or anyone could have the virus and be asymptomatic and/or in the incubation period. The wording of your previous post didn't show this understanding.....the people at risk from a hug is both people, not just one.

Personally I don't have the same level of concern for the economy, it will recover, it always does. I believe it's the economic issues ( greed in my view...think Trump) that cause more panic than caring for each other and being kind and thoughtful.

Shalf
Shalf
in reply to Cwendyn

Hi Cwendyn, with respect I think it's very difficult to stay calm after BOJO's announcement last night that many will lose their loved one's prematurely. Not a reassuring statement!

Health comes before business in my opinion. The economy can recover eventually, will our health?

Cwendyn
Cwendyn
in reply to Shalf

I actually respected his honesty to be honest. If the economy collapses it's then you'll see social unrest and anarchy. Never good. Small businesses could be wiped out. As they're the biggest employment sector,it could spell disaster. The financial impact could far exceed the damage than that of the virus. No taxes, no money for schools, healthcare, general services. All gone.

Shalf
Shalf
in reply to Cwendyn

I know, hear what you are saying but there may not be any humans around to run any of the business's big or small if we don't all try to contain this virus.

Cwendyn
Cwendyn
in reply to Shalf

I think there will. Lots of people have already shaken it off. 😊 It's past containment now I thought? Although come to Norfolk, no reported cases here yet!

Shalf
Shalf
in reply to Cwendyn

Long may it stay that way :)

Cwendyn
Cwendyn
in reply to Shalf

It must be because we have no decent roads to get here haha. Come holiday season it will be all change I expect!

Shalf
Shalf
in reply to Cwendyn

The ice-cream van is still doing its rounds anyway :)

Just heard its tune - Yankey Doodle Dandy! Happy days 😂

Cwendyn
Cwendyn
in reply to Shalf

Hahaha. Buy one for me 😅😁

Mmrr
Mmrr
in reply to Cwendyn

Rather extreme and panicky in my view. The economy might be bumpy for a while, but it will recover. It always does.

Cwendyn
Cwendyn
in reply to Mmrr

British airways have just announced they're in trouble. Although they have always been a bit sticky. Stock market plummeted further than in 2008. Hospitality in trouble with hotel room rates dropping like a stone. Hundreds of my colleagues businesses already under pressure and unlikely to recover. It's not a myth and no, they probably won't recover as they don't have the resilience to. Most operate very lean so cashflow will be poor. Ours isn't great and a couple of months with no revenue would close us down too.

Honestly, it's not a great scenario out there.

Mmrr
Mmrr
in reply to Cwendyn

The economy will recover, will there be difficulties, most probably, is there a panic about the economy ...yes. Is there a panic about health...yes....and as you say it's not a great scenario out there, but dead people don't recover.

Mmrr
Mmrr
in reply to Cwendyn

Anarchy or Trump ? Hmmm........

Cwendyn
Cwendyn
in reply to Mmrr

Not sure what Trump has to do with this?

Mmrr
Mmrr
in reply to Cwendyn

The Trump economy, the focus of America's feeble attempts to deal with coronavirus.

jell
jell
in reply to Cwendyn

this is not hysteria. Perfectly normal to be concerned. And understand the worry about losing a business and folk not being paid.

Macron has stated that all French folk isolating will get paid for two weeks, companies will be refunded.

They are putting billions into fighting it and protecting their citizens.

When all is said and done, if a business goes under to save just ONE life, then so be it.

I feel so much for the low paid, renting, living from week to week. What will they do?

Cwendyn
Cwendyn
in reply to jell

It's hysteria. People should calm down, keep a cool head and think properly. If businesses go under it will affect everyone long term. It will affect healthcare and pensions. Those people living from week to week and renting won't even be doing that if they lose their job. If the landlord doesn't get the rent, they can't pay the mortgage and they will lose their house. The economy affects everything and we would be foolish to think otherwise

Shalf
Shalf
in reply to Cwendyn

But all this is no one's fault Cwendyn. The Government are well aware of what is happening with the economy. Don't you think maybe you are silently panicking about your business? If it's a lockdown in the UK then it's in the interest of people's life's not their livelihoods I'm afraid.

Cwendyn
Cwendyn
in reply to Shalf

Nope. I'm concerned about all my clients businesses. All 200 of them. Plus all the people and familes that own businesses in my networking group. 1400 of them there. Their anxiety is real. Imagine how many employees there could lose all their livelihood? Thousands in just one small group of people. Thousands not paying tax that supports the NHS, medicine and research. Thousands not investing in stocks that pay for state pensions. Of course I'm concerned about my business. 15 people and their familes could lose their income, their homes although it's unlikely as we are a virtual remote reception and virtual PA agency so will probably be even busier. To say the economy is unimportant is short sighted. It's the harsh truth. Sorry

Shalf
Shalf
in reply to Cwendyn

Sincerely wish you the best of luck!

Cwendyn
Cwendyn
in reply to Shalf

Thank you 🥰

jell
jell
in reply to Cwendyn

We are all anxious. It isn't all about you and your 15 employees. We are all in the same situation. We shouldn't be in a situation where we put lives over living our lives.

My son has the virus so cannot work. imagine living on ssp without getting into debt. WHEN you can actually get the ssp with all the hoops, roundabouts and OBSTACLES - why did they leave it to an overstretched 111 service to sort it out? Keeping businesses afloat over lives has nothing to do with taxes to support the NHS. Most of it doesn't reach frontline anyway. (most gets skimmed off as we all know) This government is 'supposed' to be covering the NHS, medicine and research areas - our lives shouldn't be put at risk. you shouldn't be expecting people to support you - the government should be supporting ALL of us. Give every worker isolating a living wage then your business may well survive.

The government hasn't even bought the ventilators needed yet. It's questionable as to whether we will eventually get any treatment under their current guidelines.

I feel so much for the hospital staff having to deal with he reality of the situation which is going to get far worse,

Good luck and hope all goes well for you and everyone else on here - Scary, depressing times for all :(

Cwendyn
Cwendyn
in reply to jell

In my life, it is absolutely all about my employees and clients. 5 clients went under yesterday. That's how serious this is. Everyday this week, one of them has been calling me in tears. They are my priority and always will be.

jell
jell
in reply to Cwendyn

don't you get it?

Stop being selfish.

THIS is serious - people are going to die. Lots of people. This will be a worse crisis than in Italy say our doctors. The Italians have far superior hospitals and resources yet the virus has changed - younger people are now dying.

Doctors here are blaming this government for the last 10 years.

Doctors here cannot cope and we are nowhere near our peak. china locked down. China took EVERYONE's temperature - had fever clinics, separated families, kept in isolation. These people were/are x-rayed and triaged. Repeatedly. People were dragged off the streets if they were suspected of being infected.

That's how china controlled it.

Italy didn't and are in meltdown. The young are dying. There are no beds, no equipment.

Worry about our reality rather jobs being lost or losing a few quid. Jobs will recover.

Cwendyn
Cwendyn
in reply to jell

Don’t you get it. I’m one of the most unselfish people in this world. I give my all to others and their well-being despite having severe RA. I’ve not slept or eaten at all this week as I’m trying to support clients and my team that are like my family. I’ve been on the phone with them all for 15 hours every day this week trying to calm and reassure them. It’s not about losing a few quid. You know nothing, absolutely nothing. You know nothing about me and make assumptions . My clients are literally suicidal as their world falls down around their ears as they are also trying to protect their staff and families. Oh, and did I mention, we’re all mostly in healthcare 🙄That is the reality whether you like it or not. What have you done?

jell
jell
in reply to Cwendyn

landlords can get mortgage holidays too. No one should be buying a house depending on the rent to pay the mortgage anyway.

The government are still not helping anyone at all. That's why they are doing nothing, saves them money and protects business insurers.

Cwendyn
Cwendyn
in reply to jell

I don’t even know where to start answering you here. You’re clearly not listening to anyone, including the government.

Hessie5
Hessie5
in reply to helixhelix

Thanks Helix, your posts alway make me feel so much better. Right now on train into London - I try to get the later ones to avoid the crowd. People still coughing sneezing around me with no tissues or into sleeve. I just pull my scarf up to my face I know it's not much but I feel a tinge of comfort.

helixhelix
helixhelix
in reply to Hessie5

Yes that’s what I’m doing....trying to keep my distance from people and breathe in through my nose. And glowering at anyone who so much as sniffs in my direction!

Mmrr
Mmrr
in reply to helixhelix

My son just sent me a photo of kings cross station this morning on his way to work, around 7.30.... it was empty, really empty !

JGBH
JGBH
in reply to Mmrr

My grandson lives and works in London. He’s on his way back from Austria at the moment (has been there for 10 days). It was close to the Italian border so he will contact NHS 111 on his return has had a cold. Before he flew to Austria he went to work in Portugal for a week... so he must be sure he’s ok and not spreading the virus should he have it...

Dreading him having to travel on tube on his way to work every day. I fear London will see a large epidemic.

Mmrr
Mmrr
in reply to JGBH

My son has just been sent home as someone in his office was displaying symptoms and turned up for work today .....

Most people chose to work from home, so not effected, but my son went in ...doh.....

JGBH
JGBH
in reply to Mmrr

It’s good your son was sent home. My grandson has landed at Gatwick and am now awaiting any results he might get. Hope he’s ok. Fingers crossed.

jell
jell
in reply to helixhelix

you have to keep it out of your nose - it's a respiratory disease!

JGBH
JGBH
in reply to helixhelix

Hi,

Which biologic are you on and how well is it working for you? Am on Jak inhibitor Bariticinib... working but not controlling the RA 100%. My CRP levels and ESR levels are high. My white blood cells are high too. So inflammation still rampant.

This situation is so worrying, I'm 73 so scary. Hope I can escape this virus.... like so many of us.

At my appointment yesterday my Rheumatologist said she'd been asked by a number of patients about Coronavirus and Humera and whether I had any questions. To be honest as I told her I'm more worried my total knee replacement due beginning of next month will get cancelled than actually the chance of catching it, although obviously if I do, as with all of us, it'll be worse than for the general population. I've affectively been self isolating for weeks because I can hardly walk. Prior to a late visit to Tesco Express on Tuesday evening I don't think I'd been out the house for about three weeks and my employer actively encourages you to work from home anyway due to parking issues so that isn't an issue. Another colleague in the team is also high risk but his issue is asthma and he's been working from home a lot more recently although they've got no diagnosed cases yet in the area. I really don't want to have to wait another 10 weeks as the surgeon is booked up generally that far, but to be honest I'm now expecting the worst and it gets cancelled. We'll see.

I didn't think prednisolone was immuno-suppressant, just anti-inflammatory.

helixhelix
helixhelix
in reply to NicolaP

The inflammatory response is what the immune system does to protect you, so if you suppress the inflammatory response you are suppressing your immune system.

Sue4983
Sue4983
in reply to NicolaP

Hi Nicola

I am in a similar position as I am due to have knee replacement on the 20th. After a lot of heart searching I have more or less decided to postpone it.I am in pain but I can still get around at the moment albeit slowly ! I was going ahead up until a few days ago but the way the situation is getting worse day by day I think if I can choose to cancel I should

I had a bad virus in January and have not been on Methotrexate since so my arthritis is raging along with high blood pressure thyroid problems and menopause☹️

I am seeing my GP on Tuesday to discuss it with him but I just don’t feel strong enough at the moment mentally or physically!

I also have a 94 year old Mum to look after (She is in her own home at least ) and going through huge stress both financially and family .

It’s certainly a very worrying time but as my usually very laid back daughter said to me yesterday Mum why put yourself through unnecessary risk the way you are at the moment .

NicolaP
NicolaP
in reply to Sue4983

Hi Sue

Your reasons for wanting to cancel are very understandable. From what I've been reading this evening many hospitals are looking to cancel a lot of, if not all, non-urgent operations which is understandable. My TKR is due 1 April at the Royal Orthopaedic in Birmingham, if it was at the QE (whom I'm under for RA) I would expect it to be cancelled but I suspect there is a chance being at the ROH it may to ahead but will have to see.

Both knees need TKR, the right is the worst and is 10 degrees out of alignment, the left 5-10 degrees but getting worse. I've not been able to straighten the right leg properly for almost four years and was referred as an urgent case last October but due to the surgeon being booked up I've had to wait 10.5 weeks for the first available appointment since seeing him in January. I'm really desperate to get the right knee done but am philosophical that it could well get cancelled.

Two out of my three colleagues in the same team at work are also considered high risk, one for diabetes and the other asthma/high blood pressure. The team leader today said explicitly that there is no issue with any of us working from home most or all of the time (the other colleague lives nearby and hates working from home anyway), but then the employer has a policy for this anyway and I've been doing it most days for months because of severe mobility issues and work is 20 miles away. That said I know I'm lucky in the position I am with work, it could be a lot worse.

I've not been out much for several months although need to go to some shops this weekend but will probably leave it until it is less busy. I am worried about catching it because of the RA. I just so want the TKR to go ahead and my anxiety is through the roof for a lot of reasons currently. I don't have family very close and most of my friends are some distance too so I pretty much have to do most things myself anyway when I am able.

We can only hope that things start to improve sooner than later, although that is probably me being too hopeful (something I'm not known for being).

Take care.

Sue4983
Sue4983
in reply to NicolaP

Thanks for that Nicola.After todays news I certainly won’t be having my operation.I will just have to put up with it for now.

My grandchildren came round today and I had to explain to my five year old granddaughter that Nana won’t be able to kiss her for a while It was really hard ! I really wonder how much longer I can have them visit at all !

I am supposed to be seeing my GP on Tuesday but I don’t even know if that will go ahead now !

I don’t know about you but I feel quite isolated with my worries.I do live with my husband and grown up son but although I try to explain I don’t really think they quite understand.

Take care and let me know how you’re getting on

It’s potentially disruptive to us all with or without co-morbidities. It doesn’t sound like anyone else is planning to alter meds to boost immunity. Thanks everyone above for taking the time to share those insights with me. Keep well.

jell
jell
in reply to Witness2

I have stopped mine.

KittyJ
KittyJ
in reply to jell

You’ve stopped all your RA drugs jell?

Witness2
Witness2
in reply to jell

That’s brave Jell. Is your GP going to do regular blood tests to monitor any disease activity? Mine has agreed to do that.

jell
jell
in reply to Witness2

My surgery do not do blood tests if you have stopped taking meds. Say don't need it? In fact, say you are not eligible for a flu jab if not on them?

I still take hydroxychloroquine though.

to be honest the salazopyrin gave me constant sore throat and upper chest plus don't think it was working that well. I had steroid jab in January - that was only thing that seemed to work for a while.

We are told to quit the meds if we have a cold/flu though?

The advice that had been sent out to all SLE patients on immune suppression drugs and biologicals is to continue with your drug regime as usual as going into a flare puts you at greater risk. I appreciate that RD is a different kettle of fish. I have both but my SLE is more dominant. I also have hypogammaglobulimia.

But basically, the info sent out from my rheumie dept via email today was to stick to your medication regime unless advised differently by your medical team. That is the best way to protect yourself apparently (along with the handwashing etc).

jell
jell
in reply to happytulip

we really do need questions and answers with no diversions to webpages that give very little info. And why a flare up would put us more at risk than suppressing our immune system?

Naturally people are worried. Boris has alreadymade it clear that we will probably die :O although I haven't been on a cruise!

happytulip
happytulip
in reply to jell

I am following the advice that has been sent to all patients on immune suppression medications via email from my local centre of excellence hospital. Is am.not on biologicals but I assure you I have MULTI auto-immune problems and a non existent innate immune system so I am taking the situation very seriously.

In regards to your question about a flare. If we are maintaining the status quo of our disease by taking immune suppressing drugs then we need to continue to do this because it is keeping our immune systems in check or as in check as possible. However, if you were to come off your meds and go into a flare then you are putting your body under stress, which could in turn make you more susceptible to not being able to fight at virus.

Think about it. What's worse, being on immune suppression meds and taking all the precautions as advised by the government. Or, coming off your meds, going into a very painful flare up, being stressed by a flare, being in more pain and potentially sleep deprived because of a flare.

As I've said I'm only following the advice that has been emailed to me by my medical team. And I can only answer your question about a flare up as it was explained to me.

jell
jell
in reply to happytulip

am confused - is this for SLE? (not sure what that is)

GP surgery here (Melksham, Wiltshire) do not treat you if you stop immunosuppressants. You don't have blood tests nor are you eligible for a flu jab?

happytulip
happytulip
in reply to jell

SLE, Lupus. Yes, this is the info that Lupus patients bhave been given. But many of the SLE community have RD too and are on the same combo of steroids, DMARDS and or biologicals.

I will be asking my rheumatologist this question on Monday. Should I skip a month of tocilizumab to help my body combat if I get Covid19.

roseyx
roseyx
in reply to dwsurquhart

Hi dwsurquart, I'll be interested in the answer to this question. It's occurred to me as well, also on Toc. Would the immune system become uncompromised in a month ? And would the Toc be as effective after taking a break from it? I gather sometimes a break gives the system an opportunity to build up resistance to the biologic.

I know how you feel. I tried to be optimistic , then gradually things peeled away. Had to realize that my immune system is compromised and it was time to be realistic..it's not easy. A day at a time, weighing up things as you go along.

My Rheumy nurse said they are encouraging everyone to continue their drugs. They are not advising people to stop taking them yet!

Have been to rheumy yesterday, after much discussion have decided to come off baracitinib. Have only been on it since November and not sure of significant benefit as yet. So worth reducing coronovirus risk. I can restart if I deteriorate . Still taking 20mg methotrexate though. Have been advised to avoid groups of people, hand washing etc. Just hoping I wont have significant flare. I dont think there is an easy answer here, just trying to weigh up respective risks as best we can.

Mmrr
Mmrr
in reply to ATBr

Simple measures as you describe can make a big difference, I'm still going out, but avoiding big crowds, the usual stuff. I hope you dont flare too much.

I am on lots of meds including biologic but my motto is do what you can while you can.I am returing home today after few days away coach trip.Hotel all hand gel provided and I have been washing hands as usual and more.I will not be meeting up with family for mothers day.Now home we are staying there.

Majority on trip very elderly.I am in early 60's.All this news has made me feel alot older being catorgarised

If I get to feel unwell I will omit biologic to give myself more help.

Try and keep well everyone

Cwendyn
Cwendyn
in reply to Fra22-57

Do what feels right for you. I’m still going to restaurants with friends, meetings etc...I won’t be going on the cruise next month and may give a convention a miss next week. Isolation can be as miserable to our mental health as RA. We just need to be aware and hope to heavens, that people around us aren’t dirty so and so’s.

I was returning from holiday last month on long haul via Dubai and so I left my cymzia injection an extra week hoping to up my immune response. It seemed the best way forward as I am prone to every illness around and then have great difficulty in fighting illness off.

Thanks for the replies from those of you who are considering the same thing as me: reducing or stopping your biologic to allow your immune system to recover. I’d love to hear what advice you’re given.

I wouldn’t expect blanket advice from Rheumatologists to stop treatment, that could create huge problems for individuals and the NHS.

It’s clear from this thread that some fortunate people don’t get upper respiratory tract infections (URTIs) [not to be confused with urinary tract infections UTIs] which can be a feature of Enbrel and which I’m battling against.

The reason I’m being cautious about CV19 is that I am prone to chest infections leading to pneumonia. I’m hoping for the best but preparing for the worst! So no grandchildren, no visitors (except in the garden at this point) endless hand washing and trying to listen only to Sir Patrick Valance, Chief Medical Scientist. Too much mischievous reporting going on to fill column inches and the airwaves in my opinion!

jell
jell
in reply to Witness2

Have no confidence with Mr Valence. along with Matt Hancock and Jenny Harries, their advice is oriented to saving money rather than lives, goes against top scientists/doctors around the world including the very best at the World Health Organisation.

When they talk you can tell they are evading by giving a scripted load of trollocks. disgrace to their professions.

And I bet the NHS staff/doctors treating you are saying exactly the same behind closed doors.

So scary. now we have to worry about our younger folk now the virus is hitting them hard too (Italy)

Hi I had an ear infection 5 weeks ago was on antibiotics went on holiday got an ear infection in left ear waiting to go to hospital on 29 April and was told not to have cimza until I’ve been to hospital also just started with cough and high temp told to self isolate my self for 7 days not sure if not taking infection will help though no one has told me

PS. I meant to say I’m sorry I haven’t responded to everyone personally but I’m recovering from a chest infection and still very tired. Nonetheless I really appreciate all your answers.

Sorry to hear that Neverwell and it’s similar to what’s been going on with me - except your fever. Do phone 111 if you worsen won’t you?

By the way, I have had several Enbrel holidays over the 10 years I’ve been taking it and it hasn’t stopped working. I’ve heard that it has for others though. As ever with RA, damned if you do and damned if you don’t!

I wouldn’t worry about it to be honest! I have been on Humira for a long time and ain’t really worried about it tbh. I just see it as the planet fighting back against overpopulation. A 5 billion increase in 220 years is unsustainable. If some of us die then some of us die. Always believed in reincarnation myself so it’s literally no worry for me 😂

I think people need to keep a cool head. Currently it's panic mode!

I realise it's concerning, but panicing isn't going to make it less so - probably more in fact.

Reincarnation? Interesting :)

Haha yeah. When you die you just wake up tomorrow as someone/something else but remember nothing about the day before 👌 bit like waking up with a hangover 😂 but ya always believed that since I was about 2-3 years old! Used to imagine dying and then waking up not remembering the previous life 🤷‍♂️

Ooh - interesting. How would you know if you've been reincarnated then? :)

You wouldn’t! Everyone believes they can sing or perform some amazing act of sorts... maybe you did in a past life and your junk dna has memories of it. Maybe there is no such thing as time in the conventional sense of it. Maybe we will all love each other’s lives at some point. Guess the point is people shouldn’t worry about death! We are all taught from an early age about heaven and hell and how we only get one life.... for me ever since I was super young before I even learnt about that stuff it’s always been laughable and the ideologies of those in a position of power who are ultimately attempting to keep that power. I genuinely look forward to death 😂 not in a morbid depressed way but more a sense of It’s the place humanity and all living things have visited the most yet no one alive knows anything about it 😉 I see it as an adventure and nothing more

I love how you think. It must be very empowering to feel that free. I envy you 🥰

Haha...what a gas your posts are man. :-) Thanks a million dude I needed some cheering up as I was starting to get a bit down about this virus thing! :-( Good luck when you reincarnate...something like a Golden Eagle or a Magnificent Frigate Bird would be cool....no! :-O

Peace... v:-)

happytulip
happytulip
in reply to Cwendyn

Totally agree. Panic breeds panic. It's unnecessary.

jell
jell
in reply to Cwendyn

it's panic because there is no clear help from this government.

No confidence at all. They are doing nothing at all compared to other countries. It's uncomfortable listening when you hear them, and logic telling you what they are saying doesn't make any sense whatsoever.

The virus replicates at billion per day compared to humans a billion in 50 years. its not a planet fight back, its random genetic error which makes them adaptable to the human host. there are million such errors per day, yet only make few makes the headline. if you recover billion of them dies. If you want a reincarnation you would want to be an HIV virus. The only virus against our immune system fails, the rest of the virus deaths are collateral damage.

Haha when you see little idiots on tv like Greta thunberg going on about climate this climate that... logical thing is to get rid of what causes that problem! When you have to many badgers they get culled. When you have to many alligators they get culled. Humanity seems to understand that sometimes some species need to be culled. When you have to many humans each producing 27 tonnes of carbon emissions per year (western world levels) what’s the easiest way to stop that? As far as reincarnation goes, you don’t get to choose when or who or what you come back as in my opinion. It’s not restricted to planet earth or the ego of man, you come back as what the universe needs!! Just so happens this part of the universe needs a culling. No one wants to admit to this but it’s true! By the year 2100 there will be closer to 12-13 billion on this planet! I see stuff like corona as the planet being given a chance! I just hope when the permafrost melts in a few years we get something a bit more efficient 🙏👌🤷‍♂️

Eternal existence is the folly of the human mind. the inability of the mind to accept the existence of the world without them. the mind does not exist when one dies. Reincarnation is the longing of the human mind for eternal existence. However, the concept found acceptance in many cultures as it is a simple way to discipline humans. but using it to justify killing of people beats its purpose.

the virus are the most efficient user of the carbon source, not humans.

The climate science will make tall claims, to wase resource, not utilized them efficiently. You have to live for another centuary to see the premafrost melt.

But your wish already came true. more than 5 billion people are chronic disease patients. each one will lose 10 years of life thus chronic disease already kills 1 billion people. I hope you will not call it as divine retribution, earth fight back and entropy minimization.

You say all this yet more than likely follow the Big Bang theory... if so then you had to have been something else in order to be here now. In regards to the 5 billion chronic ill folk losing 10 years, it’s not enough! Age should have a limit of between 40-50 and then that should be the end of it. A planet full of individuals will not go far!

jell
jell
in reply to Damien123123

Damien, Greta is not an idiot. she's a very clever young lady caring a lot more for our environment than what us idiot grownups do.

Apart from general instruction to avoid exposure

Dont decimate your microbiome with antibiotics. It will increase the risk of infection

Avoid immunosuppressant.

Use vitamin C and D

Heat and organic acid can make the virus lose its molecular integrity, thus make them noninfectious, but cannot prevent viral replication. if you are infected, taking citric acid may prevent the spread.

But don't take them if you are non-infected as they also decimate the microbiome.

Take good food as it is essential to develop faster immunity.

Scared! Feel I should do the normal things but worried about it. We're very vulnerable

Cwendyn
Cwendyn
in reply to Hodc

Try not to be scared. That will cause you more damage. It will hopefully all be fine.

jell
jell
in reply to Hodc

I believe it's a normal response to be scared. We have to go through all those emotions until we are able to cope with it. confidence, or lack of, in this government plays it's part too :O

I think we will cope because we are all going through the same thing.

I'm in same boat. I am 74 have RA, sjogrens and Had first bout with UC on 1st. ER gave me antibiotics so unable to take my MTX until cleared by Gastro and Rheumy who is telling me stay home.

I’ve watc

I think I will have to stay in for the next couple of weeks (well away from the public)... reason being is that I have post nasal drip (for a year) which makes me cough a lot, and I am going to scare the hell out of people if I get a bad coughing fit in public.

I went to main post office in town at christmas and went from being in the cold to hot air heaters blowing down on our heads, that was it, the drip just poured down my throat, I came out of the queue trying to re assure people I did not have a bug, am sure from the look on their faces they did not believe me.

Hayfever has just kicked in too.My lovely GP has tried everything with me to treat it, but so far no success, and the last drugs somehow gave me an infection of the side of the bridge of my nose bone (I had swelling) so have an ENT appointment in April. I have had this problem for a year.

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