I do hope this isn’t too stupid a question but as my joints are doing well and I’m now grounded (working from home) and otherwise well, am I the only person who has considered coming off Methotrexate to encourage my immune system a bit.... just until covid-19 is better understood and the ‘worst’ is over?
I’ve been on 20mg weekly by injection for 2 years, no other meds but Naproxen sometimes to settle flares. My rheumatologist has supported me coming off it twice before for a break.
I usually am great for 2-3 weeks then start to really stiffen up and end up having to go back on because I have to travel for work (not a concern now!)
I just can’t find any advice on this. I have two young kids and to be brutally honest I could cope better with being stiff and caring for them than with a flu.
Has anyone else been wondering the same - or am I crazy??
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Please ring your RA team before you do anything. I and alot of others have been told not to come off the medication, unless the nurse / consultant etc tells you to come off for a while. I know it's a worrying time, I'm nervous at the moment of going to working mixing with different people ect. Personally I remember far too clearly the pain I was in prior to starting my medication and will only stop taking my medication unless I am specifically told you. Take care x
You have more faith in your rhemy team than I have! 😆 I wouldn’t need them to specifically allow it because I’ve checked in with them and it’s personal choice - they’ve said breaks are fine, just to be easy to restart (ie keep supplies of MTX available). I just wondered if anyone else with relatively mild arthritis was considering coming off MTX temporarily as well. It’s not ideal having to consider a choice between joint pain or flu.. and of course I could end up with both which is unthinkable.
Ok, well really it's your choice, one that I wouldn't want to make, sorry I can't be anymore help than that, but for me I'm staying on them and trying my best stay safe. 😣 it's a difficult decision and I can see where your coming from.. x
I guess I probably knew the likely (sensible) answer before I asked. To be honest I find my team are perplexed by my specific case as is it (they don’t now exactly why I have arthritis, it follows no normal pattern). As time goes on I lose trust on them making decisions for me unfortunately. My friends have covid-19 as we speak and if both myself and hubby were really ill I worry for our kids. I’ll stay on it unless the advice changes xx
I think, (like others o here have said in the past) we're all so different and respond to RD so differently, which does make it difficult for the drs / consultants, maybe at your next meeting talk to them to tell them your concerns, are you Seropositive or negative? That is concerning if friends have the virus. If it helps, they have said that children aren't as risk as some others, but of course you don't want them to have it. All you can do for the moment is keep your hands and childrens hands clean and gry to keep your distance and stay safe. We just have to get through the next couple / months. I,m going to focus on September, as all being good we'll be going to Cornwall. Take care x
NRAS have posted on this subject. They said continue with your medication if you come off it you will compromise yourself as a flare can make you more susceptible to infections.
I've also read (from several sources) that someone whose RA is under control with Mtx is less likely to be susceptible to infection than someone who is flaring which is why I am sticking with the Mtx for now.
I do wonder if the advice might be different should you be unlucky enough to start showing actual signs of the virus but that's something I'm hoping to check with my rheumy this week (assuming the appointment still goes ahead).
There have been lots of posts asking the same, if you scroll through you will find them but unless you are told otherwise by your rheumy then current advice is to continue taking your meds
No, there's no way I'd consider stopping Methotrexate unless the hospital instructed me to. And even then, unless I had contracted covid19 I'd fight to stay on it.
So would you say we are the ones with underlying conditions? And if we did get it r we at the risk of becoming seriously ill ? Im not worried at all I’m on biologics to bug my mrs is worried for me .
I take “underlying” to mean anyone with suppressed immune systems. The bad cases seem to be those with very severe existing conditions, of a certain age group and male. I am treating myself as immunosuppressed and taking extra precautions but have a friends funeral on Monday... it’s getting harder to go about life in a normal way.
When they talk about underlying conditions it is heart and lung disease, diabetes and asthma and cancer patients who take high doses of immune suppressant drugs. I really don’t think we count!
Some of us have very severe arthritis- I am on methotrexate, HCQS, Sulphasalazine and biologics . All the medication is immunosuppressive and rheumy specifically told me that I am highly vulnerable . So no idea why you think we aren’t part of the ‘at risk ‘ population.
I too have severe arthritis and on MTX and a biologic, so yes we should be sensible and careful. Our immune systems are compromised, not suppressed the way a cancer patient would be who was taking high doses of chemotherapy drugs.
Because I am otherwise in reasonable health and don’t have significant heart and lung issues I don’t feel that I need to be that scared that this would kill me.
I agree to disagree on this. I have got more infections than anybody else in past 17 years (I am 35) and been hospitalised twice for life threatening stuff . Even a regular flu doesn’t go away for 3 weeks . I believe we are comparing apples to oranges . At the end of the day , we are all people who have asthma or RA or something else . There’s no way to see if the virus impacts us worse or better than a person suffering from asthma . It’s a futile exercise . It’s for us to take care and make any decisions that are important for our well being . Peace.
But what I have been saying is that it is very individual. If you have had numerous problems then your position is very different from mine, and you need to take extra care.
But for me I merely have RA, so am being careful but trying not to stress about it.
Immunosuppressed people are vulnerable. My immune system is reduced by 60% on my particular drug. I have to stop it the second I get a tickle, and in advance of and post operations.
I agree but at a recent check up with my Gp nurse last week she was talking about getting a baseline ECG (in the past she was a cardiac nurse). She advised that people with RA are at risk with heart issues (varying kinds). Interesting that my rheumatologist or nurse has never discussed this. She advised anyone on methotrexate during this period should be very careful who they mix with (I am currently off it, but remain on biologics) and watch out for symptoms and come off it then.
Is that through the rheumatologist? I was just taken aback at how open the nurse was and it was the first time anyone had talked to me about RA and it’s effects on the heart
Yes, my rheumy is spot on. Now I am biologics also checked that I went to the dentist, had had my vaccines, and had been checked by a dermatologist. She also weighs me (even tho’s my BMI is in the normal zone it’s embarrassing since she is a stick like person) and encourages me to eat properly and take exercise.
The only area she falls down on is mental health....
You’re so right I have so many issues at the moment I’m finding it so hard to stay calm I was due to have a knee replacement on Friday which Ive just cancelled and it’s so difficult to know what to do for the best Seems like this is going to be a long haul as well
I am so sorry to tell you this, but yes we are considered in the underlying conditions group. Read up on why rheumatoid itself makes you more susceptible to the virus...you will want to take extra precautions. That said be safe.
I think we are talking at cross purposes. Yes we need to be extra careful and if we get it then it is likely to be more severe. But in terms of the type of underlying conditions that could increase ones mortality risk significantly I am only just over 60, in otherwise good health, and have none of the other conditions listed as heart and lungs are adequate and I don’t have asthma or diabetes. So I PERSONALLY am not panicking. We are each very different, and our levels of fragility are very different.
If you want to give me a link to why rheumatoid itself makes me more susceptible (not just biologics or steroids) then I would gladly read it.
I will see if I can find the link and post it! For now I copied some from the info that Creaky Joints (Arthritis Group) sent out.
NEW INFORMATION: Stay home as much as possible
The CDC issued new guidelines on March 5, 2020 for people at higher risk of COVID-19 that encourage them to stay home as much as possible. The CDC describes this group as “older adults and people who have severe chronic medical conditions like heart, lung or kidney disease” but we consider those with inflammatory autoimmune conditions and anyone taking immune-suppressing medications in this group as well.
The CDC also recommends that if you do need to go out, try to avoid crowds and gatherings with large numbers of people.
Know the symptoms
The symptoms of COVID-19 are similar to those of influenza, says William Schaffner, MD, a professor of medicine in the division of infectious diseases at the Vanderbilt University School of Medicine in Nashville, Tennessee. These include:
Fever
Cough
Shortness of breath
Fatigue
Sometimes vomiting and diarrhea
Aches and pains
Complications like pneumonia
“Coronavirus is a respiratory illness and spread very readily through close contact,” Dr. Schaffner explains — for instance, if an infected person coughs or sneezes three to six feet away from you.
They clearly say in the bit you posted (and on their website) that they consider it so, not the CDC. Sadly that doesn’t make it an underlying condition 😔
I guess it depends on who you talk to. I am in Canada and it is recognized that anyone with rheumatoid or another immune suppressing condition is an underlying health condition. my rheumatologist has made this clear. hopefully where you are you will get the correct info to keep you safe.
So I am in the States, I have PSA rather than RA and I am on biologics, anti-inflamatories, as well as some prescription vitamin/mineral supplements for deficiencies. My PSA has affected my lungs as well now.
Now that all that is out, the info. here has been very clear from the government that inflammatory autoimmune disorders DO put one in the higher risk category. I have been in close contact with my rheumy, pulmonologist, cardio doc, immunologist, primary care doc, and my cousin who is an epidemiologist for one of the SF Bay Area Counties; all have told me I need to essentially be self isolating and avoiding social interaction as much as possible for duration of the outbreak. As far as dmards go, as of today it was recommended I discontinue until the outbreak passes. I ha e also adjusted my anti-inflamatories to avoid ALL that thin the blood. I will do my best with diet, and if a flare comes, I will deal with it then. I have been fighting a bit of a psoriasis flare anyway, but I will treat topically.
Bottom line is we all need to be very careful and also remember there may not be hospital beds to take care of you!
Yes, we have underlying conditions and we should be sensible and follow advice regarding precautions etc. That advice does not include stopping medication.
I would never stop unless told to do so . If you were to stop taking mtx how long would it take for yr immune system to start to work as it should , I know ours does not work as it should but if anything works to well .
Yes, we are immune suppressed. YES we count. If you do a quick google you will find that people with autoimmune disease on immune suppresssants are likely to have a severe course if they become infected. I cant believe people are saying that we don't count. That is incorrect advice! Its an individual choice. I'd much rather have a bad flare than coronavirus! And if all you're looking at is stiffness and lowered mobilty, well the choice is clear for me. But the choice is YOURS. Your rheumy is not going to call you. You have to decide for yourself. It is YOUR life. The culture here is quite "do what your rheum says". Where I am we doctors and patients are a partnership, but the patient makes the ultimate choice, under guidance from the rheum. If coronavirus is active by you, its a valid choice to go off your meds and to allow your immune system to recover. Whole countries are shutting down, for petes sake. Think about this. Just because autoimmune disease is not specifically listed, that does not mean we are not included in those that will have a more severe disease if we contract covid-19. OF course the general advice is to stay on meds. But you need to look at this as an individual. YOur disease severity, your degree of immunosupression and your likelihood of contacting the virus.
Not stupid, I had the same thought as well. I know at times when we get sick we are told to stop our meds. The most I've gone without my meds is 3 weeks as it normally takes that long before I'm symptom free. Just my opinion because I have taken breaks before. I just wouldn't stop for more than that.
I'm not, unless advised otherwise by my Rheumy. It only takes me 2/3 weeks off MTX to be in a poor way. Pain plus inflammation is a good indicator of the likelihood of damage happening. This is the immune system being encouraged, not protecting you against anything unfortunately.
You could also ways ask your team, no harm in doing so. I wouldn’t just stop them of my own accord though.
I had to come off methotrexate for a few weeks post op. Om on the same dose as you. Coming off it resulted in a massive flair up which meant I had to have high dose steroids. The steroids lower you immunity even more. My advise, and that published by the rheumatoid arthritis society, is to continue with your normal medications
It’s. Not a silly question it’s a really good question and one that is worth considering! Did your rheumatologist ever tell you how long it would take for your immune to recover after stopping the methotrexate??
I had to come off for a week before an op on my drug (not metho). Thankfully it has a short half life which is one reason I chose it. Difficult decisions.
I would not come off. It’s highly unlikely there will be the health resources you need, even less than now, to handle your eventual flare. If you are concerned about your kids, get them home now (as the US and everyone else has already done). The UK will have to close schools eventually. Prob by next week. Also remember that kids are carriers but tend to have less aggressive symptoms (not always but TEND to), so I’d be sheltering them now to avoid exposure to their classmates. Right now I would follow WHO guidelines and what US companies and schools are doing vs. the UK. It should be clear to British nationals by now that the chief medical officer is not following the scientific recommendations of epidemiologists, public health officials and the World Health Org. You need to take care of yourself. And, yes, follow NRAS advice.
I have been on 20mg of methotrexate for a year, and hydroxychloraquine. But due to another chest infection I've been off methotrexate for a couple of months, and I've decided to stay off it for the time being as my pain is currently under control. I honestly believe that cod liver oil and low impact exercise daily is helping. I've not been to the gym this week and I'm starting to feel aches in my joints. So from tomorrow I'll be back on the without videos at home. Team Body Project workouts on YouTube are low impact and only 20 minutes. Do what feels right. Might be worth a try if it's worrying you, and you can always go back on it if it gets too much. Good luck x
I chatted to my rhemy about this and was advised not to stop my weekly 15mg MTX injection but to consider lowering it to 10mg to see how I feel for 6 months. Stopping MTX usualy make the patient flare badly and the RA could attack vital internal organs. I have posted a new link in the group about Covid-19 and RA.
This was last year now with Covid-19 the protocal is to stop MTX until you get better...see this video..youtube.com/watch?v=tGxHAIp...
If it were me and I was still on methotrexate I would come off. But that's me! I'm actually not taking meds at the moment anyway.
My walking buddy developed a really nasty lung infection round the same time as me. He was in a worse state than me and whipped off the methotrexate. I'm pretty sure the methotrexate made him worse.
When I went off metho, as I couldn’t stomach it after about 14 months on it, 8 weeks later I was in ICU for 6ish weeks with Aspergillosis infection of lungs that almost got me.
Obviously everyone must choose what is best for them, but I can honestly say a massive flare is much preferable to a brush with the grim reaper imo.
I ve come off my MTX (but still take my hydroxychloroquine..in the belief that it ll help my immune. ) My late in the season flu jab might help things. Thd hydroxychloroquine, i ve kept as it .kight not have too much immunity suppression whilst also being handy in fighting viral infections...
So far am ok. I wish it was over andbwe were back to normal
I too am on Methotrexate and saw my consultant last week. I asked her if I was at higher risk than anybody else and she did confirm that that is the case. I wasn’t advised to come off the meds and to be honest, I don’t think it’s advisable as the pain you would have to deal with after coming off the meds, might make you more unwell than you can cope with right now with all the flue/ corona virus flying around. However, it is individual choice and if you feel that you can cope, than by all means listen to your body. For me, the struggle is mentally right now, worrying what if I get Corona and how will I cope especially because I’m off work right now and due to go back next week. I work in a school and my real fear is falling sick again and having to explain to employer that I need more time off- no doubt she will throw verbal abuse and threaten to dismiss! Now that schools are not closing, my stress and anxiety has sky rocketed.
Hi. I came off MTX 2 weeks ago as I had a UTI and had to take a course of antibiotics. Decided to stay off them as I caught a bad cough; I’m still taking Hydroxychloroquine. I’ve now got a temperature and feeling grotty, aching and sweaty. Am self isolating but also a bit worried that maybe I made the wrong decision and that I might get a chest infection or a flare . Am waiting for Rheumatologist to get back to me with advice (I messaged yesterday). I regret not checking with the experts first as now I’m a bit scared. In your shoes I would definitely ask your own Rheumatologist and follow advice.
After discussion with rheumy I have come off baracitinib and continued witjh 20mg methotrexate. We were not sure baracitinib was of much benefit to me after 5 months and increases coronovirus impact. methotrexate will still reduce RA impact. Would discuss with rheumy.
Hi. I asked my Rhemi nurse the same. As I seem to in a similar situation to you. I went away on holiday and was concerned with catching it and what to do. I was told ONLY if I caught it come off all meds for 2 weeks to help my body fight it. BUT take advice from a local Doctor if available.
My advice to you phone your Rhemi nurse for advice
I’ve come off to combat this virus.Im still taking Naproxen as a precaution.About 6weeks ago had Bronchitis,Dr said come off RA drugs.Did& after Anti-Bio.,steroids,Acup.&Cuppingrecovered in about a week.
We are all concerned about this new disease but I for one would only do so if my rhemy nurses told me too. Yes I’ve being told it’s ok to miss a week now and again. But it’s a personal choice at end of day I guess. I no I won’t be.
Having had the flu before Xmas I had to stop Methotrexate as I was put on Antibiotics and high steroids over a month and in hospital 2 nights on oxygen, nebuliser, drips and loads of blood tests, also Methotrexate has caused liver problems, also had a recent UTI and more Antibiotics.
I have spoken to my Rheumy Nurse and we have both come to the same conclusion that I should stay off it, because of my lung and liver conditions. She advised me that my reduced immune system whilst being on Methotrexate could greatly increase my risk of getting the Covid 19 even more, as well as the liver problem and diabetes. I am on a low maintenance dose of Prednisolone.
Got appointment with consultant next month, if not cancelled, and to discuss options with him. Recent ultrasound scan of hands revealed I’m not active at the moment, but now starting to get stiffness and pain.
We are all different and need to decide our own path, with the advice given from medics.
Hope you all keep safe and avoid this dreadful virus as much as possible.
I've been thinking the same ( stopping metoject) for awhile till this virus is more under control. I spoke to my nurse the other day about it an she was just saying not to worry about it ( the virus) and stressing out lowers you're immune system aswell 🤦♀️. I'm just confused
No your not alone. When I was on Methotrexate years ago I stopped it once and was fine 2 weeks and then went into a terrible flare up. My doctor wouldn’t see me because I went off it so I had to find another Doctor and go on it again. Right now I am on 1x a month Actemra. The doctor told me I could try every 6weeks because of side effects. I think everyone would like to get off the stuff right now but know what happens if we do. God bless you,
I have had flu and struggling to get over it, so the hospital told be to stop my MTX for a couple of weeks to help my body try and get over it as I have had a cough for 4 weeks and feeling awful, joints hurting more and aching and feeling more exhausted than usual.
No I have been wondering as well but to scared to come off it as my wrists and hands are completely stiff my wrists to but my rheumy is soooo slow to check if there is anything else he can give me Good Luck
I came off Methotrexate because of repeated infections. I have been fine, just the very odd glare p, I have taken Neproxen when needed. I feel so much better in my self now. I would rather put up with the odd stiffness rather than be on the drug, especially now with Corona virus.
Please read our updated statement on COVID-19. The advice of rheumatology experts is not to come off your medications unless you believe you are affected. Please refer to our website:
I have stopped taking my Mtx, my PsA is well controlled and has been for a long time now. I discussed it with the Rheumy nurse who was happy for me to make my own informed decision. I also have asthma and felt that having a suppressed immune system as well was too much of a risk for me. Of course we all have to make these decisions for ourselves in consultation with the experts but at the end of the day I feel very strongly that it's my body and I can make my own choices. I'm not advocating this approach for anyone else as every-bodies situations are different.
I think they make a distinction between mtx and steroids and biological in the advice on NRAS site. Also, some of the Covid patients in China and Italy were actually treated with Atanercept (biological) donated by Roche and showed improvement. Have also heard a specialist on radio say that because some of the most severe symptoms are caused by an over reaction of immune system, (cykotine storm) ppl on immune suppressants may fare better than average. In short though none of us are experts so if you trust your health professional do as they say!
I refuse to stop methotrexate because once you stop for a week or two, the pain will be severe. I also have continued to give myself my humira injections. I have had bronchitis which was diagnosed a week ago. Just wash your hands and don't get in your pets faces and just keep everything sanitary as much as possible. If you stop your meds you will regret it.
Surely your methotrexate is responsible for the improvement of your health? I contacted my Rheumatology advice line and they said carry on working, observe the usual hygiene practices and continue with all meds (including Etanercept). They also said my white blood cell count was good so that’s an indication of fighting off infections well. I have blood tests every three months.
It is not a stupid question at all. I thought as I was taking my dose of Methotrexate this week about the fact that I am placing in my body something that is weakening my natural immune system on purpose. I have been so fortunate that mtx is working well and keeping me functioning with little discomfort from my Psoriatic Arthritis. I have not discussed suspending it with my rheumy, but plan to at next appointment. For now, I hope all the precautions we are taking to not expose ourselves to this virus continue to keep us safe and healthy. Stay calm.
I can't recommend what someone else does especially if it's against your consultant's instructions. But let's just say you're not the only one struggling to take your meds, especially as they aren't particularly working that well and I've been skipping bloods because my gp keeps panicking me everytime about the results. The others will have given you sensible advice but I hope it helps to know you're not alone.
Don’t think it’s crazy. I have considered it and spoke with my GO who recommended continuing unless I have any Corona type symptoms then come off. So that’s what I’m doing. I have also been advised to self isolate as a precaution
My Rheumatology Dept has advised that patients on DMARDS should continue with their medication unless they experience "mild viral respiratory tract symptoms such as a cough or sore throat" - in which case you should stop and restart again when you feel better.
I was doing a bit of research on-line and found a 2009 dated study at academic.oup.com/rheumatolo... . That seems to support the advice.
To quote the study:" It is clear that patients with RA have a significantly increased risk of infection. This risk appears to be particularly increased in patients with increased disease severity, comorbidities (diabetes, chronic lung disease, alcoholism) and the use of corticosteroids. Infection rates are clearly increased with certain DMARDs (e.g. cyclophosphamide or AZA) but MTX appears to be associated with minimal, if any, increased infection risk. This may be because any increased risk of infection associated with low-dose MTX is offset by the improvement in immunological function secondary to controlling the inflammation, thus resulting in an overall neutral infection risk."
So there would seem to be some evidence for continuing unless you have an actual infection. Obviously you should heed actual advice from your own doctor.
Good for you for taking your health into your own hands. Do your own reading since there are great reading material on these meds and then discuss it w your Drs.
I've heard yesterday in fact that on the contrary it is very useful to continue taking methotheraxe. It's my intention once I have found a doctor to support me.
Hi, the advice with mtx is it's not likely to make you more susceptible to a worse condition if /when you get covid-19, it's generally the biologic/biosimilar /steroid group which have worse problems. Even then we're being encouraged to stay on those meds as the disease itself is somewhat of a risk factor if it's untreated. So I'd say stay on your mtx & naproxen unless & until your team advises you otherwise.
I’ve just had a telephone conversation with my usual helpful but very stressed out GP and asked him whether gmI should restart my Methotrexate or try to make do without it Did really offer much advice only if I restart I would have to self isolate but I am going to do that anyway I do feel like I’m in a flare especially feeling hot and fluey I’ve managed so far joint wise Just don’t know what to do for the best I’ve tried to get a telephone appointment with the Rheims nurse but there’s nothing for a month ! I really thought my doctor was going to give me advice but he’s just left it up to me !
I totally agree with you my daughter has Stills disease and is living over in Australia (I’m in UK). She is on methotrexate and is panicking about taking it as it lowers here immune system. I have rung 111 and our local GP but they couldn’t help me 😢. If you do find anything out please let me know? X
Take care
Yes I've been wondering the same. In fact I took M/trex about 5 days ago for first time in 3 weeks as I've had a UTI. I'm on Benepali as well. I'm scared to take it at the moment.
My RA Dr. reduced my MTX by 25 percent and put me in strict quarantine for the last year. He then took me completely off the MTX for six weeks while my vaccinations were building antibodies. The reduced meds made me a bit sore, but the trade-off was worth it in my opinion. I haven't been inside a store in a year. I have one more week until full immunity from the vaccination.
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