We just have to get through the next couple / months. Is that through the rheumatologist? Has anyone else been wondering the same - or am I crazy?? I have been fighting a bit of a psoriasis flare anyway, but I will treat topically. 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. 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. Using allogeneic, off-the-Shelf, SARS-Cov-2-specific T cells to treat high risk patients with COVID-19. Now I am biologics also checked that I went to the dentist, had had my vaccines, and had been checked by a dermatologist. Yes, we have underlying conditions and we should be sensible and follow advice regarding precautions etc. You could also ways ask your team, no harm in doing so. I totally agree with you my daughter has Stills disease and is living over in Australia (I’m in UK). I've heard yesterday in fact that on the contrary it is very useful to continue taking methotheraxe. It's natural to feel concerned if you get COVID-19, but remember that most people who catch coronavirus, including those who take immunosuppressant medicines, make full recoveries. Overall, we recommend that drug monitoring during the COVID-19 pandemic is prioritised for patients that will gain most benefit, i.e. I wouldn’t just stop them of my own accord though. The findings were presented today at the EULAR e-congress. The only area she falls down on is mental health.... Ah the mental health side of things - it’s hard getting it across the affects it has on us and how to keep afloat!!! 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'm actually not taking meds at the moment anyway. Contact your GP or specialist care provider, if you fall into one of these groups and have not received a letter. Obviously you should heed actual advice from your own doctor. 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. Also, some of the Covid patients in China and Italy were actually treated with Atanercept (biological) donated by Roche and showed improvement. X. To quote the study:" It is clear that patients with RA have a significantly increased risk of infection. I went away on holiday and was concerned with catching it and what to do. My PSA has affected my lungs as well now. So I PERSONALLY am not panicking. So no idea why you think we aren’t part of the ‘at risk ‘ population. My advise, and that published by the rheumatoid arthritis society, is to continue with your normal medications. That seems to support the advice. Peace. It only takes me 2/3 weeks off MTX to be in a poor way. NEW INFORMATION: Stay home as much as possible. Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them. Advice for people at higher risk from coronavirus (COVID-19), including older people, people with health conditions and pregnant women. 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. 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. I haven’t read that RA is an underlying condition Cherpr, where have you read that please? 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. I'm not, unless advised otherwise by my Rheumy. 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. As far as dmards go, as of today it was recommended I discontinue until the outbreak passes. Not stupid, I had the same thought as well. Many things can cause a weak immune system (immunosuppressed). For now, I hope all the precautions we are taking to not expose ourselves to this virus continue to keep us safe and healthy. Yes we need to be extra careful and if we get it then it is likely to be more severe. If you are concerned about your kids, get them home now (as the US and everyone else has already done). Doh. I will do my best with diet, and if a flare comes, I will deal with it then. I too have severe arthritis and on MTX and a biologic, so yes we should be sensible and careful. She advised that people with RA are at risk with heart issues (varying kinds). Most people with rheumatic diseases such as arthritis can recover from Covid-19, as the immunosuppressant medications they take do not appear to increase hospitalisation risk, finds an international study involving UCL. There’s no way to see if the virus impacts us worse or better than a person suffering from asthma . "This will support rheumatologists and other health care professionals, such as specialist nurses, in advising their patients and improving their care.". Yes I’ve being told it’s ok to miss a week now and again. If you are in this group you will receive a letter from the Chief Medical Officer. For now I copied some from the info that Creaky Joints (Arthritis Group) sent out. here has been very clear from the government that inflammatory autoimmune disorders DO put one in the higher risk category. Think about this. The research team analysed data from 600 people with rheumatic diseases such as arthritis and lupus, who were infected with COVID-19, in 40 countries. God bless you, I’ve come off my Mxt 100%... for me it’s worth my immune system being in a better state due to my heart condition. 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. COVID-19 (SARS-CoV-2) is a new type of coronavirus that causes flu-like respiratory symptoms including shortness of breath, fever, cough and fatigue. I know at times when we get sick we are told to stop our meds. "It is necessary, however, to gather more knowledge about the course of an infection with the novel coronavirus in patients with inflammatory rheumatic conditions. For my drug if I show any signs of any infection I must stop. Inflammatory conditions in themselves can raise the risk of infection and this risk is likely to be even higher if the inflammatory condition is untreated or poorly controlled. And even then, unless I had contracted covid19 I'd fight to stay on it. Thankfully it has a short half life which is one reason I chose it. ", But one type of medication may increase the risk of hospitalisation, suggesting caution is needed, according to the study published in, The study comes out of a new initiative led by Dr Pedro Machado (UCL Queen Square Institute of Neurology and UCL Centre for Rheumatology, ), the European Register of COVID-19 disease in patients with rheumatic diseases, sponsored by the. My late in the season flu jab might help things. The researchers found that the intake of conventional disease-modifying antirheumatic drugs (csDMARDs) – such as anti-malarial drugs or methotrexate – alone or in combination with biologics (e.g. But one type of medication may increase the risk of hospitalisation, suggesting caution is needed, according to the study published in Annals of the Rheumatic Diseases. My friends have covid-19 as we speak and if both myself and hubby were really ill I worry for our kids. Highest risk group. 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. Do what feels right. Any person with a chronic medical condition may be considered at increased risk for developing complications from the novel coronavirus, SARS-CoV-2, or subsequentCOVID-19 illness. I have posted a new link in the group about Covid-19 and RA. Historical image of methotrexate pills. 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 . My walking buddy developed a really nasty lung infection round the same time as me. There are 2 levels of higher risk: high risk (clinically extremely vulnerable) The culture here is quite "do what your rheum says". I would not come off. Now that all that is out, the info. Dermatology departments need to identify those patients for whom, due to their disease and treatment, Covid-19 poses a higher risk. Sadly that doesn’t make it an underlying condition . I feel so much better in my self now. I,m going to focus on September, as all being good we'll be going to Cornwall. Not a silly question it’s a really good question and one that is worth considering! Got appointment with consultant next month, if not cancelled, and to discuss options with him. It is YOUR life. I have to stop it the second I get a tickle, and in advance of and post operations. The most I've gone without my meds is 3 weeks as it normally takes that long before I'm symptom free. Do your own reading since there are great reading material on these meds and then discuss it w your Drs. So there would seem to be some evidence for continuing unless you have an actual infection. 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. Where I am we doctors and patients are a partnership, but the patient makes the ultimate choice, under guidance from the rheum. You need to take care of yourself. The objective is to both protect patients from unnecessary health care visits and help preserve capacity in primary care. 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. 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 . 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. We are each very different, and our levels of fragility are very different. Professor John Isaacs (University of Newcastle), Scientific Chair of the EULAR Scientific Committee, added: "The study shows that most patients with rheumatological conditions recover from COVID-19 – independent of the medication they receive. This medicine may cause a serious reaction called tumor lysis syndrome. Good for you for taking your health into your own hands. That is concerning if friends have the virus. When I was on Methotrexate years ago I stopped it once and was fine 2 weeks and then went into a terrible flare up. EULAR President Professor Dr Iain B. McInnes from Glasgow, Scotland, United Kingdom explained: "There is considerable uncertainty about the drug management in the context of rheumatic conditions.". But that's me! You have more faith in your rhemy team than I have! That advice does not include stopping medication. 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 too am on Methotrexate and saw my consultant last week. If coronavirus is active by you, its a valid choice to go off your meds and to allow your immune system to recover. But you need to look at this as an individual. The researchers are now part of a global network of rheumatologists sharing data in an international COVID-19 registry, the Covid-19 Global Rheumatology Alliance. Recent ultrasound scan of hands revealed I’m not active at the moment, but now starting to get stiffness and pain. If you stop your meds you will regret it. You have to decide for yourself. Whether or not they are in a high-risk category, everyone needs to take steps to protect themselves and others from catching or spreading COVID-19. I regret not checking with the experts first as now I’m a bit scared. I came off Methotrexate because of repeated infections. A person’s general health may play a role in their risk for COVID … My daughter inlaw is in army and they are also on standby. Ah that explains it Cherpr it’s not here in the UK. 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. The NHS plan when the virus gets out of control is to take doctors and nurses from other departments and put them on the front line. Prednisone is a glucocorticoid frequently used in rheumatology as a fast-acting anti-inflammatory drug. Everyone’s individual choice... x. 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. 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. No your not alone. Interesting that my rheumatologist or nurse has never discussed this. Presented at: 62nd American Society of Hematology … I Have Ankylosing Spondylitis, Take Remicade, and Got the Pfizer COVID-19 Vaccine — Here’s How I’m Doing “Getting the vaccine was the best choice for my personal circumstances,” says Kristen Schlichting, who acknowledges that the level of COVID-19 risk she is exposed to as an eye surgery nurse certainly influenced her decision to get it sooner rather than later. However it is possible that the risk of developing I no I won’t be. 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. The doctor told me I could try every 6weeks because of side effects. The intake of TNF-alpha inhibitors was associated with a reduced probability of hospitalisation. The study comes out of a new initiative led by Dr Pedro Machado (UCL Queen Square Institute of Neurology and UCL Centre for Rheumatology), the European Register of COVID-19 disease in patients with rheumatic diseases, sponsored by the European League Against Rheumatism (EULAR). 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. My doctor wouldn’t see me because I went off it so I had to find another Doctor and go on it again. 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. This is the immune system being encouraged, not protecting you against anything unfortunately. I am so sorry to tell you this, but yes we are considered in the underlying conditions group. And, yes, follow NRAS advice. COVID-19 Registry The COVID-19 Global Rheumatology Alliance is a registry for health care providers to enter data about rheumatology patients infected by the coronavirus. I asked her if I was at higher risk than anybody else and she did confirm that that is the case. 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.". I had to come off for a week before an op on my drug (not metho). You might find our blog and this article from two people at high risk with Crohn's and Colitis who caught COVID-19 reassuring. YES we count. I have considered it and spoke with my GO who recommended continuing unless I have any Corona type symptoms then come off. They also said my white blood cell count was good so that’s an indication of fighting off infections well. Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked. There’s also some evidence that respiratory infections spread by viruses, like COVID-19, may raise the risk of getting RA. Please ring your RA team before you do anything. NHS and social care organisations use the list to identify vulnerable patients in their local area. I think we are talking at cross purposes. 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. OF course the general advice is to stay on meds. The shielded patient list (SPL) is a record of vulnerable patients thought to be at high risk of complications from COVID-19. I am in Canada and it is recognized that anyone with rheumatoid or another immune suppressing condition is an underlying health condition. Stay calm. Its an individual choice. I would rather put up with the odd stiffness rather than be on the drug, especially now with Corona virus. Team Body Project workouts on YouTube are low impact and only 20 minutes. Coronavirus prevention guidelines apply to everyone. To help guide parents in the decision to send their child with a medical condition back to school, we have categorized various medical conditions as low, moderate and high risk, based on expert consensus opinion. 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. I have been on 20mg of methotrexate for a year, and hydroxychloraquine. 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. What should I avoid while taking methotrexate? 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. Due to the way case information is collected, severe cases are more likely to be reported to the database, therefore artificially increasing the rate of hospitalisation and death in the group of reported patients. All the medication is immunosuppressive and rheumy specifically told me that I am highly vulnerable . Hi. eating..I now wonder should I go off treatment? The advice of rheumatology experts is not to come off your medications unless you believe you are affected. I know it's a worrying time, I'm nervous at the moment of going to working mixing with different people ect. All you can do for the moment is keep your hands and childrens hands clean and gry to keep your distance and stay safe. 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? I'm just confused. I've not been to the gym this week and I'm starting to feel aches in my joints. But what I have been saying is that it is very individual. Although the elderly and immunocompromised patients are considered to be at greatest risk for complications, there is no data to know what that risk is and whether it is primarily related to disease activity and cu… 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. Would discuss with rheumy. Surely your methotrexate is responsible for the improvement of your health? hopefully where you are you will get the correct info to keep you safe. 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. Talk to your doctor about supporting this effort to help clinicians evaluate risks, assess and treat patients. Om on the same dose as you. Even a regular flu doesn’t go away for 3 weeks . I just wouldn't stop for more than that. Having a weak immune system may put you at a higher risk of serious illness from COVID-19 (coronavirus). I contacted my Rheumatology advice line and they said carry on working, observe the usual hygiene practices and continue with all meds (including Etanercept). I will see if I can find the link and post it! Take care x. 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