Hello, I've just had a phone call today 27th April from the doctors to go into lockdown for 12 weeks because I take methotrexate, has anyone else had this? I did call the hospital 4 weeks ago and I was told to social distance.
Hello, I've just had a phone call today 27th April from the doctors to go into lockdown for 12 weeks because I take methotrexate, has anyone else had this? I did call the hospital 4 weeks ago and I was told to social distance.
In my case not specifically.
However got a flare which needed steroid injection then needed follow up 4 week oral steroid.
In discussion with nurse & doctor both these aspects put me in the vulnerable group.
So wonder if you've other aspects that contribute as to why they'd like you to isolate?
No harm if you have it contacting the RA dept advice line and discuss?
I've had letters from both my rheumy clinic and GP telling me to isolate and I'm also on Methotrexate. I was a bit surprised and when I queried it with a rheumy nurse he admitted that they'd decided to err on the side of caution and tell everyone to isolate regardless of medications.
Personally I think that it's a bit OTT for me. I'm working from home anyway and there's only my husband here with me but I'm just practising social distancing so still going out for walks and popping into small local shops. Obviously that's my choice but for me personally it feels better than the detrimental mental effects of complete isolation.
It all appears to be rather random. Do you have any other co-mobidities? On any other meds? Just looked at the updated 24th April (I think) information on the BRS website - all a bit contraditory and confusing. May just be a very cautious GP. Others on this site have also wondered why they have recieved letters. I think you might be able to back date your lockdown. Who knows??
Hi it is really confusing this and goes to show the charts mean nothing, many getting sheilded letters etc when chart says no i thought you would be social distances as well, it does put you in a dilemma, would not recommend anything for you just incase, the sheilding does mean they think if you catch it you are high risk to be admitted to hospital, it is conflicting though unless you have other health issiues
I have just received a letter from the hospital which tells me I should be "Strict social distancing" and that means no shopping trips or going out as I am more at risk then people social distancing. I am still going out for a walk as my joints are really hurting now and I need to exercise. I am only on Tocilizumab
My conclusion is that this system is a mess!!
Assess your own risk using all the information provided and do what you think is right for you.
I am on MTX and a biologic, under 70, with no other significant comorbidities and in good general health so I am just being sensible about social distancing and reducing any trips out to the minimum. Anything more would drive me nuts.
It’s more than a mess it’s a disgrace.
I would reckon at least 75% are deciding for themselves what they want to do,& of the other 25% ...who knows if they are in the right category......they certainly don’t....because Rheumy says A, Rheumy nurse says B & most GP’s say nothing.
Even looking at all the published advice tables doesn’t help as few agree with each other!
I'm sorry, I've given the wrong impression. We are very lucky in that four of our children have offered to shop for us, we can get supplies delivered by a company that used to supply the restaurant business and being retired we haven't an issue with money. I would hate to take help from those who really need it. Just having a grump that some, who may need help, are slipping through the net
I'm afraid from reading others posts it sounds like total confusion as to who is what, shielding, isolating, social distancing, letters no letters, letters from who where and when? GP's, Consultants, government, councils? Charts saying different things? I have no letters no calls and have decided for myself given my body and state of health....one body one shot at life....I'm shielding at that's that. I think by now it's rather sad to hear that you have only just received this letter and think it's up to each person and you have to be guided by your own set of circumstances as to what to do, do take good care and sending my best wishes to you x
I got the shielding letter from my GP today, she said the hospital should have sent it weeks ago. Looking at the charts I guessed that I needed to shield so started 5 weeks ago. The letter says separate beds but hubby and I are still sharing our bed....we don't have a spare room. Hubby isn't in the shielding group but apart from walking the dog each day when it's quiet, he stays home to protect me. Our daughter who is a zoo keeper is still working so spends all of her time at home upstairs to avoid sharing any germs with me. What a strange kind of existence we have come to!!
I have recently started crocheting button bands for face masks and uniform bags for my sister in law who's a midwife, and her colleagues, it's lovely to feel like I can do something useful to help protect some one else while I sit this out.
I absolutely agree that the system for notifying people to shield is chaotic, but these are unprecedented time and I guess the administrator are doing their best to work stuff out.
Hello, that's what she went through with me today, separate beds, my own cutlery and towels etc, my husband is a key worked but working from home, the only thing he does is walk our dogs.
Well done on your crocheting that your doing, it's nice to feel like your doing something isnt it.
Keep yourself safe x
Hello - I am on a biologic and Leflunomide and received no letter no call. I decided to call my rheumy last week and even the receptionist wasn’t sure - she said just to social distance and look at the NHS website.
I only venture out for shopping as you can’t get a slot for love nor money. Managed to get a click and connect for this week but it is all a hassle to be honest. Very difficult to social distance in a supermarket when all around don’t give a sausage.
I can only do my best as not worth the stressing.
Stay safe, stay well. Hessie ☺️
I’m just bemused how supposedly professional clinicians haven’t got together...discussed the situation & reached a mutual decision that can be published under their joint auspices!
I suppose because they all think they are right......& to heck with the fact that all their patients are still waiting & wondering!
I think Australia has handled the virus better than the U.K. and you have had far fewer deaths as a result compared with the U.K. so you will have a less feeling of panic than us. With over 21,000 deaths here there is understandable concern with our greater population than yours. If only the U.K. had quarantined people arriving from abroad, especially China . Instead over 190,000 were allowed in without any quarantine.
I notified my Gp surgery last Wednesday that I had started Oluminant and Friday I had my first text to Shield. Monday I had the letter. But on talking to RA team at clinic at start of month she said I had to be careful, not shop etc but exercise. So I still go to allotment in car. Husband shops once a week. We have a small flat, one bedroom small kitchen and bathroom. We can't live separately. So are just careful and he wears gloves out shopping etc. We live by the sea so not a built up area else we would have to think differently. I am furloughed BTW.
I am on Mtx only and have received a shielding letter from my gp last week. It said to shield for 12 weeks from the date on the letter but it wasn't dated so I am going from beginning of march. I think drs look at all your history not just your meds. I have had many infections which usually take more than one course of antibiotics to get rid off. The last infection was Feb and I had 4 courses of antibiotics. Shielding is a complicated subject I think. Hope you all stay safe xx
Hi! I am in complete confusion! I am on methotrexate but also have high BP and on ramipril. I had a phone call from my GP and told to shield followed by the shielding letter 30.3.20. I had been advised to register on the gov.uk site which at that point I then did. However I then had a call from the GP last week and told that the advice had changed and I no longer needed to shield but strict social distancing. However a colleague in the same position queried with her GP and told she still needed to shield! To make matters worse, I then received a letter from GP as they had received a query from the gov after I registered on the database effectively telling me off for registering! They had told me too! On the one hand I’m relieved not to shield as it was hideous, but now I’m also worried........
I’m on 20 mg methotrexate, bisoprolol for heart condition, cocodomol,simvastatin- no letter, gov website just states as only on 1 DMARD and nothing else on list I should only socially distance, yet I know others who have been told to shield for 12 weeks , I’m under impression it’s down to your gp/consultants view on it ??
Check out the British Society for Rheumatology website. It looks like they have been working with NHS to pinpoint the differing levels of patient type within our community..... those who it is felt need shielding are being/have been written to or phoned.
The BSR site has all the info including the template letter being sent to those of us, whom it is felt,need shielding.
Meanwhile, my knees are seizing up as I just cant get enough movement in plus I ve laid off my MTX due to being frightened at weakening my immune.
Roll on the easedown...
I’m no expert but I’m concerned about stopping taking Methotrexate. I did the same for the very reason you said but went back on after talking to nurse, pharmacist (who was very helpful) and reading up. In short I gather inflammation can make things far worse if you get the virus. It seems we’re damned if we do and damned if we don’t! Might be an idea to discuss with Dr. or rheumatologist if you can.
Do you think?
Its hard to know what to do. In my naive mind, i thought if my knee is flaring it might mean my immune is active. Its a hard choice. I ve had no coldsores, sore throats since i stopped the mtx. I know i ll have to start on them though to sort the pain out. I might start back on a lower dose.
I received a letter within my methotrexate medication bag, there was also a note from the gp surgery’s pharmacist in there so not sure if she pushed it on the gp.
My partner goes into shops but I still make sure to exercise everyday and I’m in the lucky position of working from home. Not sure what people are meant to do if this goes on until 2021.
Hi, according to the current regs taking MTX on it's own doesn't warrant the 12 week lockdown, however if you take MTX and a steroid (such as prednisolone) then yes you will have to do the full 12 weeks like I am doing - have a look on the gov.co.uk or versus arthritis websites and these give definitive guides that have been issued
Hi . I have read all your answers and confused.
When all the social distancing started. My husband made contact with his Rheumy team to ask about attending his monthly blood test then due at beginning April. His Rheumy nurse checked with the consultant and stated as bloods where stable could wait 3 months. Yesterday he received a call from the Drs surgery to say as they where the prescribers he had to have the blood test.
He advised them of consultants advice. The receptionist was insistent he attend.
Looks like they never talk as receptionist stated Dr won't speak to Rheumy team to confirm this advise.
Tbh...I don’t think the average GP has any idea how many RA patients are on their List....& they certainly don’t have the knowledge to say what category a patient fits in re shielding / isolating.
Mine certainly don,t know what a lot of RA drugs are and in the past have asked why I take a certain drug ...& when I say RA they just shrug.
The same with me. I have to monitor my own bloods as well as they haven’t a clue what their looking for. Few months ago I had raised white cells and raised neutrophils, I’ve always been on the low side for these for years, their comments were ‘to be expected’ er no! I’m on methotrexate and cimzia You need to watch raised white counts. As it was I had to make appointment as I had a chest infection. I totally have no faith in my gps, they admit they don’t know much about RA and don’t know about cimzia. The last Dr I spoke to because I’ve now had 6 lots of Abs for said chest infection was a condescending p***t! Your life in their hands. They also didn’t notify me of shielding, mine came from consultant and nhs england. My friend’s just rung me her gp sent her a shielding letter straight away 5+ weeks ago and has just sent her another one to cancel it, she now doesn’t have to shield!!
I am the opposite. I should have had a letter weeks ago and didn't get one so I rang my GP two weeks ago who said I should have had a letter and should be shielding because of a lung disease as well as taking methotrexate. I have now received the letter but fortunately I was shielding even before lockdown because I knew I should be. I think we all need to do what we believe is best regardless of whether or not we have received a letter. Always err on the side of caution. The only thing about getting the letter is that you can apply for shopping deliveries which is very useful. x
I’m on mtx and not told to shield. Neither has my niece who is on biologics.
1. Once the restrictions begin to be lifted it will mean that social distancing or isolating for others will be even more important. Atm we’re all supposed to be distancing at the very least but once more family members etc go back to work the risks for those they live with will increase. That’s just one example- there are more.
2. The age at which people are considered more vulnerable varies in different countries. Initially it was 60 and above here in the U.K. but quickly went up to 70 when the gov realised that the state pension age is now 66 (cynical- yes). An article I read from WebMD (from USA) this morning considered those over 60 being most at risk as a given and I have also heard medical experts saying it should be over 50.
I’m 64 and retired so all this just makes it clear that nothing is clear.
I'm on mtx. My rheumy told me shielding wasn't necessary but my GP sent me a letter anyway.
As far as I can make out there have been at least two (and possibly more) rounds of letters, initially from hospital consultants and latterly from GP surgeries being asked to go through their list of patients to identify those who they consider might be vulnerable.
Some seem to have erred on the side of caution and others not so much... hardly surprising when although there are obviously guidelines on making those assessments, they are being constantly updated and the bottom line is that so little is yet known about Covid19 that no one really knows for sure...
I know I was personally shocked (and a little upset) to receive a letter when I wasn't expecting one but I've since come to the conclusion that since there are no 100% guarantees as to if/how any one of us (even including those who are otherwise considered perfectly healthy) may fare if/when we come into contact with the virus, as with so many things in life, ultimately it really is down to us as individuals to make our own assessments as to what may be practical and relevant for us personally and to act accordingly.
I haven't had any phone calls, but I've had 2 separate NHS letters first one was just one that was I presume sent to everyone, telling us if we are on any of the meds listed and have any of the conditions listed, we need to self isolate for 12 weeks, my second letter was from the Rheumatology department telling me more or less the same, but more information about appointments etc...
I'm on Methotrexate, and Simponi (biological)
And apart from R.A. I also have Chronic Kidney Disease Stage 3b and high blood pressure (both caused by my R.A. meds!)
As Methotrexate suppresses your immune system they are probably being extra cautious.
All I’ve had from rheumatology is a rather complicated table thing for self-assessment which basically says if I’m only on methotrexate (hydroxychloroquine doesn’t count) then I’m considered low risk. I’ve had no personal letter, my GP doesn’t seem to know and as I’ve only recently restarted methotrexate (before the lockdown) I’ve needed 3 fortnightly blood tests which I’ve been given home visits for. I do have asthma and have had bad chest infections in the past so I’ve been socially isolating myself anyway. It’s all very confusing and inconsistent it seems with regards who is considered very high risk and who isn’t.
I had the “12 week” letter from my GP. A week later my rheumy consultant rang me to update me re appointments, blood tests, etc. Whilst chatting I told her about the letter and she said that many GPs are being ultra cautious. The criteria for shielding is a points system. Basically, if you’re on steroids you need to shield (2 points). If you’re on MTX you don’t (1 point) except if you are also on biologics. Being over 70 = 1 point. Hope this is of some help.
My husband had a letter from his gp, at the weekend,to say that due to his condition if he caught Covid he is more likely to end in hospital, so he had to self isolate for another 12 weeks, on top of what he had been doing, from the date of the letter. This was after a letter previously from his consultant.
He is on methotrexate 17.5 (I think) plus heart and blood pressure tablets due to having heart surgery 3 years ago.
We are in North Kent if it helps.
Everywhere seems to be different rules tbh. I have not received a letter from Rheumatology or Respiratory teams but did receive one from my GP 4 weeks ago to shield. I had already done this from mid March anyway.
I had my last Rituximab in Nov but started Abatacept injections in March too. I have lung inflammation from RA & many nodules plus Bronchiectasis & also Asthma. I was in hospital in Nov with Pneumonia then again in Dec with severe chest infection so I knew I needed to stay home.
I did contact Rheumatology who said general letters were being sent to all patients but then when I had a phone appointment with them a few weeks ago I was told they had decided against it & had sent text messages instead. I said I never received one but had seen the flow chart used by BRS & gone off that.
I havnt heard from Respiratory team at all & all my appointments including my 3 monthly CT’s have been cancelled.
Even though I’ve had a letter & registered with the government twice i only got recognised for priority food delivery slots last week so have our first one on Friday. I think you need to read the charts ( there are a few variations) & make your own decisions what feels right for you. Personally I’ve found it all really quite stressful & added to an already stressful situation. Take care x
As several people have already said, there seems to be so much contradictory advice about and guidelines have changed quite a lot.
I'm 62, on mtx and a biologic, have high blood pressure ( under control with meds). In mid March I used common senseand decided to social distance. Then as the situation escalated I self isolated. Earlier this month I had a phone call from my GP who asked a lot of questions and concluded that I needed to shield. I then got a letter. Two weeks later I had a phone call- this time from rheumatology, who said the same thing. I am doing as much as I can but can't be completely isolated from my husband at home as we just don't have the space.
I had a rheumatologist letter explaining why they where not running a clinic at the moment and a letter cancelling my next appointment in June. In the letter they told me too follow the governments advice for vulnerable group as I am on 25mg methotrexate.
27th April is a bit late and slow regardless of how many patiences the practice has? Maybe ask why now.
According to the risk calculator I received you are not at increased risk. I've now received 3 different letters telling me to shield. The latest one was on Friday saying to isolate for 12 weeks from receipt of the letter. I will have to retype the form but this is the one my Health Authority are using:
If yes score
Have you had cyclophosphamide tablets and/or infusions in the last 6 months (3)
Have you been taking prednisolene 20mg or more daily for more than 4 weeks? (3)
Do you regularly take prednisolene 5mg or more daily? OR
have you needed extra steroid treatment for a flare in the last 3 months? (2)
Do you have any of the following problems: diabetes, lung problems, heart disease
high blood pressure?
even if you do not have any of these problems, are you over 70 years old (1)
Are you on just one immune suppression tablet and/or injection (other than
sulfasalazine or hydroxychloroquine?) (1)
Are you on two or more immune suppression tablets and/or injections (other than
sulfasalazine or hydroxychloroquine)? (2)
Ad up the numbers above to make your total
Immunosuppressant medications include: azathioprine, luflunomide, methotrexate, mycophenolate (mycophenolate mofetil or mycophenolic acid), ciclosporin, cyclophosphamide, tacrolimus, sirolimus, rituximab (with the last 12 months): or anti-TNF drugs (etanercept, adalimumab, infiliximab, golimumab, certolizumab); tocilizumab; abatacept; belimumab; anakinra; secukinumab; ixekizumab; ustekinumab; sarilumab; canakinumab/ apremilast, baricintinib, tofacitnim, or any biologic bisiosimilar
A score of 3 or more means you are at high risk of severe illness if you catch coronavirus
A score of 2 means you are at moderate risk
A score of 0 or 1 means you are at low risk
Please excuse any typos as my touch typing is not what it used to be. I hope this is helpful to someone.
Well, read all your comments and it does seem that the left and the right hand are doing different things without consultation.
I take 25mg MTX/ The ONLY letters i have had are to say they advise keep taking the meds and i am classed as Medium Risk. Nothing about shielding, nothing about 12 Weeks isolation. And another re my blood tests which say as i'm stable not to go for 6 months.
i do nomally work from home, i only walk the dog outside of the house when its quiet.
A friend at the weekend asked if i had taken a phone call advising isolation due to MTX, no i haven't... she said i should have.
Based in Staffordshire UK.
So who knows, every rule they have set out seems to have exceptions. Don't do this.... oh but you can if you do that!!!
Hi adailsone. I'm.on kevzara injections and have methotrexate as well. My hospital phoned me to say I wouldn't be getting a letter from the government regarding 12 weeks isolation . Was a bit upset about that but got on with things. A week later I got a letter from the hospital telling me to indeed self isolate for 12 weeks.
I received a letter from my NHS Rheum (PsA) consultant asking me to risk assess against their criteria (drugs primarily). Mtx on its own was moderate risk (therefore said it was a personal decision whether to self-isolate). However, because I was taking a very low dose (5mg) of Prednisolone daily (after I had issues with Naproxen irritating my stomach) the two in combination (25mg Mtx/week) put me into VERY HIGH risk which means full 12 week isolation incl social distancing at home!
Having reviewed the risk myself online several weeks earlier, I had taken a unilateral decision to slowly reduce my Prednisolone - so had just completed my weaning off. Of course, I now have a flare (and apparently a flare increases your risk!) So I discussed with GP and he said the BEST decision I took was to wean off the steroids (in my case); that they don't really know much about C-19 but it does seem that prednisolone and mtx as a combo is extremely high risk. I have gone back to trying Naproxen again with the Mtx - as I haven't used if for a year so fingers crossed I don't get the tummy troubles! Hope that's helpful! .
Hi. I had a letter from RA dept stating that I've got to isolate for 12 weeks starting from the 8th April (date on letter). I'd already been isolating since 17th March (on the advice of my employer). Then a couple of weeks ago, I had a text from my medical centre, stating my blood tests would be every 12 weeks (it kind of ties in with the isolation time frame).
I am shielding and have been for the past five weeks. Gp put me off work (teacher) even before I got govt letter. For me, its the prednisone thats the issues. Been advised not to start the biologic or restart the sulpha, because I'll need weekly blood tests, which means going out. But I'd rather be safe.
Hi white blood cells in range except eosinophils. I expect to stay on it and I have high blood pressure. Methx is an immune suppressant and therefore here in Wales as I am 69 I am considered more vulnerable. However I know someone else in Wales under a different health board who was told by specialists that although on methx she wouldn’t receive a letter. Hope this helps, I know high blood pressure is a danger too and I also have mild asthma
I decided at 80 I didn’t want to take it and my doctor was quite happy about it and hoping I won’t need it. With this health programme I’m so glad I didn’t. Not sure what the Consultant will say when I see her but she gave me a booklet for me to take in. Sorry to hear your lengthy lockdown but I suppose you have to go along with it now. Hope you can cope and be safe.
I had a letter from NHS Hospital Rheum Dept 4 weeks ago to say shield, I was already self isolating due to cough. But then last week I had a letter from my GP to say I did not need to shield , I am at high risk and to do strict social distancing, be a bit more careful. I am on MTX 20mg, no other conditions that count and under 70 years. GP said the thinking has changed on shielding. I think they are just trying to cut down on having to get help to people who are shielding, council food boxes, prescriptions etc. I shall be very careful if I do go out. I have stayed home for over 6 weeks now.
I really can’t see what all the confusion is all about, if you are on Methotrexate you are classified as being vulnerable, MTX is a immunosuppression listed on the Gov web site, if you take this you should really know what it does, it lowers your ability to fight off infections/ viruses because it lowers your immune system, because like other illnesses you have a over reactive immune system, anyone who says it’s OTT to put us on the at risk list is a fool, MTX works for illnesses like RA and other illnesses . I’ve been on it for 20 years in conjunction with now a biological medication, the only problem I’ve ever had taking MTX is fighting off the flu, but there are ways if you take it regularly that it’s possible to have a holiday from MTX for a week to allow your body to fight the flu off, I’ve done this on more than one occasion, so you need to register on the Gov vulnerable list ticking the box that says are you taking any immunosuppression medication and also tick the box that asks have you had a letter from your Dr or Hospital, if you haven’t had a letter from your Dr get on to them because they need to get the ball rolling for shopping slots etc, if you’re taking MTX and not self isolating good luck to you because if you get the virus you’re going to need it.........................................I’ve read people on here applauding other countries like Australia and New Zealand quite rightly they’ve done well but please don’t compare them to the UK, they are much bigger countries in size and so much smaller in populations, UK 67M, Aus 25M and NZ 4.8M so we have countries much larger in size than the UK with a much smaller population, you don’t need to be Hein Stein to work out which is the most difficult to protect...........but even without any medical qualification I must stress if you are taking Methotrexate it will make you vulnerable to be able to fight the virus, don’t take risks stick to the guidelines, god bless.
My doctor rang me 2 weeks ago and said they had been in a meeting poring over the clients who had underlying issues. I was one of them. The Practice has decided that it’s better for us to shield rather than just operate social distancing. I personally agree with what my doctor says - after all, the disease is taking those with underlying issues and also those who are healthy.
Better to be safe than sorry, I say.
Just newly discussed this with my GP. He has said that the shielding letters are incorrect for people on mtx. Should only be when a person is on mtx and another type of medication. It's just so very confusing and changeable at present. I'm not convinced with the medication flow chart. I feel that one either has an auto immune disorder or not and can not be put in the same risk category as a healthy person with out an auto immune disorder. Especially when the affected person is working for health and social care. It just doesn't appear to make sense.
Keep safe everyone.
I’m on methotrexate, sulfasalazine, & hydroxychloroquine Didn’t get a letter until last week. It was dated 27th March and the stamp date on the envelope was 15th April. If I’m classed as vulnerable then I’m sorry I think I was more vulnerable at the end of March before everyone had locked down completely so should have been sent out straight away. I’ve been social distancing all this time and will carry on doing just that and not totally shielding as I’ve already been out shopping etc for the last four weeks as I live on my own & could not book a delivery slot from any of the supermarkets for love or money