Hi everyone. I have a dilemma and I would like to know your views. I know you will have different views but I am hoping to get a consensus. Here goes. I was due my regular blood tests three weeks ago. I cancelled because of my fear of catching covid 19. I spoke to the rheumy nurse who,of course, tried to convince me to go but I wouldn't. She said she would give me another four weeks. My appointment is a week on Thursday 28th May. At this moment in time I am not going. Just to fill you in on important points. I have had RA for 18 years. I now take only 17.5 mg of Methotrexate. I have been in 'remission' for a few years now. I still have flares but not taking me out of 'remission.' I have not had any problems with my tests for several years. I also have a lung condition and I have been shielding properly for 9 weeks so far. I know that all the safety procedures will be in place and I have gloves and mask. I know other people who have been and they were happy with the set up. I don't go to the hospital. Our Rheumatology clinic is far away from the hospital. I know it is important to have blood tests but I still think my risk of catching covid is greater than there being a problem with my blood. I would value your opinions. Should I stay or should I go? Thank you for listening. x
Dilemma: Hi everyone. I have a dilemma and I would like... - NRAS
Dilemma
I know how you feel. I did eventually go and have my bloods done as finally decided that the damage that could happen due to drugs im on was worth the risk. Only one patuent in building and full ppe. My results have been stable for a while. Im on nsaids and dmards. Only you can decide but I researched and decided to do it.
🌈
Call the clinic and tell them of your fears .would you be happier getting your bloods done at the local gp instead and then they can send your results to rheumatology.
If your in remission this could be possible for the gp to take over your care.
For safety though it is important to get your bloods checked but some clinics are now making this 3 monthly af the moment , ask rheumatology or gp if this could be possible.
I had my bloods and drip last month and am going again on thursday , yep I'm shielding 9 weeks too but if I dont get my treatment I just feel my ra will decline and flaring is bad too . But I can drive there, go in a side door, they give you a mask and lots of hand washing areas . Staff have PPE so I felt less vulnerable than I thought.
It's a dilemma and you can only do what you feel is right for you. Call the rheumies again. I know this doesnt give you answers but just some thoughts x
Thank you for your comments. I would definitely not go to my GP. Too many other things in the mix there. I didn't say that it will be 4 months next week since my last tests. x
Well then they will need your liver results as they wont want to give you the meds without knowing them . The good points are, there is less infections each day .
I drove , wore a mask and took hand gel. Out hospital has corridors with no virus or suspected patients going down them, there were no visitors so I dudnt pass anyone . The staff were well sorted, they are professionals at all sorts of infection control.
I took of my top coat etc in the car and opened the windows on the way home as I drive through fields. Stripped off outside house , washed bottom if shoes and waterproof coat with a hosepipe lol. Handgelled , Then put my clothes straight in washer , then straight in shower.
I think it may be a bit longer befire it's under control and our treatment is important so we dont get RA complications.
But only you can decide xxx thinking of you x
I’m just starting out the road so it is different for me. I need to be monitored. That said, I have asked to have mine done at my GP’s in the future. They have a sealed building that is much more local and small and only emergencies that must have face to face are going in in a very controlled manner. IMO if they want us to go to the usual ‘blood test’ dept at the hosp then I would be arguing against that. Too many people in and out with all sorts of issues for me. They did my bloods in the rheumy stand alone building when I went on Thursday. The bore is having to change clothes after you’ve been 
I changed mine and ‘cleaned’ myself down before I got back in the car. Not easy.
I had already decided I would wear 2 sets of clothes and shoes if I decided to go. I will strip off one layer on the car park and change shoes, sit on polyethylene then straight in shower when I get home but ..........
My hospital was 1 in and 1 out in rheumatology , no normal appointments or visitors so it was spooky empty !
I would just go and get it over with. This virus isn’t going away any time soon and I would get it done whilst there’s still strict precautions being taken. Do what you need to do to make yourself feel safer. I had mine done last week and I was the only person waiting, the nurse had full protection and I wore a mask and there was plenty of hand gel. Over and done with very quickly.
My OH is shielding and going for 3 monthly bloods next week, confident that all necessary steps will be taken and good hand washing ++ for him. His first trip out😁
Thank you. I think that is part of the problem. I have become institutionalised. I don't even want to get in the car. Totally paranoid. x
I think it's very understandable that you feel anxious. (The shielding letter is a scary read). Life shrinks when you have to stay indoors for so long, so expanding it again takes time, and accepting some anxiety as natural.
I think if I'm being honest a lot of people, me included, feel a bit like that after being stuck in for so long. I was told no bloods - no methotrexate! I'm getting bloods done monthly and it's been ok - only me in the building - 1 receptionist behind glass and one nurse all wearing PPE. I've been ok so far and I'm due in again this Thursday. M x
Thanks Kitty. That's a good point. I know I will have to go sometime. It might be a very long time before this virus goes away. x
Sheila could you ring GPs & ask what precautions they have in place? I’m due next one at mine as local hospital closed: they were v reassuring, let you in small room at back, you’re only one in there etc. I’m shielding & last one made me anxious so sympathise but was worried drugs might be stopped without regular blood tests. Good luck x
Thanks Kerensa. Yes I was told that GP might not prescribe without blood tests. I don't think I will ever be happy about going but still concerned about the R rate. I am sure that it will rise in the next week after the relaxing of lockdown last Sunday. It was like opening the floodgates. So many people not doing what they should. x
I keep thinking the same Sheila, no one seems to be bothered about social distancing here either: it is a worry. x
Sheila I think you have to remember that what is said in the news is not the general picture. They’re always going to report on the worst behaviours. People all doing as they’re asked isn’t interesting news. There’s not hoards of people everywhere invading peoples space. I thought the same as you and thought this week would be horrendous but it’s not. Of course there’s always covidiots about but you will be in a car so can r̶u̶n̶ ̶t̶h̶e̶m̶ ̶o̶v̶e̶r̶ avoid them.
I can't advise what to do but I have attended my fortnightly blood tests throughout covid 19 at my GP surgery. I am on max dose of methotrexate and am just as concerned about the effect of MTX on my liver as I am about covid. Full PPE and social distancing was in place at my surgery and I wore a mask. I felt totally ok about it. I'm now moving to monthly bloods and will definitely go. As always, only you can decide what's right for you.
It sounds as if you are developing fear of the outside world and that is affecting how you are working out the balance of risks. If you don't go for the blood test, you will have to be taken off what is, for you, a successful treatment. Remember what it was like before you went on treatment? Do you want to risk that?
I've just been for my blood test and felt very reassured by all the precautions that were taken. I wore my mask too, although that probably only reduces the risk of other people catching things from me, but I feel it's important to signal to people that it's OK to wear a mask (and that if they wear one it will protect me from them) - and the staff in the surgery where I have my bloods done were all wearing them anyway.
Thank you oldtimer. Wow! You are right about being scared of the outside world. I have a history of agoraphobia and just said to my husband that another month of lockdown might be a step too far for me. I definitely don't want to go back there again nor do I want to be without my meds. I think I will have to pluck up the courage and venture out. Px
Of little help to you, but I've had a routine bloods form here for a number of weeks. I probably should have had a test when I first had the form but, paranoid or not, decided not to risk it. I was told by a rheumy nurse that I would not be prescribed anymore baricitinib until I had the test. I'm approaching prescription renewal time so recently phoned rheumy again to see what I should do. The nurse this time said because I am in the shielded group then it is best that I don't go for a blood test as things are. I also phoned my GP surgery to find out what the situation is for people in the shielded group to be told that I'm not to go there. All I can do now is the usual practice of phoning the rheumy sec when I'm down to two weeks supply of baricitinib and see what she has to say.
Oh no! I had just decided I had to go and now this has thrown me. I am amazed that you were advised not to go by a rheumy nurse. x
I've been in remission since 2013, my bloods have been fine apart from a blip in 2012. I'm on three monthly bloods now, mine were due earlier this month. I spoke to someone at my GPs surgery, she talked me through how they would do the test, it did sound very safe, but I said I still didn't want to have them done. She asked the GP who's been assigned to look after Ra patients about it, she phoned back and said he agreed I could go six months in between test. I'm on enbrel and hospital does the prescription, I emailed asking if it was alright to go six months, reply was yes, your bloods have been fine for years.
I live in Northampton and I didn’t like the set up at the hospital to give blood so they have rang me and said for vunerable people only they are taking blood tests at our social club I will go and see if it’s set up safely hope so
Thank you for your reply x
I'm fortunate in that my blood tests are done at home, by a district nurse. Most of my RA friends have theirs at GP surgery, where they have no contact at all with other patients. If I could get to the hospital I would, as the safety measures they take are exemplary. But of course, it's up to you.
Ok. Thank you x
I was in exactly the same boat, but recently increased my MTX so couldn't put it off for too long. When I did go a couple of weeks ago, the blood clinic was deserted. I literally went straight in. Hope that helps to reassure you! Must admit in your situation I'd be tempted to put it off as long as they'll let you (my rheumatologist was happy to let me go 3 months given everything).
It can be a quandary if you're of a mind that the centre won't have everything covered as far as protection is concerned... but they will. I'm on the same dose MTX as you, diagnosed 12 years, the difference is I have my drug monitoring bloods taken at my GP. I was called before the day of my appointment, just a shielding questionnaire, did I have a temp, dry cough etc & if I had symptoms prior to my appointment to call them. When I arrived at the Surgery everything was as it should be, quarantine off all over the general areas, reception & the lift. Questioned from the vestibule area, a good way from the barrier the nurses asking the questions are behind a table & if ok they sanitise your hands. Sanitise again prior to using screen check-in, & after, then asked to hand sanitise again before exiting the premises. It's the only time I’ve been out of the house in 9 weeks.
I wonder, if your bloods have been ok for several years would they consider you going on to 2 or 3 monthly bloods? I was asked to do this & have decided I will. One thing though, if you refuse/decide not to have your bloods done this next time they may ask you to stop taking/withhold your scripts for MTX.
Thank you. x
What a dilemma. I can imagine how you feel. I think it could become very easy to become frightened to go out.
I was beginning to think that when I went to go for my daily walk last Saturday and for some reason there were more people about than usual in our very quiet road so I turned around and went back home.
I’ve only been out in the car once with my other half since lockdown started when I went to a small M&S food store last week - was very nervous as it was my first time in a shop since lockdown but I wanted to buy flowers for a neighbour - I don’t have to shelter - I just don’t want to go near strangers.
Then yesterday I went to a tiny local garden centre, it’s in a huge glass house, only another couple of people, masked up like us, loads of space, floor marked out shields in place, hand gel and stuff to clean everything.
I’ve got a friend who has to go to our surgery for regular warfarin blood tests and she says the surgery is always deserted as did my neighbour who fell and got a terrible gash on her hand that had to be treated, again, no one there apart from her and full protection being used along with hand gels.
I think I’d do what you were thinking of face mask, rubber gloves, hand gel, change of clothes etc, everything in the washing machine when you come home then shower and wash hair wash. I’m sure it will be one in, one out and the staff will no doubt be as wary of their patients as their patients are of them.
It’s a difficult decision though make but if they won’t give you your next batc of medicines it does sort of narrow down you ur choices doesn’t it. Good luck with it all whatever you decide.
Thank you for your reply. You are right. I do need to go.
Hi, I had my (3 monthly) blood test done last week at a minor injuries health centre, this is where I normally have them. I had to book a timed appointment and when I got there there were only staff (behind a counter and screen). Got my blood completed and no problems. I actually went a week early because I thought I’d go before lockdown was eased and the possibility of more people being about!
Swings and roundabouts.......but you’ll have to have your bloods done at some point.
Thank you. I am on three monthly anyway and they let me go another month so four months is a long time without a test. X
Hello I went for my blood test this morning first one for 3 months.i was nervous but it was fine and having got home I feel confident that I was safe I wore a mask gloves and took gel. I had a shower when I got home I think it's the fear of the unknown but now I'm glad I went.Jane
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