Not so much of a question rather than an explanation of my situation so please bear with.
I have been self isolating now for two weeks due to methotrexate and baracitinib. My wife has a serious lung condition and also is self isolating tho she hasn’t had a letter yet to indicate that she needs to shield. I am her primary carer so cannot afford to compromise my health despite the risk of spreading it.
My dilemma is that I’m due bloods in four days and I’ve been told in no uncertain terms that if I miss the blood test, I will not be able to continue my meds. That means I will flare which the rheumy team have told me will also be bad for the potential to pick up infections. The bloods are taken in a very busy clinic and there is absolutely no way that I am prepared to expose myself to infection in that setting. No alternatives have been offered and it seems that (and I fully understand the pressure that the nhs is under right now) they are prepared to ‘Chuck people under the bus’.
I am stable with my bloods, the biggest risk being my liver tho a recent test showed ALT >200 which must have been an error as the next test a few days later was completely normal. You would think that they would take a view of treatment instead of sticking rigidly to the NICE guidelines. These are extraordinary times and better management of treatment would save so much time and effort. Ironically, I am 3 weeks away from going to 3 monthly tests. Mexican standoff. I cannot win or choose for the best outcome. Apologies for the long rant but any advice would be greatly appreciated.
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Philjania
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It’s a difficult time . I didn’t here from my clinic nurse for 10 days after I emailed she had C19 now working from home till the 7th April but can’t do all of her work as she can’t access individual records. My husbands best friend is a Hospital manager most clinics closed or less than skeleton staff who on standby. most consultants and doctors redeployed. On top of that they have to send out all these letters. With the best will in the world things cannot run as normal. Once these letters are done maybe the work load will ease them they can think how things can work. There was not enough staff before this even less now. I feel for them damned no matter what they do
Ok I've had essential bloods done,my liver and white cells not good so it is essential for your meds. no one was out and the hospital gave us appointments one at a time so I didnt see others, the normal appointments are cancelled at our clinic.
So you need your meds, stay away from people, trust your nurse to infection control. Hand gel leaving hospital, wipe down steering wheel and foor handle when leaving car. Take off outer layers and leave shoes outside when you get home, ont touch anything shower and change then clean bathroom ...
Well that's what I did, can only think it might help a little. If you flare you will be at risk. ??
Good advise. Have been debating all alternatives myself. I also have dodgy WBC, neutrophils etc. Have considered drive by and stick arm out of car - I should be so lucky. My GP practice doing bloods. Will be following your good ideas. Thanks
Don't worry. Since my consultant said to wash everything that comes into the house, I made my husband do the strip when he had his final day at work. So must practise what I preach. Hands are officically raw! x
I did exactly the same as allanah above for blood test a week ago. Could you wear a mask too? Have you told blood tests clinic you’re both self isolating; mine were lovely, told me to wait in car until 5 mins before, tell reception & wld get me straight in, booked me quiet time, only 3 others, we stayed miles apart, doors open to outside. Btw you & your wife can register on vulnerable govt site whether you’ve received letter or not. It is a worry, good luck x
I saw on the TV the other night a nurse who came out and took bloods masked up and gloves on etc with a trolley and did bloods for a chap in his car in the car park. Now I'm not suggesting that this is the answer but they felt at this particular place it reduced the vulnerblity of this person and others from going into the building. Again could you ring them from in the car park to say you are there and could they notify you when you are due to go in given the risk? I hope there is a solution and send my best wishes to you and your wife.
My bloods due this Friday have been cancelled - but - when I went 2 weeks ago, surgery was 'closed' had to wait to be let in. There was no-one else in there - so if you ring your surgery I'm sure they will be operating on a similar social distancing policy. I do sympathise as my last 3 liver readings have been abnormal so I am concerned my bloods have been cancelled. Good luck in getting sorted.
My bloods were done at my GPs' last week. Only me there, the nurse (masked, gloved and swathed in plastic pinny) came through to the reception area to take my temperature and ask a few questions about any recent health issues. Escorted me to the phlebotomy room and took bloods. As I left another person was waiting to go in. V v cautious
Sorry for late response but I phoned GP practice last week for advice as I usually attend Hospital ‘drop-in’ sessions for bi-monthly blood tests, where the waiting room attendance is variable but I could choose a day and time to suit me. GP receptionist advised that their surgery were no longer offering tests and referred me to a booking clerk at our Health Trust where I was given a specific date and time at the hospital I usually attend.
This arrangement suits me fine as the results should be available in time for my 6-monthly Rheumy appointment in May and, if satisfactory as anticipated, could enable a telephone consultation instead.
Luckily I’ve been in ‘clinical remission’ for quite some time.
You need to contact your care team. I had the same problem and I was told that they’re going to relax the blood test frequency. They checked my last blood test and said it was fine and then said I won’t need to go back until May. Usually it’s every two weeks but you must check your own individual case, don’t go by what I’ve said, just ring them tomorrow.
I am on monthly bloods . I take oral Methotrexate but also bio injection. My surgery text me and said my appointment cancelled until June. I have been told to stay indoors for 12 weeks. Take care
Hi I was in the same predicament and I called the RA nurse who looked at my bloods and said that as I have been stable for quite a while it would be fine to go from monthly blood tests to three monthly. So all sorted out now so pleased to have the helpline to call.
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Anyone had the letter?
New to rheumatoid arthritis area - advice on process for first steps please.
Isolation letter
