Blood TESTS

[jell]

I haven't had a blood test since the beginning of January - when will they start doing them again?

Is it safe not to have them?

[Hidden]

I’ve been having blood tests throughout lockdown: have you been told they’re not doing them by your rheum team? Pre covid I always got them done at the hospital, but whilst in shielding I was told to get them done at the GP. The hospital left the blood forms at the outpatient pharmacy for me to collect and I had them almost every fortnight for the duration. I’m starting again on Tuesday due to a dose increase.

[Jacey15 in reply to Hidden]

Me too

[woodstar1]

I'd call them, I'm still having mine.

[Boxerlady]

I've had mine all the way along too.

[springcross]

I've continued to have mine jell. I would ring the rheumy department and tell them you haven't had any done since January.

[Carolsos]

I have only had 1 set off blood tests. I have mine at the drs. They cancelled the one April and I had one in June and they said I thought they would send me another one. But think I am going to ring them up tomorrow.

[KittyJ]

I’ve had my blood tests throughout lockdown. How often do you usually have them?

[wishbone]

My GP surgery has refused to blood test shielding people througout lockdown . I last had a one around 8 months ago and rheumy recently phoned to say if I did not have a blood test that they've requested since March then they would not prescribe me any more meds. I phoned rheumy to tell them about my GP refusing to give me a blood test and they wrote a letter to him, followed by a phonecall to explain the situation. Shortly after I had a phone call from my GP surgery to arrange an appointement for next thursday.

[ruth_p in reply to wishbone]

I don’t know why but that’s made me really cross! Your GP should be ashamed, I can’t believe they think it’s acceptable to neglect the care of their most vulnerable patients. My GP sent an HCA to my house to do my blood test.

[wishbone in reply to ruth_p]

Can't say that I was very pleased either. The surgery said the same when I phoned a couple of months earlier to find out what precautions they had in place. Rheumy let it go back then and posted my usual 12 week prescription for baricitinib. No chance of that this time and understandably so. If I could drive then I would make the 10 mile round trip to my local hospital, though I wouldn't have even considered it the first time when the virus was more active than it now is. I don't see why I should go to the hospital anyway when my GP surgery is just one mile down the road.

Not that I need to be told, but the surgery said I should wear a mask and wait outside until they call me in, after I've shown my face obviously. Hopefully the nurse will have a mask on, if so it will be straight in and out job and I'll wear a t-shirt to make it easier. No way can I walk there so my daughter will have to take me in her car.

[Hidden in reply to wishbone]

Hello Wishbone,

Things don't seem to go smoothly for you, do they? I've had pretty much the opposite situation. I've had blood tests done at the hospital all along, fortnightly until March, then monthly and now moved to 3-monthly. They suggest having the tests at my GP surgery every so often, but when I tell them I can walk to the hospital in 10 minutes, but it's a 45-minute walk to the GP or else a bus ride that only takes me part way and the possibility of a half-hour wait for a bus to get back, they give in.

From time to time I get a call from the surgery saying I can't have another MTX prescription until I've had a blood test. In fact, I had one this very morning, even though I have explained to my regular GP, the surgery pharmacist and the practice manager, all of whom are fine with it. I also write it in the comment space when I request my MTX prescription online. Despite all this, it is apparently "not in my notes". Having now explained to the receptionist as well, I am hoping it will be recorded in my notes. Sometimes it scares me that we entrust our lives and well-being to a system that can be so inefficient at times. (It doesn't increase my confidence that a friend had the wrong shoulder operated on because somebody did not read her notes, but that's another story!)

[wishbone in reply to Hidden]

A ten minute walk to hospital...think I could manage that!

I've been taking baricitinib for around 2 years and have yet to be told how often I need a blood test or even if I should have one at all. Several months after starting baricitinib I phoned rheumy to ask if my bloods required regular monitoring. The nurses appeared unsure and suggested I go and see my GP. I knew fewer blood tests were needed for baricitinib than methotrexate so asked my GP what he tought about 6 monthly blood tests, which he agreed to. We decided on having full blood counts and to include cholesterol and CRP. I had one test back around last November I think it was, which was fine, so was due another some time in May but my rheumy wanted one earlier when I saw her back in January.

So yes, your situation does seem a little different to mine.

[rab1874]

I still get mine every month at my GPS would give them a call

[helixhelix]

I’ve continued to have them throughout. If your blood tests have been stable then missing a couple of months is not that bad depending on what drugs you are on? But 6 months!

[JEM95]

I’ve been having them all through lockdown. My surgery has slots for vulnerable peeps - early morning or in the evenng - after extra cleaning plus with no one else around. I was every 4 weeks, but now I’m stable on Benepali I’ve gone out to every 3 months (the first time I’ve been stable enough in nearly 8 years 😀).

[Pam-51]

Had my last blood test in February. As I have been shielding I rang rheumatology re the tests which I normally have 3 monthly. Was told I could leave them for 6 months, so now due next week. Have been on Methotrexate for 30 years + so bloods fairly stable. Also have a compromised immune system and on immunotherapy so need these levels checking too. Have blood tests at GPs but still a bit concerned about resuming Rituximab therapy at the hospital.

Best wishes all

Pam

[bienassis in reply to Pam-51]

Interesting about blood tests - which should be a priority. Surprising how many people seem to be having trouble getting them. I am on Methotrexate and Remsima and a District Nurse comes to take my bloods every 8 weeks. I have taken methotrexate for 22 years - and was heartened that you have benefited for 30. My bloods too are fairly stable - I get a bit anaemic from time to time. Now that I'm also having Remsima, I'm not sure how the bloods will be affected - I've just started that drug, and I believe they may affect the platelet levels. But that remains to be seen.

I stopped my infusions of Remsima after 3 doses because of the covid worry, and am about to launch myself on subcut injections at home.

Keep well!

.

[TaffyBando50]

Hello Jell,

I had my blood test last week after a telephone review with my GP.

All blood requests were sent direct to tht hospital.

They take your temperature as you enter.

All procedures in place.

Peterborough hospital are amazing.

I suffer with anxiety aswell as my RA and OA but handled the visit well.

Speak to your doctor Jell good luck, you can also request a nurse at your practice 😀

[Lizard28]

My GP surgery called to say they wanted to check my bloods, they are getting done monthly just now because they said my white blood count on the low side. I was surprised to get the call as I usually get them done at the hospital but this is s much easier. Feel sorry for poor nurse doing them, she wears full ppe gear, she said she steams up with mask and shield on and can’t see her computer screen because of it. Just hope she get my vein first time as I don’t have the best of veins.

[Cactiman]

I’ve been having blood tests every month during lock down at my local hospital. You do have to book on line for a day and time. Have you telephoned your RA department?

[MadBunny]

Ive been having them throughout too.My health authority was sending someone to the house:it was arranged by the gp.As others have suggested, it might be an idea to contact rheumatology/ gp, whoever requests them.Even if they were doing them at longer intervals, 6 months does seem a long time.

[BoneyC]

I've also had blood tests as normal. Our surgery sees vulnerable patients on Mondays and Thursdays. Also had CV risk assessment at one of the appointments.

[Bookworm55]

I have had a bit of hassle with blood tests since the lockdown but eventually managed to get them once the GP surgery didn’t prescribe mtx without telling me! This was despite the Rheum dept telling me that I was ok to wait 3 months between tests as my bloods have always been stable. I face the ‘third degree’ every time I ring to book a test now although I think that is due to the general attitude of the GP practice rather than anything else!

[Stowe]

Yep my blood tests are every 3 months, my Dr said they wouldn't send my medication at the start of June as my blood test was due. I went there start June, my drs were very good with keep me seperate from everyone else. Next one due start of Sept. Lime everyone else i would call your dr's and ask them when your ne t blood test is due, are you meant to be having every month or quarter? Good luck x

[Knit12]

My rheumatologist contacted my gp and arranged for me to have a blood test. Nurse came out wearing full PPE.

Talk to your RA team and ask

[Summerrain14]

I have been having fortnightly blood tests at my GP surgery throughout lockdown. Best to give your team a call. x

[KaysDad]

My GP checks the blood test results and decides whether I need one every month or can wait for 3 months. When needed, they are done at the surgery, with face masks and the nurse in full ppe.

[nomoreheels]

I've continued to have my bloods done, but it is up to me to make my appointments. I have them done at my GP Practice, maybe yours are done on your behalf & you've been waiting for the call? What I do find odd though is that whoever checks your results (GP, Rheumy or someone on behalf of your Rheumy) hasn't queried why there have been none to check. Being on two DMARDs it is still necessary, though some, including myself, have been changed from monthly to 3 monthly bloods, but you should still have been having them whatever the frequency. Do please contact wherever it is you normally have them done. If at your GP Practice then them, if it's hospital then your team, if you have a helpline number, if not call your Rheumy's Secretary.

[LinaM]

I haven’t had any blood tests since February . My GP says rheumy told them I don’t need them till August ( previously was unable to get MTX prescription without a blood test result) Have been told I need to make my own appointment at end August.

Like you, I’m very concerned about taking meds without monitoring.

My rheumy consultation has been cancelled too.

I just want you to know you’re not the only one ! I’m in central Scotland .

[Mandalou]

Hi jell

Just had mine done this morning at GP’s surgery.

When I had my telephone consultation with my consultant at the beginning of the Pandemic he said I could go from 8 weekly to 12 weekly as my bloods are stable and I’m in remission. I’m on Hydroxy and Benepali injections for sero neg RA.

I would get phoning if I were you. Good luck.

Mx

[beeckey]

I have had blood tests done as usual

[Artroc56]

Had phone call from GP made appointment, drove down, i rang when i parked and two nurses in full ppe came out to my car.

[Pulfs]

Been to my GP surgery every month to have bloods done no problems and very safe x

[Leics]

The last bloods I had done was in A&E last October when I had a bad chest infection and was sent by my GP I knew it was a chest infection and I needed antibiotics and to go back home lol but NOOO seven hours on a trolley and I was shipped back home with antibiotics. I shouldn’t complain coz he was looking out for sepsis so understand why I was blue lighted. So no contact from GP except when I begged for help some weeks ago with a massive flare and I phone call gave me some prednisone for a while. I’ve since spoken to rheumy team who’ve also not been in touch but have given me more prednisone for the next 10 weeks to stabilise this awful flare with no end. Apparently they don’t give a monkeys about CRP inflammation levels or any other bloods for that matter still consider it too risky to see me face to face at hospital or GP’s. Biologics nurse rang me today out of the blue coz I’ve not had any Baricitinib for 8 months either and they’ve only just realised (lol) but I was always told that if you’re on Bari you’re supposed to have bloods every three months. Good luck trying to get anyone to do them I’ve got no chance of anyone volunteering anytime soon.

[Midwife1986]

I’ve had mine taken at the times they were due. My health board set up a specialist site for all bloods to be taken from all the GP practices. The dental nurses were re-trained to take the bloods as their jobs were not possible due to dental practices closed.... a brilliant idea.

[NicolaP]

GP Surgery is supposed to do blood tests but the last they did were last August. Had them done at the hospital in mid March when had Rheumy appointment. Rheumy wasn't impressed with them and was going to query it but I don't think she has probably 'cos lockdown started two weeks later. Had telephone consultation earlier in the month and she did say they would get me in to the hospital for bloods but when they phone was told it was to be at one of two remote sites. One not far from hospital but the other in town and there's no way going in there. However, been agreed I'm going to approach GP surgery again as they should be doing them anyway and only 2 miles away. We'll see what happens, any issues and will be emailing the Rheumy nurses. The GP Surgery were really good about monitoring until change of senior partner last year and everything has been changed. Previously one nurse saw all rheumatology patients (under guidance of specialist GP) but last year they changed it to three and I don't think anyone is bothering to keep an eye unless you ring them. I've not see the specialist GP in over a year and had been told had to see him once a year at least. In fairness until lockdown parking there was a nightmare and I can hardly walk 'cos waiting for now delayed TKR surgery so wasn't that bothered but as they're seeing hardly anyone now parking shouldn't currently be an issue. Shall see what happens.

[Hidden]

When I first enquired about having mine done (I usually have them done at the hospital), I was told by the rheumy dept that it would be alright to leave them for three months. I thought that was a bit odd, when in the past, the rheumy has always impressed upon me that I must have them done every month.

I rang my doctor's surgery and was told they would do them for me every month. I said that I was shielding and could a district nurse come out to do them for me. The doctor said she would see what she could do but rang back later to say that the DNs had rejected it. So every month, I have had to ring and make an appointment which is not too hard to get and then go to the surgery to have them done. I am taken in by myself and the nurse is all gowned and masked etc.

It seems everyone has a different tale to tell.

[AndrewT]

I had one today, at the Local Hospital. No Problem at all.

AndrewT