Thank you to all of you who replied to my previous post regarding whether I should be in Group 4 or 6 whilst on MXT and Abatacept (a biologic) for my RA.
I was down as Group 6 with the GP which I questioned as I felt I should be group 4 (as I've had all the Government CEV letters and have therefore been shielding). I was told to contact my hospital consultant. Someone from the hospital rang me back and said those drugs, according to their flow chart, classed me as clinically vulnerable but not CEV and therefore they wouldn't recommend Group 4.
In the meantime I had copied all my Government shielding letters telling me I'm CEV, NHS list stating MXT plus a biologic warranted shielding (and therefore surely CEV) and my abatacept medicine leaflet showing it increases the risk of infections and handed them over to the GP admin team to give them evidence that I should be in Group 4.
Today I got a phone call from the GPs saying that she and the clinical lead had looked over my case and agree that I should be in Group 4 and I'd be called up when they got their last batch of vaccines in (this week's had all been allocated). She said that the CEV list all went on what code you were and because they prescribe my MXT but I get my biologic direct from the hospital that they cannot take that into account and make the code tally to CEV (!!). Also, they could see on the codings that Chapel Allerton Hospital had downgraded by code to 'Moderate' as opposed to CEV on November 6th (the same date I received my Govt letter stating I was CEV!).
It seems it is very subjective which combination of immunosuppressants warrant a CEV coding and also how you are prescribed - it's therefore a bit of a lottery.
However, the lady at GPs phoned me back just over an hour later and said one of today's allocated vaccines couldn't be used on one of the patients and did I want it - so I've had it this afternoon.
I would therefore advise those thinking they are CEV and assuming they are going to get a call for a vaccine imminently to double check with your GP and plead your case if need be.
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n1mble2
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Gosh sorry you’ve been messed around. I’m a Leeds girl but don’t live in the Leeds postcode any more but was offered Chapel Allerton as my Rheumy hospital originally but said I’d stay more local just south of Leeds. Glad you persevered. I did too as I was downgraded last April by a general rheumy nurse who was unhelpful, let’s say! After ten months I turned it round. Glad you’ve done so too as it’s draining for sure dealing with all that, so well done.
It also depends which lists the medical staff are looking at as the risks were re-evaluated once there was enough analysis of real covid cases to show that the risks posed by MTX and biologics were not as high as had been thought.
So don’t expect consistency!
But it’s good that now the first batches have been administered the doctors are being flexible.
I think your age and whether your disease is controlled is also a factor. I’m in 4 because I need steroids regularly due to RA activity.It’s very confusing and you’ve clearly had mixed messages.
Well done.but if digging and perseverance can work.you have to fight for your voice to be heard.crikey enough proof definitely proved you should have it.a biologic lowers your immune system further.hope your arm doesn’t hurt as much as mine after I got my vaccine yesterday
I received shielding letters, have RA and am on metho and now a biologic. I also have asthma and recently told I have suspected interstitial lung disease. I haven't been invited for Covid vaccine and the GP refuses to even discuss this and reception just say wait until you are called. My recently retired former GP tells me I am extremely vulnerable. This is getting me down, I don't want to queue jump but why was I on the shielding list?
Try the nhs coronavirus booking site. It will ask for your nhs number and if have been shielding and recognises this you can book your vaccination at a centre.
Thanks all. I had to speak to my GP yesterday about my meds and asked him about it. He confirmed I was in the priority group and seem surprised I hadn't already had it. Within 30 minutes I received a call from the practice manager and have an appointment at the weekend, HOORAY!
If everyone kicks up a stink it'll be chaotic. I'm shielding, RA, Asthma, Diabetes aged +70. But I wont hassle the surgery. I think we have to trust the system and wait. Otherwise its all for themselves.
No one is ‘kicking up a stink’ if they’ve been wrongly categorised (as my GP confirmed) and are sufficiently vulnerable to need the vaccine now. There’s a big difference between getting a vaccine now and getting it in June with Group 6. If you’re 70+ you’re due your vaccine imminently anyway so you don’t need to question it and maybe it’s easy for you to shield to keep safe.
It's nigh on impossible for me to shield as much as I’d like as I have a toddler, 2 teenagers in exam years and a husband who’s a key worker who has to go out to work.
Therefore if I have to ask a question my GP to get the vaccine when I should be getting it that’s totally reasonable in my opinion. She even thanked me for bringing it to her attention as she said the codes weren’t foolproof and people were slipping through the net.
Similar. I had a telephone consultation on Tuesday with rheumatologist he asked if I had had my vaccine. Told me to check with gp. They had me as cat -6 not 4. A post on here said if you go to covid booking nhs . Enter your nhs number it will let you know if your eligible . I was and booked my vaccine for this Saturday and the 2nd jab.
I was originally told by GP no medical reason for me to shield in the first lockdown.
I am taking methotrexate and benepali
I also have asthma and bronchietasis too.
Rheumatology unit said I needed to shield different advice fro GP.
To cut a long story short I was called in mid May from GP saying I should be shielding as I have asthma. So since then have received letters from government.
This week called to book his vaccine as he is over 70. I asked about mine but said I need to wait for the over 60s call. Explained I was CEV and received letters from government to shield. But continued to say no. Said government had given the go ahead yet. Spoke with manager who also said no. Not 24 hours later they call again to book mine as I’m on the CEV register. I feel they made an error again.
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