What Covid vaccination Group are you in? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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What Covid vaccination Group are you in?

llamehtdos profile image
6 Replies

I have MCTD (RA, Scleroderma, Raynauds & ? Lupus). I take no medication at present (was on plaquenil) and was going to discuss with my rheumatologist the possibility of starting Methotrexate following results of heart scan & lung tests -these I have had. Unfortunately, my appointment was cancelled last year and I have heard nothing. When I was making an appointment with GP I asked what vaccination group I was in. The surgery said group 8, I had assumed I would be in group 6. The reasoning was that I am not on any medication at the moment. I have been quite ill with a flare up recently and am pushing for something? because I am extremely short of breath climbing stairs and laying on my back. I'm tired all the time. Is my surgery correct putting me in group 8?

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llamehtdos
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6 Replies

I’d say no they aren’t correct. They should have you down as at risk in group 5 or 6 at the least.

The problem is, as I learnt re flu vaccine in 2019, that people like us with rare conditions (I have similar combo to you) aren’t actually coded as people with common conditions such as cancer, asthma or diabetes are. We slip through the net and GPs should therefore be extra vigilant for us. Your GP should have put you down as pending immunesuppression as mine did in 2019.

I don’t know what you can do apart from contact your rheumatolgy team urgently and report the breathlessness because we are at heightened risk of pulmonary arterial hypertension. This is urgent I would say so please do contact your rheumatolgy clinic ASAP - your GP practice is clearly not up to helping you. I’m not sure if having the vaccine during a flare up is a good idea but again you should consult rheumatolgy about this as they can hopefully advise your GP practice on your behalf too.

I had my first vaccine 2 weeks ago and I was flaring a bit and on mycophenolate so in group 4. I had no side effects apart from continuation of flare and a sore arm for a few days. Good luck in being proactive and I really hope you feel better soon. X

llamehtdos profile image
llamehtdos in reply to

Thank you for your reply. I have GP appointment on Friday and you are right I have to be much more proactive, particularly in the current climate. I've had MCTD so long that I just get through each new presentation with mostly self care, (and odd hospital stay) but this time I have new stuff happening and I know I'm at risk of PAH. I believe the practice manager or nurse classified the groups, therefore maybe lack of knowledge. Hopefully the GP will alter code, just wanted to know if I was right before I ask. Also going to ask for referral 🙂

in reply to llamehtdos

You’re definitely right but I wouldn’t assume your GP will correct this unless you’re proactive. I have to steel myself to do it but I’m very proactive even after ten years since initial diagnosis of RA. I’m mostly galvanised by having had some bad acute hospital experiences. So, although I get Iloprost infusions 3 monthly since last year, I’m otherwise determined never to end up back in general hospital wards if I can possibly help it. Certainly not with Covid.

That said I’ve been waiting 15 months for my first echocardiogram amd can’t seem to move that on now what with Covid etc.

Best of luck!

PattyFootpast profile image
PattyFootpast

Hi

I have same as you (RA, limited cutaneous systemic sclerosis, hypothyroid, complex connective tissue (= lupus?), Raynaud’s plus the addition of Sjogren’s 🙄); lots of pain, chronic fatigue etc started methotrexate on Jan 7th 2021 .... no reportable side effects so far .... 6 x 2.5mg tabs every Monday.

It will apparently take about 3 months to affect my various problems 🙄😆 but I am stopping for one week after Covid vaccine this Thursday?

I am classified as group 4 .... clinically extremely vulnerable? And so should you be .... it is NOT acceptable to be in any lesser group!!!!!!!!

See your rheumatologist.... if you get Covid, what do you think your chances will be ?

See your rheumatologist!!!!!

Stay Safe

PatH

Halfwayuphill profile image
Halfwayuphill

I also think you should be in group5 or group 6. I have Undifferentiated Connective Tissue Disease with Scleroderma gut involvement. I have never taken immune suppressants but do take Plaquinil amongst other things. I did receive a letter from the Royal Free telling me to shield last Spring but they did review all patients after they had some evidence/data in the summer on how patients with connective tissue diseases fared if they got Covid. I was then advised I was just vunerable rather than extremely vunerable. I believe I was told to shield originally because of gut involvement. I am in group 5 as I am over 65 and have had my vaccine. I think with your heart and lung problems you definitely should be higher in the priority list and I would push to see your rheumatologist if the scans showed involvement. This is all a bit of a mind field at the moment as so much seems to depend on gp’s. I know of someone who is in her 30’s had gestational diabetes when pregnant, is on levothyroxine now but nothing else and has been told to shield and has had her vaccine! I’ve included the advice on the SRUK website as it has a useful chart:

sruk.co.uk/find-support/cor...

Hope you get some help with this soon

Sanmateogirl107 profile image
Sanmateogirl107

call them back and make noise ask for help. once you do the love you receive is amazing and the help. do not take no for an answer love julie

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