COVID-19 vaccine : Hi, just wondering if anyone on... - LUPUS UK

LUPUS UK

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COVID-19 vaccine

elizabeth-57 profile image

Hi, just wondering if anyone on here is age between 60-65 and only on hydroxychloroqine medication and been offered their vaccine yet. I’m 63 and only on hydroxychloroqine and haven’t been contacted yet so not sure if we are classed as vulnerable. I’m getting rather anxious now and not sure what to do. Also I’ve not been seen at the hospital now for over a year and not had a blood test since January 2020. Not sure if I should contact them now or just wait to be sent for.

Sorry for the rant, just in a bit of confusion over it all.

17 Replies

Hello, i hope you're well- have a read on this link -lupusuk.org.uk/covid19-vacc... i found it really helpful it has listed the priority list and if you scroll a bit further down it explains about people on immunosupressents however it does say hydroxychloroqine isnt included in this but have a read, i hope it helps.

xx

Thank you. Will have a read and also let you know if I get a call or letter inviting me for the vaccine.

Hi Elizabeth I’m 44 and I have been the same and haven’t heard from rheumy or had bloods checked since 2019, we seem to have been forgotten sadly but you should be hearing anytime now as I got a message the weekend for my vaccine but can’t have it until I have finished a coarse of antibiotics plus they are now starting the over 65’s so maybe contact your gp if not to find out when u will be notified good luck x

Hi I’m 62 with SLE diagnosed over 10 years ago. Not on any medication ( my choice) my Gp rang last week to book my vaccination in but already had it through work.

Hi Elizabeth I had mine last Tuesday I'm 67

Hi Elizabeth, I am 60 and have SLE and Raynaud's and on Hydroxycloroquine I was contacted yesterday and having the vaccine tomorrow so l am sure they will contact you in the next couple of weeks. I also have not seen anyone in over a year as the appointments keep getting cancelled even last week l was supposed to have a telephone consultation with them and that got cancelled too.

Thank you for that, sounds hopeful. Will let you know when I get the call to go for my vaccine.

Hi Elizabeth-57. Read your post very early morning.

When post came later, letter came inviting me to get my COVID vaccination next month. I’m 53,as well as a lupus sufferer I have coeliac disease. Like you I take hydroxychloroqine.

I live in Wales by the way. Hope you get your invitation soon! 😊

Hi Elizabeth - 57, I am also 63 and haven't received a letter or phone call. I have SLE, Sjogrens, Raynauds and GP said Vasculitis too. The latter not yet confirmed by a consultant. I am also on hydroxychloroquine, low dose steroids and was on methotrexate but I stopped taking it as I unfortunately didn't tolerate it well. In addition I am asthmatic. I also wonder if I have been forgotten! Please let me know if you get a letter/phone call. I am going to be patient and wait 2-3 weeks to see if I hear anything. My GP actually rang me last spring asking me to go for a blood test but I haven't had one since. Take care.

Yes I understand where you are coming from. It’s just that I know a couple of people not with lupus but one is apparently asthmatic and the other has a TIA (mini stroke) before Christmas. They are both in their 50’s and has got their invites to go, so I don’t know how it works. It’s rather frustrating. My husband is asthmatic and is the same age as me and he hasn’t got an invite yet either. I think I’m going to ring the hospital where I usually attend to see if they know what category we fall into, but I’ll wait a couple more days.

Will only be too pleased to let you know if I get an invite asking me to go for a vaccine. You too take care.

Thank you to everyone for your comments on here, much appreciated and helpful too. Take care everyone.

Hi Elizabeth I am 50 have SLE, Sjogrens, hypertension and am on daily low does steroids. I’m not in the extremely vulnerable group, but am worried. I found out when I had my flu jab, that I was put in wrong group (group 9-everyone with lupus is group 4 or 6). It took some time to resolve this with my GP who agreed it was wrong. I am now in group 6, but haven’t had a letter yet. I am worried as COVID kills by causing the immune system to attack the body in a similar way to lupus. It is frustrating when I hear my partner with no health conditions can get one as he’s a counsellor, even though he isn’t doing face to face sessions! It seems a bit random. I would recommend checking when anyone has a hospital appointment as my brother got missed and he got his this way- there and then.

Thank you, will chase the hospital up then

Hi I am 66 and had my 1st vaccine today I am on hydroxy and microphenolate ,I think you might hear something soon because the next group they are vaccinating are 60 to 65, but if you are worried ring your doctor that’s what they are there for to help you take care and rant as much as you want .

Thank you, your reply is much appreciated. I’ll let you know how I get on.

Hi Elizabeth,Until August 2020 I was taking immunosuppressive meds mycophenolate as well as hydroxychloroquine and classed as vulnerable. My consultant had been reducing the dose of the mmf over time and suggested I stop it completely. Since then I’ve just been taking hcq and not considered vulnerable. I’m 66 and had my AstraZeneca jab last week with no problem at all. Looking forward to the next one!

Hope this helps.

Knitsandie

Thank you for this information, I’ve contacted my drs and on their records I’m in group 7, basically she can’t understand why because by her reckoning I should be in group 6 or even 4 (not that I thought I would be in 4). She couldn’t understand why the system wasn’t picking this up and has sent a task to try to sort it.

Take care x

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