ANYONE BEEN CONTACTED FOR COVID JAB YET?: My GP doesn't... - NRAS

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ANYONE BEEN CONTACTED FOR COVID JAB YET?

muffin
muffin

My GP doesn't consider having RA is a good enough reason to have a flu jab, and has not been allowed since 2017, although I managed to slip through the net and have mine until this year, but after a lot of trouble did get a jab.

My question is, has anyone with RA been given an appointment for covid jab yet? I know this is being rolled out first with people who live and work in homes, which it should be, and age related, but wondered, as I am not considered at risk by my GP, although considered at risk by my newly retired consultant, what the position is with other people with RA?

I know I will get a jab eventually, not expecting anything until about May, but just curious what the situation is elsewhere.

Thanks.

Muffin.

68 Replies

Hi it is very unlikely unless over 80 that is the next batch It is the people who are dying age related first although nhs are getting it with the 80s and over

Then it is 75 to 80 then 70 to 75 who have high death rates

There is lots of deaths in those ages they should be first before anyone

Ra would come into it at no.4 or no.6 or if your over 50 ,for phase 1

I’m not considered more at risk anymore because of RA or the drugs. At the beginning it was considered a possible risk, but no more. So I’ll be getting it in my age bracket.....probably July.

Do you not take a biologic helixhelix anymore

Yes, I’m on Enbrel and MTX.

Buckybri
Buckybri in reply to helixhelix

Well I’m on mtx and imraldi and I have just been told to shield again and also been put on furlough. It makes no sense

helixhelix
helixhelix in reply to Buckybri

Do you have other health conditions perhaps? Or are older? I’m in my early 60’s and in reasonable health so my rheumy is really not worried about me at all!

Buckybri
Buckybri in reply to helixhelix

I’m 50 years of age with no other health conditions, strange

KittyJ
KittyJ in reply to Buckybri

I’ve been told by my rheumy I don’t need to shield Buckybri, Biologic mtx no other conditions, it’s definitely strange.

Buckybri
Buckybri in reply to KittyJ

Yea I had the letter of the Welsh government and had a letter from my place of work telling me that they are putting me on furlough again also my friend who is in his thirties has been furlough to and he’s on mtx and no other meds

Delainey
Delainey in reply to Buckybri

I'm on mtx and benepali and on extremely vulnerable list and just received another letter so can't go to work.

I’m taking benepali and MXT and recently received a letter to shield as in their 4

When I spoke with my GP a few weeks ago she said several months and I guess that if all goes to plan and there are enough doses. I just enquired so somehow I could ground myself and get a sense of perspective, so now will wait in line patiently until I am invited. I had a similar experience in respect of the flu jab at a previous practice I was with, initially they deemed me as needing to have it then decided I wasn't. Although my current practice think I am eligable and have had it for the last five years without a problem, sometimes there is no logic. Take care and keep safe xx

Neonkittie17
Neonkittie17 in reply to Pippy25

Ask your Rheumy Pip, as often some GPs don’t realise which are the higher risk R.A. meds. Some of my GPS don’t know about my own main RA med.

Pippy25
Pippy25 in reply to Neonkittie17

Thanks NK I have a really good rapport with my GP and trust her more than the rhuemy who I don't have a good relationship with whatsoever and doesn't want to see me until 'I am 'feeling better' as was his comments last January. I was in the process of sorting this situation and others out regarding my health when this covid thing started. My GP has been supportive and since moving to the practice 6 years ago has given me the flu jab without question and when she spoke to me the other week she was simply being realistic about time scales of rolling out the covid vaccine in this area and I respect that. xx

Neonkittie17
Neonkittie17 in reply to Pippy25

Glad you do have the rapport with your GP and sorry you don’t with your rheumy. Both mine are fine. My biologics nurse is fab. I have fallen through the net with both the rheumy and GP admin teams and also the odd general nurse who refused to add me to the higher list. I said to him, he would cause me a lot of work and stress .. and he did! Almost ten months of it. 😢😖🤨 Gosh, yes I recall that very strange remark about not seeing you till you are better??!!??!! Wow he can’t be seeing any patients who are unwell then? 😳🤨 xx

If you are considered extremely vulnerable group which will be alongside those over 70 group. This depends upon the medication you are taking. If DMARDS only then you will be further down the list.

Otherwise it's by age and at the moment the 80s and Front line health professionals with care home staff. I'm not sure if carers in the community is included but should be.

I would check with rheumatology and ask them to write it in their next letter that you should be offered flu jab each year.

It's going to take sometime before all the population apart from those who are opting out will be have the vaccine. May even take a year to do.

My GP told me as my immune system was not as strong due to methotrexate I needed the flu shot. Also last year I got a the pneumonia shot.

This is going to be an interesting one as different rheumys/GP's seem to have put us into different risk categories...At 60 and on 3 DMARDS (Methotrexate, Sulfasalazine and Hydroxychloroquine) I would expect to be in one of the later groups. However, both my rheumy and my GP (independently) have put me on the CEV list (incorrectly, in my opinion) so it will be interesting to see when I'm called...

Hidden
Hidden in reply to Boxerlady

Hi Boxerlady, I’m on the same meds as you as have been put in the CEV category, incorrectly in my opinion too. My husband is a doctor and he has suggested that there is evidence ( although very limited numbers researched) that being on a bio could mean less severe Covid symptoms.

Either way can’t wait to get my vaccine.- I was told I’m group 4, however unlikely to mean anytime soon .

🙁

Boxerlady
Boxerlady in reply to Hidden

How are you getting on with your meds? I'm on 25mg Metoject and have just had my Sulfasalazine increased to 5 tablets a day. Side effects aren't too bad although I'm fuzzy headed and have some nausia the day after the Methotrexate.

Hidden
Hidden in reply to Boxerlady

The nausea on MTX can be quite bad so just started a Bio as need to come off MTX.

Really hate all the meds we have to take but I’m so thankful to be pain free.

I’ve was diagnosed 4 years ago, at 47 but I was in denial.

Do you mind me asking how long ago you were diagnosed? Are you pain free?

Boxerlady
Boxerlady in reply to Hidden

Just over 18 months ago at 59; I count myself lucky as I think that I had an initial bout of reactive arthritis nearly 30 years earlier when I would have found it all much harder to deal with and I'm just grateful that these medications are available to us - must be better than the alternative! I'm not completely pain free but it's much better than it was and I'm able to cope without any pain medication - just a bit of stiffness and swelling and twinges rather than actual pain. I'm hoping that the increased Sulfasalazine will produce more improvements but it's only been two weeks. The nausia isn't bad enough for me to ask to try something else but I'm hoping that if things improve further, I might be able to reduce the Methotrexate dose a little as I think that the addition of Sulphasalazine has been the final piece of the puzzle.

Hidden
Hidden in reply to Boxerlady

Glad you are doing ok. And yes you are right we are fortunate that these meds are available to us. This forum is so good to hear other people’s experiences. And know you’re not alone.

Good luck with your meds. 😃

helixhelix
helixhelix in reply to Hidden

This is possibly what your husband was talking about

thelancet.com/journals/lanr...

Hidden
Hidden in reply to helixhelix

Yes, I think you are right.

Thanks Helix helix for your link to the Lancet. It does read as if we who are on biologics are not so vulnerable as first thought but a lot of research on going.Meanwhile keep on with the drugs that are keeping us pain free and active and remember hands, face,space.

Strange isn’t it as I am on Rtx, Mtx and a comorbidity of bronchitis and have had to jump up and down to try get acknowledged by my own rheumy department but think it is a question of admin people wrongly catagorising patients for their registers of higher risk, both at GP and hospital. I was told this by my nurse.

I queried it - rheumy nurse said that they'd decided to class everyone as vulnerable rather than look at individual cases and GP said that it was probably because GP surgeries are "scared" of Methotrexate!

Spin1959
Spin1959 in reply to Boxerlady

Interesting I’m on methotrexate and hydroxychloroquine and over 60 but not had a letter. I also work in a special needs school

Boxerlady
Boxerlady in reply to Spin1959

That's what I was on when this happened - Sulfasalazine was only added fairly recently.As I say, I disagree with it and actually feel quite guilty that others that should be on the list have been left off it.

I'm not sure how it works with retuximab, I had infusions in November. I'll let me rheumatologist guide me.

If you watch the Zoom chat with NRAS and Dr James Galloway, senior rheumy at King’s College Hospital they did a week or so ago (sorry can’t link it for some reason but it will be on NRAS’ main page) he focused first early on in the chat on Rituximab and the question re timing of Rtx and the Covid vaccine was discussed. This included best time/window of opportunity to do the vaccine given that less B cells may not produce enough immune response if the B cells haven’t repopulated. He gave some great advice in general but recognised it isn’t always easy to plan vaccinations around Rtx infusions. I’m going to ask my rheumy her views in about ten days when I speak to her as my clinic review on the phone. My last Rtx infusion was early September.

Thank you for this, I have a phone appt early February with my consultant, it may perhaps be a specialist nurse in reality, so I will discuss then. I'm working out it could well be May-time. Sorry have only just read your response.

It answered a lot of questions and was very helpful. 💗

Trutta
Trutta in reply to Neonkittie17

Here's the link which I eventually found. very helpful. thanks Neonkittie ! I hope this works:facebook.com/nationalrheuma...

No appointment yet but then I’m not expecting to get one anytime soon. I spoke to my rheumy about this at my appointment the other day and she said I’m not considered CEV just higher risk so no shielding just being very careful. I’m under 60, on a biologic, mtx and another lesser dmard with no co-morbidities.

AgedCrone
AgedCrone in reply to KittyJ

I’m the opposite ...hurtling towards 80...but stable & don’t get infections...rheumy quite relaxed about me waiting my turn, but I keep getting CEV letters,& now phone calls telling. how vulnerable I am.....but no sign of any vaccines in my area.I ‘m here when I get the call...but as I have managed to keep safe so far...I’m just enjoying my glass of wine & relaxing!

If we just take care...we will be fine!

KittyJ
KittyJ in reply to AgedCrone

Yep getting letters, emails and texts 🙄 My gp surgery are asking for volunteers to help with vaccination admin/ushering etc for next week so looks like they’re planning to get going.

bubblyalex
bubblyalex in reply to KittyJ

Amazing the differing opinions with some rheumy’s. Being on a biologic adds on top of my other vulnerabilities according to my gp end rheumy. Hence they and others have told me to stay home don’t go out.

Going on to Rxt I am told pushes me even higher up the list ... didn’t think it could get higher 🤔. I am on MXT 15mg Sulfasalazine and Amgevita as well as the asthmas meds that put me on CEV and 30mg pred... and all the pain relief.

Add to that my weight 🙄 The lovely term co-morbidity is over prescribed for me lol ... 🤭

No ...research has found we are not considered high risk unless on high doses of steroids.You can always go to your local pharmacy if you want a flu jab....you don’t need a referral.

Locally those 80+ have received their first Covid 19 vaccination, but are now on hold for their second dose,

The rest of us must be patient & continue with hands,face ,space!

I won’t hear anything for a while I’m sure. My R.A. meds are Rituximab infusions and Mtx injections. I also have bronchitis which is a side effect of Rtx. I have to take abx every third month to ensure it goes. I have been trying since April to be included on the clinically extremely vulnerable register at rheumatology but someone bungled it for me despite them receiving a letter from my respiratory consultant. (Also the guy knew very well my status and was being damn awkward.) My GP practice let me slip through their net and despite my doc knowing all about my issues, it was the admin who did not put me on the higher risk list. I wrote to my GP and phoned and spoke to the practice manager and got included last month, so being on that list should generate a call or most likely a text I’m told, to give me an appointment for the vaccine once a venue is sorted. It just took almost 10 months to get included in the higher risk register at the GP and I’m not on the rheumatology one still!

No disrespect to the GPs at all, but they don’t always know all about the RA meds (mine openly admit this!) and which are higher risk re depleting immunity, so I’d ask your rheumy to let them know your meds and RA status. Some docs know and are excellent but not all do. Take notice of your rheumy on this. Also I had to work hard to get my GP admin team to agree I should have the flu and pneumonia shots for my first time in October. They simply saw under 65 and said no! I then spoke to a GP who said yes! I would also ask your rheumy to confirm to your GP you are to have the flu shot. Ask your rheumy if you are at higher risk. My rheumy nurse said that they recommend all their RA patients to have the flu and pneumonia. Whether on DMARDs or biologics.

The table of higher risk meds and all RA meds and their risk status are on the National Society of Rheumatology’s website and you can see what comorbidities put you in the higher category/CEV and may mean you go sooner for a vaccine. We know all care home staff and residents and frontline workers and elderly go first. Then I would think those who have have major health issues such as transplants/severe respiratory issues. That’s a given. I believe I have to wait till March anyhow for My B cells to replenish after Rtx. I’m speaking soon to my rheumy soon.

I think R.A. patients on higher risk meds and a comorbidity will likely be flagged to have a vaccine sooner. However that sooner may still be a few months away. I would ask your rheumy to write to your GP and let them know your status re meds and at risk. The rheumy usually writes to the doc after your consultation to update them so hopefully it isn’t going to be too much extra work to add another sentence to day that. Hope you get this sorted for the future re the flu vaccine etc.

If it goes to plan which is unlikely No4/No6 groups should be towards the end of spring. Tbh at the current rate is going to be 5yrs to vaccinate the whole population.

For some reason i was put on the High risk list at the beginning of the pandemic. I have RA was diagnosed 20yrs ago. Maybe having Bronchitis 2 years running has put me in the risk category?. Who knows.

I'm on methotrexate weekly injection and definitely have had flu shots, and just the other day Shirinx vaccine (new version, already had older less effective one, produced 1 day of ache and tiredness) and GP and Rheum Doc both approve of all of these vaccines including the Covid-19, as soon as it is available for me.

My Rheumatologist told me to get both the flu and pneumonia jabs ASAP after diagnosis and , a few weeks ago, said that he thought I'd be in group 4. Am on methotrexate, prednisolone and will start hydroxychloroquine this week.

Not yet Muffin, I am 74 inject etanercept and at present I am taking Sulphasalazine and low dose prednisolone. I also have asthma. I believe that I am 4th in line for the jab although I have been instructed to shield, all I can do is await the call like everybody else. I do think though that things will start to move now that the second vaccine is available. I know the government have a lot on their hands but in saying that there seems to be a lot bumbling going on along with back tracking that's why people are so confused about schooling etc. I wish they would realise that the only weapon we have to get on top of this horrible disease is the vaccine and as soon as they channel more effort to getting people vaccinated the better.

Take care, stay safe.

Ray.

😀

If u r on immunosuppressants then u definitely should b in the vulnerable category...which is down the list a bit

I’m not currently on R.A. meds but I’ve just had a depo injection. However I have severe hypoimmunoglobulinaemia which put me at great risk.

I’m included in the CEV category and as most are in tier 4 too. So if I was still working then I wouldn’t be expected to go to work my husband however is a essential worker so he still has to go to work. They’ve decided at his workplace that they’re going to test everyone for Covid on Monday 4th January when they return but they start work at 7,30 am and his test isn’t until about 10 and for the life of me I cannot understand why they are all working together before getting the test results ? Think it’s just a box ticking exercise but bonkers 🤯. It would make more sense if they were tested and if negative can resume work not work for up to four hours and then get a test and be sent home if it’s positive as the entire section would have to go off if one of them was positive. It is a very good idea to test everyone though think more workplaces should do it.

Neonkittie17
Neonkittie17 in reply to Leics

That seems really daft but ..... at least they are testing them. x

Leics
Leics in reply to Neonkittie17

Yeah agreed just think it should have been managed a little better 🤷‍♀️

Neonkittie17
Neonkittie17 in reply to Leics

Would have been better if the tests had been done first thing.

Leics
Leics in reply to Neonkittie17

My thought exactly 😃

Neonkittie17
Neonkittie17 in reply to Leics

Or they start work later but guess the bosses would not want that!

Well I am in the Clinically Extremely Vulnerable category aged 71 still waiting for the call but I think I still have a bit of a wait yet. I think it may also depend how many doses your area is allocated. Think I will wait for the masses to be vaccinated before I dare venture out anyway.

I can't understand how your GP gets away with telling you that you don't need the flu jab. My rheumatologist is very emphatic that her patients must have it. RA would put us at risk if we got flu badly and we might have to pause our RA medication. Maybe you could get your consultant to write to the GP about it.

Yup my rheumy has always said/says she wants all their RA patients to have the flu shot and those who are CEV to get the pneumonia one too. I had both for the first time in October. Definitely the rheumy should let the GP know. The GPs may not be seeing a patient regularly or not recognising fully what their RA meds can do, although they should receive a letter of the consultation you have with your rheumy etc.

Hi I’m recently diagnosed with PsA & taking etoricoxib, hydroxychloroquine, methotrexate & recently gabapentin, I had a telephone conversation with the drs clinician last week who said they’re expecting the Oxford vaccination shortly & I would be classed as priority, I’m 54, also when I was diagnosed & put on methotrexate the drs rang me to insist I go there that afternoon for the flu jab, seems there’s no consistency between gps or rheumatologists

I have had a letter from the NHS/Government, saying I have to wait to hear from my GP. However, I think it is because I have been in shielding, extremely vulnerable group because of respiratory conditions, the reason I will have it sooner rather than later. I am surprise you are having problems with your GP, I would make a complaint to the Practice Manager as I would have thought you would qualify for the flu jab each year at the very least.

Gosh! That's surprising. I have a flu jab and pneumonia jab but I'm on methotrexate x

I’m considered to be in the highest risk category. I have RA & Lupus and am on methotrexate and long term steroids but haven’t heard anything yet about getting the vaccine.

Hi. I had mine a couple of weeks ago. Mainly because I work for the NHS X

It's not RA that entitles you to a flu jab it's the meds we take that qualify us. I usually get mine at the pharmacy as you tick the box saying immunocompromised. Anyone living in your house is entitled to one too. The covid vaccine if you were given a shielding letter you should be group 4 which on the predictor online is Feb and others are group 6 about April. GPs have very little knowledge on RA meds especially if they don't prescribe them.

I’ve just been called to have the vaccine this week as I’m a nurse. Just worried when I get there they won’t give it because as we know everyone gets scared about our meds! I’m on a very low dose of leflunomide and started benepali a few weeks ago. Rheumatology have been less than interested to have an opinion so I’m going armed with all the info I’ve gathered the last few months from NRAS just in case!

Neonkittie17
Neonkittie17 in reply to Jo30

Sorry rheumatology haven’t helped you. Haven’t helped me either re the vaccine and Rtx info or the CEV register .. no response since April on any of that! I think that we would have heard on here if a specific RA med wasn’t compatible and the National Society of Rheumatology would have made a statement on their website (which is where the rheumys look for their advice.) On the recent NRAS Zoom chat with Dr Galloway re RA meds and vaccines he would have said if a med was not safe. He’s the senior rheumy at King’s College hospital, London. Hope all goes well for your vaccine. 💗

Jo30
Jo30 in reply to Neonkittie17

I had the vaccine done! Had to see a consultant before for a quick health assessment prior to getting it and he was fab and signed my form with no issues ❤️

Neonkittie17
Neonkittie17 in reply to Jo30

Excellent! Glad you were able to discuss your health issues prior to having it and that must have made you feel a lot better for talking with him. 💗

Here's the link for the NRAS interview with Dr James Galway re vaccine implications with RA & Meds:

facebook.com/nationalrheuma...

Neonkittie17
Neonkittie17 in reply to Trutta

Saw it last week .. answers a lot of questions many people have asked in here. Thank you NRAS. 💗

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