Trying to work this out rationally and objectively but would appreciate input from others in the same boat.
The news today revealed that WHO are not happy with countries going ahead with booster (3rd) jabs when other less developed countries like Africa are still trying to source for first jabs.
So, it looks as though the roll out of boosters in the UK, from Sept, might be halted.
The UK Govt were keen to roll this out before the winter months to the most vulnerable, because they predict more (and stronger) mutations are likely to occur over the coming months.
Is anyone else feeling very uneasy about this news?
I had planned to stay as safe as possible (ie shielding for the most part) until the booster jab became effective (maybe sometime in November). At that point I would start to venture out more.
But, if the booster doesn't now go ahead, I'm not confident that my immunity to COVID would ever be strong enough, unless I try to give my antibody level now by catching COVID, whilst the vaccine protection I do have is still relatively at its peak strength in me and the Delta variant is (relatively!) risk free.
Has anyone else given any thought to this yet? If so, have you managed to reach any conclusions?
It's a tricky old subject but I'm really concerned that "Freedom Day" has left us behind without much of a paddle.
Thanks. x
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Flinda
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I haven’t a scoobie .. I would like to know if the vaccines we have had have worked and if we do need a booster . Both jabs knocked me about the first the worst . If we don’t need them then others in the world can have them .I don’t want something I don’t need on the other hand if it didn’t work then normal life can’t resume fully . I can limit myself out and about and shop online but I work in a primary school ( the biggest spreaders are children).
Javid has said today that boosters for vulnerable groups should go ahead in September but he is waiting for the JVCI who had a meeting about this this morning I believe but recommendations not out yet. I'm going away to a hotel for two nights next week and its beginning to feel like a gamble now, although a few months ago my Rheumatologist told me I would be ok to go out and about now. I'm on 20 mg of methotrexate and did an antibody test which said I had 1100 score. I've stopped washing groceries but uneasy eating inside restaurants. But it's so stressful trying to weigh it all up. And yes, I should be more altruistic about the poorer nations needs. Dare I say in a way it was easier when we were at the beginning in lockdown and all these decisions were out of our hands and I could batten down the hatches and watch endless Midsomer murders.
It was the Roche one that Lloyd's do. Yes it scores positive anywhere from .8 to 2500+ so I was pleased with my score, (but a friend who doesn't have RA scored 2500+.) Mustn't get competitive I suppose! But thanks for pointing out the positive I am going to go on holiday.. Hever Castle b&b.. and then for a week in Poole at Sandbanks, so let the dice roll!!
Lucky you! Off to Hever and then Sandbanks. The first stop is familiar to me here in Kent and the second brings back memories of the late 1940s. The beach there was still covered with barbed wire and what was left of prewar wooden shacks were derelict - but my friends and I loved it - much of the sands not "wired" were just wild. We cycled there from Lower Parkstone.
Thank you. Grandma retired to Bournemouth and mum used to cycle to the Blue Lagoon cafe at Lilliput. She was there all through the war, dancing in the Pavilion with the soldiers and yes, she said Sandbanks was just that, a bank of sand with huts. She took us on holidays and I’ve loved it ever since. So I’m braving Covid and going!
Lilliput!! We lived on Sandbanks Road from 1944 until 1948 - a short walk (for 2 kids) to Lilliput. There was a swimming pool there where I taught myself to swim. I was 10 when VE Day was celebrated by a street party; another one followed on VJ Day later. In spite of the war, it was a great time to be a child - such freedom to wander about. I don't envy today's kids with all the restrictions they have to put up with. We could also walk to Poole Park and when the lake froze over in the hard winter of 1947 we "skated" around on it (no skates; just sliding in our shoes!).
A couple of years ago an old friend was in a Care Home in Swanage, and we drove there via the ferry at Sandbanks - first time I'd visited Sandbanks since the 1940s - I didn't recognise it at all. No surprise!
I wish you good weather, there's some talk of hotter and drier weather next week and for the Bank Holiday.
I must admit that my conscience was pricked when I heard this on the news and did wonder if I'd feel guilty if offered the booster. I've never shielded completely and am doing more things now, although still being careful. I don't feel that I'm at particularly high risk - 61, on Methotrexate, Hydroxychloroquine and Sulfasalazine and no other health issues - and I do feel that the only way we're going to live successfully with this virus long-term is to get as many people as possible (worldwide) vaccinated.
I have had a spike protein antibody test, and that shows I have responded to the vaccines I had. So I am not going to fret about a booster dose for the moment but just carry on as I am. I am living pretty normally, but remain careful.
I wonder if a third shot would even help if the first two did nothing. Not sure I want to get a third in that the second one really made me feel sick and my CRP skyrocketed although it is usually normal. I would support getting a vaccination out to the countries struggling before giving me a third shot.
If third world countries don’t get vaccinated ….Covid will continue to flourish.We are fortunate to be in a country who got ahead of the game & a high proportion have been vaccinated…so not having a booster in the Autumn seems fair enough if the vaccine is diverted to poorer countries….which in the long term will benefit everybody.
I sympathise with everything I've read from the original post to the comments that followed - but I do believe the 'fear and control' are our true enemies now. We need a booster jag against fear. Life has to be lived. That involves risk. I know this to be true after I witnessed the dignity and determination of my late father as he tried to cling onto life before passing away last May from Parkinsons, dementia and a hospital fall. If ever there was a lesson in gratitude for life it was there right before my eyes.
You must continue with your life or there is no point, in my opinion. If you hide away the fear will find you anyway. Please live your life.
I’m sorry to hear about your father…Parkinson’s Disease truly is a horrible condition that has no let up.You are so right, we should count our blessings & encourage the richer countries to donate vaccine to every country that needs it….that will protect us far better than hiding away.
Good point, reduce the fear by avoiding crowded indoor places and always mask, except when outdoors with lots of spacing from other people. Avoid any place that does not mandate masking.
Sorry to hear this news. Really many people went into deep trouble due to this virus. People are following so many precaution steps, still this virus is not comes to end.
I hope you weren’t serious when you said you could try to catch COVID to give your immunity a boost. I am just recovering from Covid, which I got even after two vaccinations, and I can tell you it was NOT a mild illness! It was the worst illness I have ever had, and still not completely recovered after over 4 weeks. Having to have a chest X-ray next week, and still no smell or taste. Be careful what you wish for.
I for one will gladly take the booster jab which we will hopefully get in September, I’ve been on steroids and feel more vulnerable atm. I think a booster will help my mental health. I have friends who live in Turkey, some of them are now been offered a 4th vaccine??? There are lots of people over there refusing the vaccine and they just have walk in clinics to get them. Unfortunately there levels are still rising and the country is still in the Red Zone. Who knows what we should do for the best, I’m still very careful when out and about but I wish others were. Stay safe everyone xx
Yes, it's difficult. I want to know when the research on dmards and vaccines will be available (if ever.) I can't see the point in having a booster if the first 2 didn't work. What's the point?
The answer is not simple. Getting the rest of the world vaccinated will help everyone because the virus will not stay in one place -that is certain and the Variants develop only in those people who come down with the virus.
The WHO advice/opinion is, I am guessing, not intended for those with immune system issues. So be sure that you understand whether your country is not giving shots to people like us, rather than in general to those whose immune systems are fine.
This was question was asked the other day on my local radio. The virologist answering the question said we've got a stock of Pfizer vaccines and the logistics of trying to get the vaccine delivered to remote parts of the third world would be very difficult because of now it needs to be stored. He didn't think it would happen.
I booked my flu vaccination yesterday for husband and myself at my doctors surgery, I was asked if they had the booster then would we want it at the same time. I did ask if it was okay to have them both together, was told yes because it's just a booster. I'm still going to contact my Rheumy department to check it's okay, not listen to the receptionist advice.
It seems from the latest news that the those with autoimmune problems will get the third vaccine. I feel this is only fair as most of us will not have acquired full protection from the first two doses. I took an antibody test and scored 981 but have since read that our RA medication can not only suppress the development of antibodies but is thought to disrupt the relationship between antibodies and other parts of the immune system thereby making the antibody score at best unreliable. I am one of Mr Javid’s cowards and have been very careful what I do. However I had a mystery virus almost exactly a year ago which involved all the symptoms of Covid, including loss of taste and smell, but got a negative result from the very unreliable home test kit at the time. Although I am much better now, I still cannot walk uphill without having to stop and catch my breath and still have days when fatigue is a problem despite my RA being good. My asthma had been under complete control until this virus but I have had to increase my medication. I do not know what another dose of Covid would do to me and would not recommend that anyone deliberately gets Covid. I would say to Mr Javid that I wear the yellow streak down my back with pride and it is time the government sorted the question of the third vaccine out.
Yes like you I am watching the news with increasing incredulity. I have virtually no protection from the vaccine and am getting sick and tired of being ignored. I have been trying to get revaccinated to see if that helps but have met a complete brick wall from my local CCG and am now pursuing it with my MP. Did you see the post that was put up regarding the APPG webinar for immunocompromised people? Last week I visited my sister ina rural area, we are always very careful but a contractor she had to visit while I was there tested positive after I left. Everyone including him was masked and distanced and touch wood no symptoms, but for heavens sake if I can't even see close family without risk what point is there to life? I can only remind everyone that reads this that we are all voters and taxpayers and we deserve to be heard. Remember your MP is there to help you, regardless of what you might think about whatever their political colours are, you are their constituent and they are there for you.
My consultants asked my GP to repeat my vaccines as mine didn’t work either. Can you ask your rheumy to write to your GP? I have to wait though till B cells come neck before repeating them. Good luck.
Hi thereI have asked my Rhuemy via the nurses as everything goes through them. I basically got fobbed off and told it was nothing to do with them and I should ask my GP. Asked my GP who said they'd never heard of such a thing but would ask the local CCG. I don't think they ever bothered so I asked the CCG who said it was not provided for in the guidelines so no. I have contacted my MP who is 'looking into it' with the dept of health but I am not holding my breath for that. Would you mind if I asked what area your Rhuemy is in and what area your GP is in? If you have been revaccinated then obviously it is possible regardless of what they are telling me.
I’m in Kirklees and I have chronic immunity re low igG for 3 years causing bronchial episodes and 22 lots of abx as a result of Rtx and my B cells don’t repopulate fast. All this is against me re immunity and a zero antibodies test too, so my respiratory consultant has told my doc and so has the rheumy and I spoke to one GP recently who says he agreed. I am in the midst of writing to confirm all this to my doc to confirm I need the repeat covid vaccines as opposed to one booster as there’s nothing to boost! It is due to Rtx and our RA meds we have no antibodies from the vaccines so how yours can say it’s not to do with them??
No, I can’t be revaccinated until my B cells are sufficiently back or the same would happen again .. Rtx would blunt the vaccines. I have to wait for several more months. 😑
Thanks for your reply. I am on MTX, Leflunomide and Hydroxy and I started RTX in February. Because my RTX was delayed by low Ig I had a large dose steroid injection to help with a flare only a week before I was vaccinated. Despite all this I did have a response but it was what they call a very weak unstable positive. After all this time I would think it has faded to no antibodies like yourself. Like you I need a complete revaccination and this time I would take care to keep off the steroids and stop my MTX for a couple of weeks. Oh and no RTX for at least eight weeks after. Anything to try and get some protection. I have a naturally low Ig, it was 5.6 and is currently 5.2 but hopefuly will recover a bit more. Like all of us I am tired of this half life. I am a reasonably fit active person and now it is really getting me down. It also means my poor husband is affected as he has to be careful too.
Exactly the same here .. in limbo. Hubby is shielding with me and has been strictly doing that with me since early March 2020. Not good but it won’t be this way forever. Hopefully we’ll be able to get other treatments too such as monoclonal antibodies. Are you still on the other three meds as well as Rtx? I left a gap of 23 weeks, almost 6 months between the previous single pulse of Rtx and first Pfizer and still it wasn’t long enough.
Yes although the long term plan was to use rtx to allow me to reduce my mtx indose or maybe come off it. I have rheumatoid pulmonary nodulosis which just means lung nodules and had part of my lung out last year as one of them grew too big. There is some thought that in some circumstances mtx can make them worse. Rhuematoid the disease that just keeps giving😊 it's funny isn't it you get sort of used to the trials and tribulations of RA but then something makes you angry and for me it's the difficulty of getting a revaccination. Something relatively easy but with so many hurdles put in the way. Oh well just keep trying.
Sorry to hear of a very trying time. It took me ten months last year to get recognised as CEV as a general rheumy nurse botched that for me. So many obstacles with the igG and all that has caused. You have to keep trying. 😑 Have you had a talk with your GP on the phone or did an admin person tell you no re repeat vaccines? You could write to your rheumy and say it’s making you very anxious that your vaccines haven’t worked and you think it IS a rheumy issue also as it was the Rtx blunting the vaccines’ efficacy.
I’m sorry you’re having to resort to this and I would do the same myself, absolutely. I presume your GP’s know how Rtx can affect and blunt the efficacy of the covid vaccines. I’m hoping they’ve read the Gov green online doc and had all the info sent to them. There’s been quite a lot written now about Rtx from very respectable sources. It’s as though you haven’t had the vaccines if you’ve discovered you’ve got no antibodies I was told so in that case it’s like you are presently being denied the opportunity of vaccines to avoid the virus and that’s dangerous. I think decisions on this could well be changed once the Octave results are out. I can only think the GP’s are thinking a booster will suffice but what if there is nothing to boost as I said before? I hope you have the support of your MP. 🙏🏻
I think you brought up an important point here, NK, that issues that concern the rheumatologist dept should be addressed by rheumatology doctors. So many times I have been told by a rheumy nurse to see (!) my GP when the question concerns a medication prescribed by the rheumatologist. My GP can't deal with a problem he is not treating - he just refers me back to the source!
There follows a lot of toing and froing to the satisfaction of nobody.
I do think if Rtx or another med caused the vaccine to fail or be doubtful of its efficacy then it’s the GP who should understand meds they don’t prescribe have major effects on conditions that the GP’s treat.
Yes, if the GP treats a condition that is affected by, for example, RTX then he should be concerned. My GP only treats me for a hypoactive thyroid which is not affected by my RA medicines. Interestingly, I also have a haematological condition which needs annual blood checks. My GP was asked by the haematologist to do these checks - but he refused. His reason was that he was not funded to do so. This still hasn't been resolved since my last check at the hospital in October last year. So it won't be long before the issue resurfaces!
bienassis PS Glad I'm not the only one to fumble with "clicks".
Wow that’s very dismissive of your GP. My practice ask if I want my hyperthyroidism 4 monthly bloods doing and any other ones I’ve needed recently for immunosuppression. If it’s more in depth blood tests requiring sending to different major hospitals such as B cells (as my RA hospital is a small one and sends those off to the city) I am asked to provide a form from my rheumy but the GP practice happily do FBC every 3 months at my practice. Blood sugars and cholesterol too. I hope you can get your consultant to monitor you more frequently and give you a supply of blood forms for 4 monthly or whatever it is you need.
Interesting how GP practices differ. My GP looks after blood testing in general plus the annual thyroid, cholesterol and blood sugars as these are tests he is funded to do. But when the haematologist referred me to the GP for an annual check my GP wrote to her and said he wasn't funded to carry out that test for them. He is funded to carry out tests every 3 months for the methotrexate and infliximab prescribed by rheumatology. Why there should be such a distinction between these two departments is a mystery to me. I have asked, but get no sensible answer. I don't take any medication for the haematological condition, it is just a check on the level of a paraprotein in my blood (IgG).
I was copied with both letters and wrote to the manager of the haematology dept about it, asking her to sort it out as I felt in limbo! The GP wouldn't budge but the rheumatology dept organised my last test in October 2020 at the hospital because nothing had been decided. In fact, my rheumy sent me an advance form last year dated October 2021 for the next test, but she has recently retired. I'm not at all sure how this now stands as that particular blood test is not for a rheumatological problem, but is for a separate haematological condition, but haematology think the GP should handle it. My ex rheumy was trying to help out.
What a muddle! I have phoned the Helpline and the nurse I spoke to said she would make enquiries, but it wasn't a rheumatological concern. I'm still waiting to hear. If nothing turns up I shall visit the phlebotomy dept with the advance form sent last year and see what happens. I think my ex-rheumy had already planned her retirement and sent me that form to tide me over in case there was trouble. But I shall contact the Helpline again before October.
At sometime during the past year while this has been going on I had a letter from the head of haematology saying he had never in all his experience had a refusal from a GP to monitor bloods. Nevertheless, he offered no alternative!
Phew! Hospitals have their own inter-departmental politics like any other institution, I suppose.
Rituximab has caused my igG and igM to give me chronic side effects for 3 years so my rheumy is investigating them for me at the moment re immunoglobulins and my B cells too. She sends me the blood forms and I go to my GP to have them done by the nurse as my GP and rheumy prefer me to have them done in the less busy environment of the GP practice. Ig’s are done as a routine part of the FBC but the Ig sub-class tests are not. Doesn’t sound too helpful though from your GP. 😑 Hope you can get something sorted out when you sort the helpline. x
Thank you for that info regarding the relationship between your rheumy and the GP. It does throw light on my problem in that while it was the rheumy asking the GP to do any blood test, it worked. But once I was referred by the rheumy to the haematologist so that I could get a fuller picture of the condition, everything changed as far as my GP was concerned. I was now a patient of two departments.
It all sounds crazy to me but I'm going to phone the Helpline again this morning and see what is happening.
When I saw the consultant haemotologist she explained that the condition did sometimes surface in RD but had nothing to do with methotrexate (the only drug I was taking at that time) but was not uncommon in the elderly generally. In most cases it goes unnoticed but sometimes it turns up unexpectedly when a patient is having a series of tests for a condition totally unrelated. Once recorded they were obliged to "keep and eye on it". Who knows how long this has been present?
Have a good week; forecast looks better towards the Bank Holiday weekend.
Hi, Hope your helpline can help and you feel steady at the mo. I’m just checking my phone and then taking a week away from here as I need to do some medical chase ups myself - letters/emails/phone calls and house admin too. Speak soon and have a good week/weekend too and yes, the forecast seems better this week. x
I will certainly be happy to get the booster plus the flu vaccine in September.
It is 7 months since I had the second pfizer vaccine and my doctor said even if I had had any protection from those first two jabs, which nobody knows as yet, I would now be very vulnerable to the disease. If my age is factored in (86) that makes me unlikely to recover from the illness. I would rather not take that risk.
I think we will need a topup like the flu jab. The Jvci were meeting this week to discuss boosters. I read that RA bods are 33-65 percent covered by September so it’s back in the house for me if no booster 🐁
That’s good if you’ve something to top up but for those who know they didn’t create any antibodies I think then you need to do the double vaccine repeat and I certainly want that. I’ve been shielding since March 2020. I’m sure that the immunosuppressed and seniors will get the booster and first.
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