Hi magSleI was also looking for any information anyone has been given on this topic. I had heard that the vaccine was not as effective in the immunosupressed. Maybe 50 to 60% . I would love to know if anyone has had any recommendations from their consultants. I have sle and im on azathioprine and hydroxy gor last 16 years.
We both need info to make an informed decision. I hope you're keep watching this post and it will reveal what we both need to keep things moving forward.
Hi I have lupus and lupus nephritis. I'm steroid dependent and take mycophenolate. I had the oxford / AstraZeneca vaccine last thurs without any issues.the only side effect I had was a headache for 24hrs.i know shielding must continue as the immune response isnt fully known yet but I hope by having the vaccine my chances of survival are better as I know I wouldnt survive otherwise x
Hi SpanielmadladyNot sure if you saw it or not but a question was posed to Jonathan Van Tam on Channel 4 news a couple of weeks ago. An immunosuppressed patient asked about the efficacy of the vaccines in such patients. Apparently, research is currently being undertaken by Birmingham University. Hopefully they will have valid data quite soon and then we’ll know how much protection each vaccine gives us 🤞🤞🤞
Thanks Sue .It would be nice to know how much protection we have even if it's not as high as people with normal immune systems.i did ask if those of us who have dmards bloods done might be screened to see if we have made a response but there doesnt seem to be any plans for this yet. Best wishes x
Hi SML. I wondered about the same thing. I’m on methotrexate and have my monthly blood test booked for Monday 15th. I’ll see if anything has changed although I don’t think they’ll do any specific tests following the vaccine.
I had mine done just before my vaccine and everything was normal except for wbc (but I've had a steroid increase) so I can compare my next ones .stay warm xx
Thanks for your reply. I don't know much about Lupus Nephritis. Do you live with Lupus SLE as well. Yes, I take steroids as well. I'm gonna look into Oxford one more because it seems govt have run out of Pfizer....
Lupus can affect organs with connective tissue so the heart,brain,kidneys and lungs.i have lung problems and in 2014 repeated bouts of pneumonia put me into heart failure for a year.kidneys remove antibodies from the blood and when they cant they get deposited in the kidneys causing lupus nephritis. Depending on where the antibodies are deposited depends on the severity. there are 6 classes I have class 5 which is in the membranes.it can only be diagnosed by biopsy and something like 60% of lupies have kidney involvement without realising as it. Mine was diagnosed after a routine lab stick at clinic was off the scale .now a kidney specialist looks after my kidneys not my rheumatologist I've been steroid dependent for 7 years 😔 . Xx
Thanks for the knowledge. Lupus is not one fits all, even when two people have the same conditions. You've been thru a lot medically, but it seems you've learned a lot about your body and I hope you'll continue to do so, to identify what you can do to maintain good health.
I think that was so frustrating about it all is all the little different ways it affects us especially when hcps try to fit us as square pegs into a round holes! my joints dont swell but I get pain took ages to persuade my rheumatologist 🤷♀️ then you get things like sjorgens, thyroid,anaemia etc thrown into the mix .I personally had to educate myself otherwise things would of become overwhelming when another illness becomes apparent but finding out how they link in helped me and I found them less scary .stay warm keep smiling xxx
Morning. Take care. Yes, let's keep wrapped up warm. Its freezing in Ldn... This is my highest flair up threat season because my blood doesn't circulate well, but I'm exercising indoors, instead of my daily walk.
It's cold here in Cumbria too.i managed 20 mins outside yesterday with the dogs before I got chest pains .....it doesn't matter how well you wrap up when the air your breathe is sub zero but like you with your circulation I know it happens .have you had snow ? Weve just had flurries .I'm off to the beach now dressed like Michelin woman dogs have their fleeces on then I'm in for the day.my son takes them out later.Happy exercising 🏋️♀️😉 xxx
Hi you sound like you’ve exactly the same issues as me, thyroid, anemia. So many different symptoms. I’ve everything you’ve got I long for spring and warmer weather. 😎
I do better in spring and dare I say it a cool summer....never thought I'd see the day I wished for a cool summer 🤨.it's not until weve had these cold spells I've realised how well I've done in the last 2 mild winters.stay warm keep smiling xxx
Do you find Mycophenolate is helping you. It’s another one I have stopped taking now nearly a year ago. I have been on the lot, Hydroclorquin ! Methertrexit ! I had the phyzer jab early Jan. I feel fluey and pain all the time so for me the jab was fine
Hi. Thanks for your contact. I don't know what the Mycophenlate is doing to my immune but my body hasn't rejected it and its monitored so I know its stable. I had more issues with Azathioprine (it was causing internal issues), but then I know someone whose body rejected the Mycophenlate so they are Azathioprine...Have you had the 2nd Pfizer jab yet?
Hi.i take hydroxchloroquine as well as mycophenolate and for me it appears to be working I've been taking it for nearly 18 months now hydroxchloroquine for nearly 2 1/2 years.Previously I was on azathioprine but had to stop it after developing drug induced hepatitis at 7 weeks.im prescribed pregabalin for pain x
Hi I’ve exactly the same illness as you and on the same meds, my dilemma was is it safe. I’ve been told it’s better odds all around. I’m down for 5ge Oxford vaccine next Friday. I’m glad to hear you are ok 😀
I had the Astra zenaca vaccine last Thurs , I have lupus and lupus nephritis am on steroids and mycophenalate , my renal consultant asked if they could take some extra blood from me next time I have bloods done to use in a survey to check for efficacy of the vaccine x
My INR levels have been unstable for years due to life changes and I get them checked before dental treatment so it makes sense to check my INR levels before vaccine. Thanks for your reply. Have you had any side effects?
Hello. I’m currently undergoing cyclophosphamide infusions and as a consequence am immunosuppressed. I had a discussion with the rheumatology doctor last week about the best vaccine and she advised that either vaccine would be appropriate for me. The guidelines followed are recommendations by British rheumatology. It is my understanding that neither the Oxford or Pfizer vaccine are prioritised for immunosuppressed patients so either/or is fine . Hope this helps
Thanks for your reply Susie. I had 5 mths of that Infusion so that's probably why I started taking immunosuppresants afterwards. Lucky you that your rheumy communicated with you, mine won't make time to discuss my issues with vaccine... I'm concerned that no trials have been done on immunosuppred, but neither of them probably have because they are so new...Pls contact me when you have it done to let me know how it goes and I'll do same with you.
I stopped taking Mycophenolate as soon as we went into lockdown, it had put me on a very high level, great for food deliveries. I had Organising Pneumonia and was put on high doses of Steroid from that it caused Glaucoma. So take your pick
Two weeks after the second vaccine dose you can take covid antibody test to see if you developed antibodies. Only then will you know for sure if your body produced them. Good rule of thumb is also if you develop a bit of fever after the seco d dose. It usually means your body is working to produce antibodies.
Thanks for your reply. What conditions do you live with? Do you take immunosuppresants? Whuch ones? Which vaccine did you have? Did you have side effects?
Morning Sara_A, thanks for reaching out. Great to read you've completed both Pfizer doses. What time periods between both jabs did you have to wait? Will you have an antibodies test to assess your protection?
At least, if you an antibodies test, you'll know if the vaccine has been worthwhile.
If you do, pls keep me posted and post on this forum.
I was really lucky and had my 1st vaccine on 16th dec as I'm a health professional but currently shielding and have been at home since March!! Briefly went back in Aug for about a wk but wasn't safe for me so he now been doing phone clinics from home since. So I had 3 wks between my doses. I haven't heard anything about getting antibody tests but I guess I'll have it if its offered tho theres nothing really I can do about it if I haven't developed enough immunity??! It may be an annual vaccine from what I can gather so far?? Like the flu vaccine. We should develop sufficient immunity I should imagine but we should still continue to be careful anyway as we should do to protect ourselves from catching anything infectious.
I’m having my first (Oxford) one this morning and I’m worried that it won’t work much due to taking Mycophenolate. I did have a week off until Sunday because I had a UTI - maybe should have stayed off for another week but that wasn’t advised by the person from my GP practice (pharmacist) and I did ask her. My sister, who is of good health but is a key worker, had hers a week ago and described a “drastic” response but I don’t know what it was as she clammed up when I told her o was having mine today. She does have a Penicillin allergy (I don’t) but just said “we are different people” and would say no more. I told her that it may just be that she mounted a good immune response and she agreed. I don’t know whether to hope for a reaction or not. I’m just out of a flare triggered by another treatment so may not notice.
I can understand your anxiety about your vaccine this AM, but pls remember that's driven by fear.
For your body to accept the vaccine, your mind needs to accept it as well.
Your sister may have had an allergic reaction to the vaccine. You take medication like Mycophenlate so your body is used to processing medication, so that may put you at an advantage.
Sometimes we assume that symptoms are our body rejecting foreign bodies, when our bodies may actually be processing or investigating the foreign bodies.
To put things in perspective, I hope you can look back at the other successful treatments you have had and that this will be another one of them.
Please keep in touch with me via private message or on here.
Thanks. I probably exaggerated my fear of side effects after a bad night.
It’s more a fear that the vaccine won’t work. Also my other half has spent best part of a year shielding with me, had to quit his low pay key work worker job to carry on shielding with me in our 1 bed flat. He’s going into hospital on Thursday for long awaited “urgent” referral to hopefully exclude bladder or renal cancer but isn’t in the priority group as he was for the flu vaccine.
Today we made it on foot through deep snow to the GP practice 30 mins walk away. I had my vaccine with other shielders and my GP administered it. I asked him if my husband, waiting outside, could go on a “no show” reserve list as he’s 59 next week so won’t get it for ages otherwise. But there’s no protocol in Scotland for no showers - which he agreed is crazy in this weather.
But anyway there was no suggestion of us hanging around after to check I was okay - just come straight in and go straight out - which suited me as wanted to get home on foot with no mishaps before the next great flurry. Long queue of younger looking shielding people outside standing in the snow!
So far all fine. Going to put my batch no in for the Zoe Covid research app thing now and just hope I get some immunity! I won’t ask my sister what she meant my “drastic” for a few days in case my imagination runs away with me 😉😀😊
No my gp just sat me down in my allotted chair and asked me if I’d ever had a bad reaction to a vaccine previously and asked me if I was on any blood thinning meds, injected me, gave me my leaflet, helped me get my coat back on and showed me which way to leave the building. I couldn’t see a thing as was snow blinded and I need my glasses which were all fogged up. So I don’t know if others were invited to stay for 15 minutes but I was just hooshed back out into the deep snow!! 🤷🏼♀️😃
I was told to sit in my car for 15 minutes to ensure I was ok. Don’t ask me who would check if I wasn’t!!! Also I couldn’t find a parking place at GPs so I was parked in co-op across the road!
Oh well that’s still a whole lot better an option than being sent back into the thick snow on near impassible roads! I think the GPs must all have state of the art 4WD but if anyone had a reaction it would be a job reaching us today!
I can't believe this!!! Is this also in Scotland?? Out of interest.Please see my other response to 282523 it's a long one sorry!! Its all about 15 mins observation period etc!
Yes, I’m in Midlothian. I was there last Friday, Shielding patients day. The vaccine was actually given by a GP and she explained that they didn’t want shielding people to be in close contact with anyone so they’d come up with this ‘sit in your car’ plan. As far as I know there was no one patrolling the car park, and I wasn't even there as their car park was full! She didn’t ask if I’d come on my own either. I did text my husband once I left the surgery but he was at least ten minutes away and wouldn’t have noticed me missing for about half an hour. By which time I could have been deid!
Sorry but that's terrible!! It doesn't matter if u are shielding everyone there is shielding!! That's totally daft isn't it! And u are all socially distanced and wearing masks so that's absurd and they cant just come up with their own rules!!! X
Yes I read it. Yes it’s Scotland. However I’m fine so I’m not going to challenge my practice on this policy presently after nearly a year of shielding - I need them too badly. It was the first time of actually seen one face to face since early March and it was very unusual circumstances anyway because there were shielders queuing up outside in the snow. I’m guessing they were running late anyway because of the extraordinary weather conditions.
I was slightly surprised to be ushered straight out as it isn’t in keeping with what I was told to expect. If I’d had any adverse reactions to vaccines previously then I’m guessing they wouldn’t have let me have it or else would have made me wait. But I guess most people had walked a fair way through deep snow to have theirs so I just didn’t want to clog up their system and was quite confident I wouldn’t have an anaphylactic response myself having never had one to any vaccine previously.
For ANY vaccine given u should be monitored for 15 minutes after it is administered!! Next time u go I wouldn't address this with them as they are not following guidelines. If I was u for ur 2nd vaccine I would sit myself in their view for 15 minutes as u are infact more likely to react the 2nd time after receiving something or the 2nd reaction could be worse (if u had some kind of mild reaction first time around tho).I am stunned by this, there should be a big socially distanced waiting/observation area for patients who have been vaccinated and u should either have on ur vaccine card the time u can leave or a sticker on ur top saying the time u can leave so that the marshall observing the patients can check ur time and send u off!!
I know things vary from place to place but this shouldn't as it's a nationally rolled out programme that we are all following.
I'd also be inclined to contact the practice manager as there have been anaphylactic reactions needing adrenaline in areas that I am in (not to frighten anyone but to highlight the need for this 15 minute observation period) yes u can still react after the 15 minutes but it is more likely to happen straight away if it is going to. A friend of mine reacted and needed adrenaline and was told that 3 people had the previous day so it's no good if u are sat in ur car on ur own or walking down the street!!!
This is unacceptable and please address this and take care of yourselves x
Oh okay thanks. To be honest it didn’t really occur to me because my glasses were so steamed up I had to remove them and all I could then see was haze. I’m not sure how many people they were allowing in at a time but I was seat 6 at the back so I’m guessing that was the maximum number and it was all done in the practice’s large waiting area.
The snow is so heavy here that I think it was probably a feat that there were any staff or patients there at all. I will definitely make sure I stay in eyeshot next time but I’m so nervous of getting Covid that I guess I and others were relieved to get back out into the thick flurrying snow.
I think my main issue with this is that they really wouldn’t be able to reach most people who had severe anaphylactic reactions in time as the roads are too impassible here just now for ambulances or doctors and haven’t been cleared at all.
Hi magI have an autoimmune condition and take lefludomide and mepracrine .had Pfizer vaccine Dec 12 and second Jan 2nd..and was fine..no I'll effects ..🙂..
I purposely dont read all the reports.i dont find them helpful and trust the scientist who know what they are doing..I worked for a clinical research centre for a while and know how stringent they are ..
Just to say...I did a lot of research into taking the vaccine as I was terrified of having a jab to illicit an immune response...and after a lot of discussion with my acute medical consultant I then contacted a virologist in Reading who had been on Your Questions Answered on the BBC.
On the question about immunosuppressed people like us he answered:
<<<<An immuno compromised individual is unable to mount the full response so the concern would be that even if they took the vaccine they would not be protected. My advice would be that an immuno compromised person should nevertheless take the vaccine if it’s offered to them but there should be a follow up to them to know whether they have generated the necessary antibodies and in addition to that they should discuss with their GP the possibility of receiving either convalescent plasma or monoclonal antibody therapy which will provide the immunity in the intervening time before they generate their own.>>>>
I then researched the virologist and wrote to him in less than 24 hours I got a reply. This was a personal email so this is just a short excerpt with the pertinent information...
<<<<Neither vaccine contains adjuvants, which are often included in vaccines to ensure a good "take" so my view would be that you could take either of the vaccines if they are offered. In essence I judge that the risk assessment of the possible outcomes is in favour of vaccination. But it would your decision, taken after discussion with your medical support, so you must weigh up the pros and cons involved. If you go ahead it should be possible for a finger prick antibody test to confirm you have generated immunity. It is essential that it is the antibody test, not the antigen tests that are currently in use. And it must be able to measure S antibodies (the kits vary and are based on either S (good) or N (no good) proteins). Failing that, a lab test would tell you if you had the necessary antibodies, if it was available to you>>>>
I had the vaccine on Saturday at home and other than a lump on my arm and headache, so far so good.
I received a phone call this morning to check in on me and to confirm I will be getting the antibody blood test at the beginning of March to see if I’ve made antibodies.
I would urge anyone who is immunosuppressed to ask your GP for the finger prick or blood test.
I have multiple autoimmune diseases and diabetes currently on Rituximab biosimilar biologics.
I suspect my GP will look at me as if I have two heads if I ask for an antibody test - and given what you say, I will 😉. Quite surprised (but then, perhaps not) that this is not routine advice given to those of us who are immunosupressed.
Yep, I copied my emails and his email to the GP so I think they have little option but to do a simple blood test as the Professor specifically stated it on BBC Your Questions Answered on the BBC, 11 January 2021 at 8.44pm.
What infuriates me is that we have to research so much to find out this sort of information as our questions aren’t being answered. Thankfully, he is the one person that answered a question in full and then said what blood test to ask for. Getting it in writing was a Godsend. I am so grateful to him.
Having a vaccine, if we don’t produce antibodies, it is really wrong as “they” don’t tell us we may not produce antibodies. As I said to the GP, all the coverage, including my GP’s own fB page, say the vaccine is safe and effective... yes, for the many that may be true, but for the “few”... we seem to not be included in the coverage, safety and efficacy. Also, saying it’s totally safe, again, is not correct... the vaccine is to illicit an immune response which means people could flare severely depending on whether disease is under control and at what point your medication cycle is. Of course, a flare is better than dying of COVID-19. I’m not trying to dissuade anyone from having the vaccine, quite the opposite, but if you are able to get a blood test to see if you’ve produced antibodies then I feel people like us will feel more reassured. I’ve had my first vaccine, so far, so good. I am hoping so much I’m going to produce the antibodies.
Clinical trials in earnest didn’t start for immunosuppressed people, to my knowledge, until 22nd November 2020.
I hope you and anyone who requests this, can get the blood test; it’s such a simple thing to do and there shouldn’t be any refusal to do this. Best wishes xx
So many ways we have to use valuable energy to manage our health and ensure that others do too!
I learn more from this forum than anywhere else - in fact, not one doctor has ever spoken to me about lupus (in any shape or form, including treatment plans, effects of medications etc.). I'd be quite lost without this forum, it’s lovely members, and LupusUK.
My goodness, we do have to be determined, don’t we 🤷♀️🙂xx
Thank you Dragonfly4, that’s very informative and useful to know. I think GP’s may be in inundated with requests after reading this! I for one, will be contacting them. Best wishes x
Yes, I think they may well do. My question to the Professor, after explaining my medical needs, was “can we insist that my GP does this test?”... so when he replied and stated exactly what test needs to be done, then I think my GP didn’t have an option! Plus they know I’m not really going to take no for an answer as this is my life, not theirs!
(When I joined this forum I had made a decision to stop all medications and let my illness do what it does and take me away from the pain. A wonderful person in this forum asked me why I hadn’t been offered biologics... I saw my then consultant and asked why and was then referred to acute medicine and have been on bios since. I’m 56, have been ill and dx 32 years ago... it should not have taken a talk with family about dying and stopping all the poisons I have been taking since 1989, to be told there was an option of biologics, after getting info from good people here. So the above is to try and inform as much as possible. People here got me through some tough times. Paying it forward).
Hi magSLE, I have SLE with lung involvement and take mycophenolate. I had a telephone appointment with my rheumatologist a few weeks ago and a face to face with the lung consultant just before Christmas. They both recommended I have the vaccine but didn’t say which one or how effective it could be. I had the phizer vaccine nearly two weeks ago, the only effects were a sore arm and a slight headache. I don’t think they offer a choice of vaccine, I felt as if I had won the lottery after having it and can’t wait for the second one😆 until then I will carry on shielding and hopefully the virus numbers will be reduced enough to start venturing out or seeing family 😊🌈xx
I take Mycophenalate Mofetil and Tacrolimus/Prograff for my kidney transplant, nothing extra immune suppression wise for the SLE. I've booked myself in for the Pfizer vaccine tomorrow as the GPs are only doing the Astra Zeneca. My mum was quite poorly after the AZ so I've decided to go through work for Pfizer, hoping they'll do this as ive been off shielding since March last year. My goodness almost a YEAR! 😱 It's going to be so hard to go back to work as I've deterioration so much since then especially with the chronic fatigue side of things. Anyhow, I digress. My transplant team have said to have the vaccine as any amount of protection is better than none at all.
Hey Mag SLE. Unfortunately, there aren’t any studies that tested antibody titers in the immunocompromised after the vaccine and beyond 6 mos, we still aren’t sure how long the vaccine confers protection in those that are even immune competent. You can get your antibodies checked after getting the 2nd vaccine. I’d wait about 3-4 weeks and try it. Make sure you specify for the spike protein antibody test and not the nucleocapsid antibody test. The vaccine will only confer antibodies towards the S spike protein.
I have a chronically low WBC. On Plaquenil, intermittent medrol paks for flares and monthly IVIG. Had Moderna #1 late January with some clamminess/nausea for 1 day. Otherwise, no problems.
The good news is that there are UK studies well underway which are examining the immune response to the vaccines in people taking immunosuppressant medications. Hopefully we won't have to wait long for early findings to be shared.
Hi , I am on mycophenalate and steroid for lupus nephritis , my renal consultant said I should get the vaccine , I had the Astra zenaca vaccine last Thursday , I had no side effects afterwards x
Please can anyone let me know if they asked their GP for a blood test for antibodies and if they have had their test and the result . Please can you let me know ASAP. THANK YOU.
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Covid 19 Vaccine
Study looking into the effects of the COVID-19 vaccine in patients with autoimmune diseases
