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Immunosuppressed ? ... Come in !
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I'm unfortunate enough to have a medical condition that leaves my immune system suppressed and barely funtioning. Pre-Covid, catching colds, flu, infections was always a high possiblity but manageable. With Covid, every aspect of life has to be risk assessed...
And now, as you might know, the vaccines have little effect in reducing risk for this group. Personally, it has been a massive set back in trying to get back to some kind of normality.
Would be good to hear from any others that are immunosuppressed / at risk of serious illness from Covid.
How are you coping? Any thoughts you just want to express that you can't elsewhere? Need advice or care share help? |
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By (user no longer on site)
over a year ago
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We are both immune compromised and where in the government shielding group.
We have had covid twice and my partner had no symptoms either time and I had none the second time and only very mild symptoms the first time.
For us the vaccine seems to be working fine but unfortunately that isn't the case for everyone in this group.
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Thanks for the input. So you were both vaccinated before catching it twice? Good to hear it was mild.
I've recently found out that people in this group were supposed to have been offered a third PRIMARY jab (not the booster) a short while after the second jab...this 'third primary' roll out seems to have been cocked up completely, only a small percentage got invites.....still awaiting that letter myself before then needing the booster (4th jab)  |
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By (user no longer on site)
over a year ago
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"Thanks for the input. So you were both vaccinated before catching it twice? Good to hear it was mild.
I've recently found out that people in this group were supposed to have been offered a third PRIMARY jab (not the booster) a short while after the second jab...this 'third primary' roll out seems to have been cocked up completely, only a small percentage got invites.....still awaiting that letter myself before then needing the booster (4th jab) "
No only second time.
The first time I had mild symptoms, just complete loss of taste and smell.
Only a small percentage of people were offered the "third primary" but my understanding was it wasn't all in the same category only those who advised by a doctor.
Depending on what vaccine you had the first 2 times the booster would be a 3ed if Phizer because thats all that's offered at most centres with a few offering Moderna. |
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By (user no longer on site)
over a year ago
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"Hopefully with 2 bouts of Covid and 2 lots of jabs you're both swimming in enough antibodies to have some level of working immune system now... must give you confidence!
"
We have also had the booster.
Yes it does but we are still careful. |
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By (user no longer on site)
over a year ago
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I’m currently being investigated as they believe I have an autoimmune disease  I never considered the extra risks of covid If I’m put on immune suppressants |
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"Thanks for the input. So you were both vaccinated before catching it twice? Good to hear it was mild.
I've recently found out that people in this group were supposed to have been offered a third PRIMARY jab (not the booster) a short while after the second jab...this 'third primary' roll out seems to have been cocked up completely, only a small percentage got invites.....still awaiting that letter myself before then needing the booster (4th jab) "
Chase your letter up. We've been doing loads of 3rd primary doses here in Notts. Try speaking to your consultant's secretary. You should have been offered it 56 days after your 2nd dose.
Stay well x |
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"Hopefully with 2 bouts of Covid and 2 lots of jabs you're both swimming in enough antibodies to have some level of working immune system now... must give you confidence!
We have also had the booster.
Yes it does but we are still careful. "
All of the vaccines are the same wether it is a booster or third primary. They come from the same vials and are the same thing. The difference being immunosuppressed
people didnt have to wait 6 months before their third one they could have it sooner. |
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"I'm no doctor but these vaccines are different to most used previously and they may offer better results to immunocompromised but ask your consultant for advice"
No you are no doctor but I am a nurse and can tell you the vaccines are exactly the same as those given previously it is just another dose.
The only difference between a booster and third primary is the timing of the vaccine. |
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"I'm no doctor but these vaccines are different to most used previously and they may offer better results to immunocompromised but ask your consultant for advice
No you are no doctor but I am a nurse and can tell you the vaccines are exactly the same as those given previously it is just another dose.
The only difference between a booster and third primary is the timing of the vaccine. "
While the vaccine is the same the size of the dose isn't. A third primary dose is 0.5ml the booster dose is 0.25ml (half the full primary dose). |
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I have an autoimmune disease (one of the few that - last I checked - isn't one that makes me vulnerable. I don't take immunosuppressants) and I have vulnerable people in my family and friends. Fortunately the most vulnerable are in areas with extremely high vaccination rates.
For unrelated reasons (clinical trial mess) I've had three primary doses and will be having a fourth soon. |
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Had my second primary mid May, so missed my third by a long shot now. Only discovered the third primary existed a few weeks ago.
Have been chasing it up best I can, between calling 119, my GP, my consultant...they all advise calling the other, going in circles. Did some research on social media about 'third primary jab' and this is a common compliant. Seems Notts is on the ball!
"Thanks for the input. So you were both vaccinated before catching it twice? Good to hear it was mild.
I've recently found out that people in this group were supposed to have been offered a third PRIMARY jab (not the booster) a short while after the second jab...this 'third primary' roll out seems to have been cocked up completely, only a small percentage got invites.....still awaiting that letter myself before then needing the booster (4th jab)
Chase your letter up. We've been doing loads of 3rd primary doses here in Notts. Try speaking to your consultant's secretary. You should have been offered it 56 days after your 2nd dose.
Stay well x"
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"I'm no doctor but these vaccines are different to most used previously and they may offer better results to immunocompromised but ask your consultant for advice
No you are no doctor but I am a nurse and can tell you the vaccines are exactly the same as those given previously it is just another dose.
The only difference between a booster and third primary is the timing of the vaccine.
While the vaccine is the same the size of the dose isn't. A third primary dose is 0.5ml the booster dose is 0.25ml (half the full primary dose)."
That depends on the vaccine given. Pfizer is 0.3 for all doses. Moderna is 0.5 for primary doses and 0.25 for boosters. AZ is 0.5 but we haven't been using that for boosters here |
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Ah, sorry to here this OP.
I'm a bit of a medical mystery, as I have an autoimmune disease (2 actually!) which requires me to take immunosuppressants but the weird thing is, I never catch colds or flu. Obviously, I get my yearly flu jab too. And I've had my third dose of Covid vaccine so while I'm not going crazy and socialising in massive groups, I am living life as normal as I can.
Big hugs to you xx |
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Thanks for the kind words...
Good to hear you can live as normal as poss...wonder if it's the type of meds you're on? Can I ask what you take (PM if prefer?) as I've been offered a switch to a bio-similar before...just to see if it's in same category & has different/fewer side effects?
Or maybe you're just made of tougher stuff!  |
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"I'm no doctor but these vaccines are different to most used previously and they may offer better results to immunocompromised but ask your consultant for advice
No you are no doctor but I am a nurse and can tell you the vaccines are exactly the same as those given previously it is just another dose.
The only difference between a booster and third primary is the timing of the vaccine.
While the vaccine is the same the size of the dose isn't. A third primary dose is 0.5ml the booster dose is 0.25ml (half the full primary dose)."
For Pfizer which is all we are giving in our area at present is the same dose for all vaccines.
Moderna is given in different doses depending on which one you are having. |
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"Thanks for the kind words...
Good to hear you can live as normal as poss...wonder if it's the type of meds you're on? Can I ask what you take (PM if prefer?) as I've been offered a switch to a bio-similar before...just to see if it's in same category & has different/fewer side effects?
Or maybe you're just made of tougher stuff! "
I am now Adalimumab injections. It's potent stuff but marvelous. I'm completely pain free for the first time in 25yrs. (I also take leflunomide & sulfasalazine).
I was diagnosed with RA when I was 30. Was on methotrexate for years, but then stopped being able to tolerate. So I suppose it kinda depends what your condition is.
Do chat to your consultant though. Xx |
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By *akie32Man
over a year ago
winchester |
i have a poor if not non existant immune system, due to cancer and other things, i just carry on as normal, i always used to steer clear of crouds etc, and only go out when i had to, only difference is now, i wer a mask, not sure how much good it does, but it makes me feel safer.
My attitude is, you only have one life, you cnt let things like this get to much in the way of licing it, your a long time dead, and if that happens because i caught something while doing something i enjoy and want to, then so be it, you cant live in a bubble |
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"Im also immuno suppressed I have had 3 primary and taken two antibody tests both negative  "
Sorry to hear that. Must be stressful. How did you get the antibody test, private testing? How are you dealing with the risk? |
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I am now Adalimumab injections. It's potent stuff but marvelous. I'm completely pain free for the first time in 25yrs. (I also take leflunomide & sulfasalazine).
I was diagnosed with RA when I was 30. Was on methotrexate for years, but then stopped being able to tolerate. So I suppose it kinda depends what your condition is.
Do chat to your consultant though. Xx"
Thanks again, helpful stuff - your meds are in my category (and yes, due for a big review with consultant). I'm trying to boost immunity through diet also...is there anything part of your diet/lifestyle you could attribute to resisting colds, bugs etc?
Anyone else's tips on immunity boosting VERY WELCOME...
Currently reading about exposure to cold ie. regular cold showers and the bodies immune response to it. Interesting stuff. |
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"i have a poor if not non existant immune system, due to cancer and other things, i just carry on as normal, i always used to steer clear of crouds etc, and only go out when i had to, only difference is now, i wer a mask, not sure how much good it does, but it makes me feel safer.
My attitude is, you only have one life, you cnt let things like this get to much in the way of licing it, your a long time dead, and if that happens because i caught something while doing something i enjoy and want to, then so be it, you cant live in a bubble"
Very sorry to hear this. That's the attitude I was coming around to in recent months but the winter and the extra risk it brings has got me hesitant again. I think "2 years of living lost, can't go on like this anymore" but then the fear factor creeps back in and start avoiding making big plans. |
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"
I am now Adalimumab injections. It's potent stuff but marvelous. I'm completely pain free for the first time in 25yrs. (I also take leflunomide & sulfasalazine).
I was diagnosed with RA when I was 30. Was on methotrexate for years, but then stopped being able to tolerate. So I suppose it kinda depends what your condition is.
Do chat to your consultant though. Xx
Thanks again, helpful stuff - your meds are in my category (and yes, due for a big review with consultant). I'm trying to boost immunity through diet also...is there anything part of your diet/lifestyle you could attribute to resisting colds, bugs etc?
Anyone else's tips on immunity boosting VERY WELCOME...
Currently reading about exposure to cold ie. regular cold showers and the bodies immune response to it. Interesting stuff."
I'm not sure about boosting immunity through diet, as having RA the whole point of my meds is to suppress my immunity as it cannot detect between pathogens and my own cells! But I would imagine the benefits of a healthy diet overall far outweigh any negatives.
Cold showers is a different kettle of fish as it would appear the effect is temporary. Maybe if you can tolerate it, do that prior to getting out & about for a short term boost?
It must be shit feeling like you have to stay in & avoid social interactions. Especially at this time of year. So I hope you see your consultant soon & leave reassured. Xxx |
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By *abioMan
over a year ago
Newcastle and Gateshead |
"I'm unfortunate enough to have a medical condition that leaves my immune system suppressed and barely funtioning. Pre-Covid, catching colds, flu, infections was always a high possiblity but manageable. With Covid, every aspect of life has to be risk assessed...
And now, as you might know, the vaccines have little effect in reducing risk for this group. Personally, it has been a massive set back in trying to get back to some kind of normality.
Would be good to hear from any others that are immunosuppressed / at risk of serious illness from Covid.
How are you coping? Any thoughts you just want to express that you can't elsewhere? Need advice or care share help? "
I have had a blood disorder since I was in
My teens so my immune system is low to shot… there are people out there with it worse than me, but I always have to be careful, example for me a cold some might have for days I could have for weeks… I had a chest infection turn into a pneumonia case so seriously I was hours from going into an ICU.. the normal blood oxygen count is somewhere round 100.. when I got admitted mine was around 60!
I am lucky enough to have had the 2 shots so far, but covid has really made me pick and choose my socialising spots and I have to have a certain amount of trust in people I interact with….
So yes… it’s really frustrating when I see some of the attitude people display in here… way too much “I” and not enough “we”….. because at the end of the day we all get out of this quicker together if we all row in the same direction…. |
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"I have had a blood disorder since I was in
My teens so my immune system is low to shot… there are people out there with it worse than me, but I always have to be careful, example for me a cold some might have for days I could have for weeks… I had a chest infection turn into a pneumonia case so seriously I was hours from going into an ICU.. the normal blood oxygen count is somewhere round 100.. when I got admitted mine was around 60!
I am lucky enough to have had the 2 shots so far, but covid has really made me pick and choose my socialising spots and I have to have a certain amount of trust in people I interact with….
So yes… it’s really frustrating when I see some of the attitude people display in here… way too much “I” and not enough “we”….. because at the end of the day we all get out of this quicker together if we all row in the same direction…."
Thanks for adding to the thread - can definitely relate to most of what you said. Finding people you can put your trust in (and people who even understand your situation) is rare, so good to hear you've been able to do that. Stay safe out there... |
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