Anyone else have the same dilemma? - Vasculitis UK

Vasculitis UK

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Anyone else have the same dilemma?

Galaxy2 profile image
11 Replies

I'll be really interested in how others are dealing with family members going to work/school in the current climate.

I am on rituximab and created no antibodies after my first vaccine so not hopeful I have much protection, if any against covid at all. My daughter's school have such a high number of cases at the moment so neither of us are comfortable with her being there but she has now missed the first month of the term as a result. The school won't allow her to work online as the government wants all children in school and say their hands are tied, as sympathetic as they are. With the news last week of the alarming rates of secondary school children contracting covid I just don't know what to do. I don't want her to suffer as a result of my health which she undoubtedly is, but then the thought of her catching covid and passing it on to me is just so worrying.

I really feel we are a forgotten group, its all very well the message that 'we just have to learn to live with covid' but it just seems there are no provisions being made for those who are vulnerable and had a poor vaccine response and the impacts too on those we live with and the sacrifices they are having to make.

We live in a flat so really hard to live separately too within our home, but really interested to know how others are coping with similar scenarios

Thanks all

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Galaxy2
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11 Replies
SheffieldJane profile image
SheffieldJane

You are due a third jab which will improve your immunity and then a booster as well. Talk to your GP about getting it done soon. Just strict hygiene in the home, school clothes off when she gets home. What else can you do really? I keep my bedroom windows open always.

Galaxy2 profile image
Galaxy2 in reply to SheffieldJane

Thanks, I've not long had my most recent rituximab so am having to wait a while for my third jab, will be good to get it though

eh66 profile image
eh66

You have a very difficult situation, however bear in mind that antibodies are not the only protection against Covid and other infections. T-Cells also provide a high degree of protection. pennmedicine.org/news/news-....

eh66 profile image
eh66

I am double jabbed but have no real idea what my immunity level. I try to to boost immunity as much as possible through my diet and exercise. I take a multivitamin every day. I also take a fair bit of fresh fruit and veg usually involving a home made smoothie for lunch containing Actimel (or similar), apple, (other fruits (frozen in winter); strawberry, pineapple, blue berry etc), banana, spinach, oat bran, and milled flax seed. It is a slightly odd texture/flavour but you get used to it. The point is you get a lot of different unprocessed items that are easily consumable but you have to experiment with what works for you. This variety boosts your gut biome and hence your immunity - Prof Tim Spector at Kings College, London is the expert on this.

I also try to exercise where possible most days (where my body lets me); bike rides, walking the dog, calisthenics, stretching etc The fitter you are the less impact Vasculitis has on your life, and probably Covid too.

Galaxy2 profile image
Galaxy2 in reply to eh66

Thanks for this, I try my best to do what I can. Yes hopefully we all some some protection through our jabs if not by antibodies

AmyS1 profile image
AmyS1

I have 5 children aged teens to early 20 at uni/ school coming and going. I am on 3 immunosuppressive medications including infliximab. The crucial thing is your daughter should have already been vaccinated as a household contact of someone who is Immunosuppressived , she can then go yo school. You also need your third primary dose and a subsequent booster your GP should be aware of this it is all in JCVI.

Galaxy2 profile image
Galaxy2 in reply to AmyS1

Thanks Amy for your reply, there was such high number of cases right at the start of term and many in her friendship group and I had only just had my recent rituximab so I was very wary. Just had my third dose though so a but more reassured.

Starray profile image
Starray

Hi Jenny, I’m on the same meds as you. Both my age eligible children have now had both Covid jabs. They’re 12 and 14. This has reassured me a bit. Obviously, my 10 year old hasn’t. I’ve had my third jab luckily one month before my Rituximab is due. It is all very worrying. I’m off with long Covid at the moment but will have to return face to face as a teacher when I recover which is also very worrying. Good luck.

Galaxy2 profile image
Galaxy2 in reply to Starray

Thank you, I've just had my third jab, I had to wait because I only had my last rituximab in August. I do hope you feel better soon.

Investigator1 profile image
Investigator1

Hi Jenny

I am on Rituximab, and from Day 1 of the Pandemic my GP, nit my specialist told me in no uncertain terms that my wife was my route to Covid and she must either work in isolation or from home. She worked in a Department Store as a manager and lockdown happened so the store was closed and she was furloughed. In June 2020 when the first lockdown ended my specialist and GP wrote to her Director with the same controls to be followed. They point blank refused stating I was not their employee so not their responsibility (under H&S law I am). My wife was so worried because they were so lax about Covid so after 6 months on SSP she resigned. She got another job in retail but her new employer was so understanding and goes out of their way to ensure staff safety. We are weary but not worried. Rapid flow tests every 3 days and living with it.

Just a note: My Specialist says that trials are underway to test reaction to Covid for Vasculitis Patients because there is now a theory that some may only have mild symptoms because those who have low white blood cells because of treatment dont give the Covid Virus what it needs. I don’t know but interesting.

Galaxy2 profile image
Galaxy2 in reply to Investigator1

Thanks Nick for your reply, very hard isn't it because we can't stay locked away for ever. An interesting trial, will wait to hear more about that one

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