HELPFUL info summing up the case re lupus patients & flu/pneumonia vaccination

[EOLHPC]

Just read this today...after several years mulling the pros & cons of vaccination over...this seems a pretty good summary to me:

medpagetoday.com/Rheumatolo...

This past year, I've been referred by my Lupus & Vasculitis clinic for investigations by immunology re my early onset immunodeficiencies (these pre-existed my systemic immunosuppressive treatment for lupus)

Recently, immunology told me I created no antibodies to the pneumovax 23 vacc. So now they're trying me on the prevenar 13 pneumonia vacc. And for the first time in 4 + years I've braved having the flu vacc (the last time I had it was the same year my infant inset lupus diagnosis was recovered (i.e. 2011 when i was in my late 50s) and systemic treatment begun with daily hydroxy....at that time a flu vacc segued into a bad lupus flare with osteomyelitis flaring in my upper jaw alongside sinusitis: EEEEK😖😤😰)

Since that horrendous year, I've avoided the flu vacc. Meanwhile, my SLE treatment plan has evolved to include daily myco, amitrip & low dose pred, thanks to rheumatology gradually figuring out the nature of my version of

Immune dysfunction....also, I've continued to need frequent long term high doses of antibiotics (hence the referral to immunology,).

now that my medics understand that I have simultaneous early onset immunodeficiency as well as autoimmune conditions (typically, at 62, my lupus runs alongside sjogrens + raynauds + erythromelalgia + lichen Sclerosus etc etc) I feel more confident that I'm more likely to get the individualised treatment odd ball cases like mine require...and, on immunology's recommendation, I've recently had the first flu vaccine since that dreadful osteomyelitis year, with no probs this time...plus I've let immunology try out these pneumonia vaccines. I feel as if I'm living & learning...alongside my medics....and I appreciate better than ever before how complicated it is to diagnose and treat cases of immune dysfunction

I know I'm not alone in this....hope you find the link helpful

🍀🌻

[Paul_Howard Partner LUPUS UK]

Great article. Thank you for sharing.

[EOLHPC in reply to Paul_Howard]

Glad you like it too paul: helps me feel it's an ok take on this complicated matter👏👏👏

[Hidden in reply to EOLHPC]

Thank you for the valuable info xx

[EOLHPC in reply to Hidden]

Glad you're finding it helpful👍🍀

[AnnNY]

My rheumatologist gave me the flu vaccine, so that was that.

When I had an immune workup, I also didn't have pneumovax antibodies. i was sure I had it, since my last GP was vaccine mad (I used to travel, so I have had yellow fever vaccines!) So I had the vaccine again. I should ask them to check me for the antibodies again, since I have proof now. I had tons of Chicken Pox antibodies which I had when I was three. Funny.

[EOLHPC in reply to AnnNY]

Having antibodies checked never occurred to me...now my eyes are more wide open. If you do get yours checked, hope you'll share the results. My case is causing concern @immunology because this summer after they gave me the pneumovax I didn't respond by making antibodies, which teaches them more about the character of my immunodeficiency, eg indicates that my early onset immunodeficiency may yet prove to be a primary...as I understand it, this would not be happy news, although IViG infusions would be available to me 🍀👋

[Fennella02]

That's a really very good article Barnclown and brooks no argument. Nevertheless, I have not plucked up the courage thus far to have my flu vac done. . . . .

[EOLHPC in reply to Fennella02]

I can totally relate to this...if immunology's investigations into my particular case hadn't helped me feel safer, I'd not have gone ahead last month with my first flu jab since 2011 ....

This reminds me of the bad decades, during most of my life, when it was so clear that my immune system was simultaneously in over drive & go slow...the NHS was telling me everything was 'normal just take more antibiotics', while my complementary therapists were keen to boost my immune system. I had to take the antibiotics, but I was ultra cautious about boosting my immune system...when my infant onset lupus diagnosis was recovered in 2011 I felt as if my basic instincts were vindicated.

The big thing seems to be understanding our individual versions of immune dysfunction as best we can....which is a tough job

🍀🌻

[mirren]

That's interesting on loads of levels .... I work in high risk of exposure to blood borne viruses so am supposed to be vaccinated for HBV, but have never developed any immunity despite several attempts. And I have felt instinctively in the past that I didn't want to have vaccines,so used to always decline flu,chicken pox etc at work. It's funny how we sort of ' know' ....

Part related - after I had pericarditis in January I was absolutely exhausted and off sick for three months, and found myself drawn to certain foods like cashew butter and berries and the like. I think we all have something like pregnancy pica ...maybe we crave certain elements and vitamins and if we listen to our bodies more....the other day I bought b vits, magnesium and cod liver oil and later discovered they are recommended for adrenal fatigue... Pity these elements (nutritional /hormonal) are not seen as a vital part of our treatment...

[babssara in reply to mirren]

Hi Mirren, interesting response to Barnclown's post. Do you have adrenal insufficiency? I do, I bought a brilliant publication, written by an America doctor, Dr Colin Wilson, entitled Adrenal Fatigue, Loads of helpful advice, tick box questionnaire to identify whether you have adrenal fatigue, dietry and self help advice. Wouldn't be without this book.

Babs x

[mirren in reply to babssara]

I don't know that I do, but I think I do, I think possibly we all do? (People with inflammatory disorders) I don't think it's a coincidence many of us got sick after periods of intense stress. That link to cortisol, why we improve on cortisones, its all chain reaction stufff.

I realise some people on here have steroids induced adrenal insufficiency but I think if you have been ill and don't rest or look after your self you are asking for trouble. I will have a look out for that book babs thanks xx

[misty14]

Hi Barnclown

Thanks for very helpful link about vaccination. Very good info. Fingers crossed you don't have a primary immune deficiency problem but good there is treatment. Not nice having it hanging over you!. Keep as well as can be X

[EOLHPC in reply to misty14]

Thanks misty. Your encouragement means a great deal...you've been through a lot of investigation & treatment over many years and really know how all this goes. 👏👏👏👍👍👍🍀🍀🍀

[babssara]

Hi, I'm due to have flu vac next week. I seem to have a problem with antibodies. Is it worth having the vacc, as I also suffer really badly with lung complications? x

[EOLHPC in reply to babssara]

Am only JUST beginning to understand the implications of all this. When I asked immunology & rheumatology if I should get the flu jab this Autumn they said YES. So I did and had only a very mild local reactivity at the injection spot for a few days. My feeling is that you'd do best to ask your medics this question - the consultants who are most alert to your respiratory issues & immune dysfunction. Hope you'll update us re what you do🍀🌻 coco

[EOLHPC]

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