Immune system - confused 😵

[cathylou]

I cannot wrap my head around immune systems. I know my immune system is attacking 'self' and targeting certain areas but that's as far as i get! My daughter had a sire throat and snuggles but i have caught it and am officially declaring 'man flu '🤒

I am not on immunosuppressants so why do I get everything worse than others? Literally struggling to breathe, feverish etc! I'm just waiting for the chest rattle of yet another infection. Drs always presume I'm asthmatic but i have no issues with my chest until i catch a cold. My joints are agony but not swollen so GP won't be concerned.

My question is, do I want to boost my immune system with vit c etc or will it make the lupus worse? Or is that exactly what I need?

sorry for the long winded post, i needed a good moan! Haha!

xxx

[inkedup9]

Having looked into it a bit, there seems to be 2 schools of thought. I never get any infections with 4 autoimmune conditions, as my immune system is in overdrive, therefore I feel like I need anti inflammatory support. I have also read that if the immune system is in overdrive that you need to support it. Therefore if I don't get infections I'm in anti inflammatory mode. It sounds as if you need to support yours, as you are getting infections.

[weathervane]

When my white cell count was very low i got a nutribullet and blitzed kale with frozen fruits and fresh fruit and maybe spinach. My wbc came up ( could not get disc surgery until it improved ) i done know if it was The drinks or not . I couldn’t taste the kale or spinach just the fruit so they were very tasty. I also take multi vits with zinc , vit c and selenium. I hope you feel better soon 😀

[whisperit]

It's a puzzle, isn't it? There does seem to be a consensus that Echinacea is contraindicated in lupus as it does seem to produce a measurable increase in immune system activity. Conversely, Vit D and Vit B seem to be singled out as good guys - including supplementation if necessary. But there doesn't seem to be such as strong message around Vit C; looking at past threads here, a few say that their rheumy has warned them off Vit C supplements, but the general advice on nutrition offered by both Lupus UK and the Lupus Trust encourage us to make sure we get Vit C as part of a healthy diet. So...um.....x

[cathylou in reply to whisperit]

thanks for the reply. I feel less stupid now as its obviously as complicated as I first thought! Haha!

[Barnclown]

Am totally relating to your confusion! My lupus was diagnosed when i was an infant, but went without daily meds until my 50s (long story). Instead i concentrated on “healthy eating” with the sort of supplements mentioned in the other replies you’ve had. I always seemed to have more respiratory & UTI infections than anyone i knew

Finally things got so bad that my lupus was rediagnosed, Now I’ve had 7+ years here on forum getting my head around my version of lupus, i kind of “get it”. Main thing is, my rheumatology clinic Lupus consultant really does “get it”, cause she has gradually figured out the combo of daily meds that REALLY is helping me now! I told her that have always been prone to recurring & persistent multisystem infections - and that this started way before i was on immunosuppression meds around 7 years ago.

Well, now i’m almost infection-free because a few years ago, my lupus consultant realised my immunoglobulin levels were below normal reference range, so she referred me to immunology where i was diagnosed with an early onset immunodeficiency disease running alongside my lupus: how contradictory is that?!

Anyway, my rheumatologist & immunologist work together to keep my simultaneous autoimmunity & immunodeficiency well medicated and under control. So, it’s a long shot, but might be a good idea to ask your lupus consultant whether your blood immunoglobulin levels have been tested (specifically immunoglobulins G, A & M)...if these are low, this could help you and your doctors better understand your infections.

Hope you’ll keep us posted 🍀😘🍀😘 coco

[cathylou in reply to Barnclown]

thanks for your reply, I think it is just something I need to talk to my Dr about x

[Barnclown in reply to cathylou]

Good plan! I added & changed a bit in my reply just now...which may be more useful to you as a result: am v much relating to what you’re going through, so want to give you my best! For what it’s worth 😉. Main thing is, you’re getting the hang of this diagnostic process and how you can best collaborate with your medics to help them help you. I’m so glad you’re here. Take care 👍🤞🍀😘

[Paul_Howard Partner LUPUS UK]

Hi cathylou ,

This is a very complicated area and we don't yet have satisfactory answers to all of the questions.

It is not uncommon for someone with lupus to experience more severe and prolonged symptoms from a viral infection that someone who does not have lupus. There could be a couple of factors involved in this. 1) In some people with lupus, their immune system can actually target some white blood cells as part of the 'friendly fire'. This can mean that you are less able to fight off infections. 2) Lupus flares can be triggered by a number of factors, including stress and infections. Therefore, some of the symptoms you may be experiencing could be the lupus flaring up rather than the virus itself. It can be very difficult to distinguish which.

On to your question about whether you want to boost your immune system or not; There are certain remedies that you probably should avoid. As whisperit has already said, echinacea is one of these as it has been shown to potentially trigger lupus flares in some people. The advice is generally for people with lupus to have a healthy, balanced diet with lots of fruit and vegetables to get the vitamins and minerals they need to stay healthy. I attended a lecture by a hospital nutritionist about lupus and diet and they said that you shouldn't avoid vitamin C because it plays an important role in the body and helps to regulate the immune system. What I will say though is that it is best to get your vitamins and minerals naturally through your diet, rather than taking vitamin tablets and supplements.

[cathylou in reply to Paul_Howard]

thank you for you reply. It's starting to make more sense now x