Do any of you take a form of Echinacea?

[Lisalou19]

Was told today this can help stabilise the immune system. I will try most things but never heard of this x

[Wendy39]

I have read somewhere that we are supposed to avoid this. It’s very potent. It stimulates the immune system but with lupus our immune system is already over active. If I find where I read this, I’ll let you know. I hope you get some replies from others more helpful than me! x

[Lisalou19 in reply to Wendy39]

Your reply is very helpful. I had read before that our immune systems are over active and that we don’t need to stimulate it or strengthen it, so your reply is very valid.

X

[panda2 in reply to Lisalou19]

Hi Lisalou,

I've had advice just like Wendy has mentioned.

At my first consultant appointment regarding connective tissue disease, I was told not to take ANY supplement/holistic medication because of its interaction with the immune system. Echinacea was mentioned in particular because of its affect on the immune system.

Px

[Lisalou19 in reply to panda2]

Thank you. I’m glad I check these things out on here 🤗x

[EOLHPC in reply to Lisalou19]

I agree with wendy & panda. You are so right to check these things here...and my lupus clinic always urges us to check with them too.

During the decades before my infant onset lupus diagnosis was recovered, complementary therapists were urging me to take echinacea due to my characteristic multisystem persistence pattern infections. Echinacea is said to stimulate the immune system which is meant to help fight infection

But i didn’t take echinacea simply cause i had a weird 6th sense that something spooky was underlying my lifetime of weird chronic manifestations...and i just didn’t like the IDEA of experimenting until i’d been told WHASSUP...that is: if ANYTHING significant actually was underlying/causing my stuff

Anyway, now my unusual mix of 3 ultra early onset primaries (SLE + Primary Immunodeficiency + hypermobile ehlers danlos) is convincingly + thoroughly diagnosed by rheumatology + immunology...& responding pos to all my daily combined therapy treatment plans, i realise i was probably right not to experiment with echinacea...maybe echinacea wouldn’t have done much harm, but 🤷🏼‍♀️

🍀❤️🍀❤️🍀❤️ Coco

[Lisalou19 in reply to EOLHPC]

I really need to try and help myself . Of course I won’t be putting this in my basket 😑. I’m so fed up with being stuck in this body 🤨. My better days are so rare at the minute, whilst I wait for my 3rd attempt of hydroQ to kick in !!!! X

[EOLHPC in reply to Lisalou19]

😍 am glad you’re here lisalou...if anyone can begin to understand what you’re going through & how you’re feeling, it’s this gang! I feel you’re being V brave & philosophic about surviving the diagnosis & treatment process, but it is V hard on many of us... and, in my experience, this wonderful forum really does make going through this that crucial bit more bearable. It’s really good you’re telling us how you’re feeling...bottling up the suffering & sadness isn’t good! Sending you LOTS of love + a gentle hug 🤞🍀

[Lisalou19 in reply to EOLHPC]

Would be so lost without you guys. The clarity I get from you all enables me to steer away from “its in my head”.

Having a right pig of a time at the minute. It’s not helping because no one offers to take my kids out, so they are sat in doors whilst I lounge around looking like a zombie. I feel guilty for them which in turn doesn’t help lift me up

X

[EOLHPC in reply to Lisalou19]

❤️❤️❤️❤️ even though i couldn’t have children, i do VVVVVV much imagine how HARD this is + feel for ALL you parents with immune dys + conn tiss dis...this life IS ULTRA TOUGH 🤷🏼‍♀️...how could you guys not have guilty feelings during spells when you’re so v poorly...it’s only human...and once you’re on the right treatments things will be happier for you all ‼️

[Lily77]

It was my understanding that echinacea boosts the immune system (often taken during cold and flu seasons) and that those with autoimmune conditions should specifically avoid it because it stimulates an already overactive system. Medications such as Cellcept, prescribed to reduce severe lupus symptoms, are ex organ rejection so suppress an overactive immune system. With very best regards, Lily

[Lupiknits]

Long before I became ill a friend insisted I try VitC and echinacea. I was very cynical but it did seem to shorten colds etc. Wouldn’t touch it now!

[PMRpro]

It certainly says it shouldn't be used together with corticosteroids as they are immunesuppressants and that is something of a contradiction. The same will apply for any similar immunosuppressant medication.

[KatieRL]

Thanks so much for posting Lisalou19. I have only had Echinacea in a herbal tea, but I will definitely check this with my Lupus Dr at my next appointment.

[Cann]

I cannot take it and I believe it is something to do with my blood group. I found from muscle testing that I could not take it and I researched the blood group diet and found that it is not right for mine.

[Bronagh2015]

This landed me in hospital with a terrible flare, it's our immune systems which are the problem so definitely do not want to boost them! 😊

[Krazykat26]

I used to take echinacea before lupus diagnosis. It's derived from a flower which was used by native American Indians n it's a immune system regulator..very useful in healthy people to combat colds n flu ...but autoimmune rs definite no-no!! The last thing u wanna do is stimulate your immune system if it's already overactive!! The flower is called purple cone flower n it's really pretty!! I will also say that I was fit n healthy before lupus came to town..so it does have many therapeutic properties..just not for us!!

There was a Swiss guy called Alfred Vogel who introduced it after having been given seeds by a native American Indian chief..it's still grown in huge fields in Switzerland..Alfred Vogel lived into his mid-nineties..n he was hiking up in the Swiss Alps constantly!! Amazing man!!! I did my 'vogel training' when I worked in a health food shop years ago. Even though the man is gone, his company is still thriving!!

Glad your trying hydroxy again!! Xx

[Lisalou19 in reply to Krazykat26]

Apart from the sore eyes, looking back on when I tried the hydroQ before I had more energy . Fingers crossed by eyes will tolerate it , 3rd time lucky 😎x

[miccika1]

It is contraindicated for lupus. Please don't take it

[1sam]

Are you having problems with cold/ flu ? My rheumy says Vitamin D3 modulates the inmune sytsem... not boosts, just helps to regulate it. Since I started taking it my colds are very mild and rare... talk to your Dr if that is your concern, but please stay away from.boosters such as echinacea.

Hugs!

[Djlr]

We "cannot take echinacea" – it enhances the immune system – that is our problem.

Our immune system is enhanced already - it makes Lupus kick in 😕

hopkinslupus.org/lupus-info...