Lion’s Mane and Lupus: Any Experience?

[Shelly1919]

Hey, any experience of taking Lion's Mane supplement or other supplements /foods that are said to be immune-boosting with lupus?

About me: 33yo woman with lupus, in remission for over a year, taking 200mg plaquenil and 5mg prednisolone daily.

I just tried Lion's Mane (500mg) and L-Theanine (100mg) supplements with a cup of coffee to help with focus. Ever since my diagnosis and starting meds in Dec '22, my brain has felt scattered. I've also been dealing with hormonal imbalances, but I feel like this combo is really improving my focus and mood.

I know my kidney doctor is against all supplements except vitamin D and calcium, and I haven't asked my rheumatologist yet (plan to consult)—but this seems like such a small dose.

Would love to hear if anyone else has tried something similar.

[Swildee]

I take Lions Mane capsules for 2 years, I'm not cured, but I just pray they r helping me. My bloods & urine are both fine. I take magnesium too, as I get bad leg cramps & they deffo help. You LISTEN to your own body, if you feel something is going to help you, give it a GO, that is what I do and I'm still here. I have 2 Lupuses, SLE AND DISCOID, as if one wasn't enough. I believe vaccines gave me SLE.

[Ffshelp]

I have no experience but am really interested in this if anyone thinks it’s useful. Good luck with it and please let me know.

[ClassicVintage]

I understood that anything that could cause the immune system to become more active could increase the symptoms of auto immune diseases. Do be careful with supplements.

[Akerfoot]

My understanding is that people with kidney disease cannot take Lion’s mane? It not recommended for people who are immunocompromised - have you been told something different?

[DogHospiceMom]

Dr. Nicole Apelian is a PhD doctor that has a variety of mushroom based products that I use. I also take Neumi Swish which is a liquid glutathione product. They also recently came out with a Neuro product as well as a hormone product I believe. I also use Lifewave Stem Cell patches and an infrared sauna.

[BrigidsFire]

Lupus usually involves an overactive immune system, hence being put on meds to suppress it. I personally wouldn’t take anything to boost my immune system at all. I even avoid eating too much garlic these days.

I used to work in a pharmacy and know there are many contraindications/interactions between “natural” medicines and those prescribed by doctors. Natural doesn’t always mean safe. And a small dose doesn’t necessarily mean safe either.

I would speak to both your consultants before commencing any supplementary therapy, whether that be natural or any other over the counter medicine.

I’m actually a big fan of natural remedies, but would always double check before taking anything new.

[Poshcards in reply to BrigidsFire]

Hi, re Garlic, I went to a Lupus seminar at Nottingham univercity hospital a few years ago and one of the Pharmacy expert talkers said we should avoid Garlic all together

[Carcrashgal]

I have been told - by a number of different consultants over the years - to take nothing other than Vits C and D.