No black Elderberry for autoimmune condition???

Posted by fdixon63 @fdixon63, Sep 7 2:16pm

I've been taking black elderberry syrup because it is more alkaline — trying to avoid acidic fruits, etc. I had to buy one today that is a different brand. In reading the side of the box it says "Caution: Not recommended for individuals with autoimmune conditions." I have LP which has exhibited in gums, vulva, legs, and feet at various times over the years. I can't see that it is causing an increase at all and wondering if others with LP know any more about this warning.

@fdixon63, It's good to do your research on supplements and also discuss them with your doctor or a pharmacist along with any conditions or medications you may be taking. I'm hoping members with knowledge or who are familiar with black elderberry syrup may be able to offer some information. Here's some information I found that points out some pros and cons along with some warnings but the warnings are for the seeds and leaves and not a processed product.

Elderberry: Benefits and Dangers: https://www.healthline.com/nutrition/elderberry

Have you discussed the warning with your doctor or a pharmacist?

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Hello @fdixon63 you have also mentioned that you suffer from LP. I’m going to ask @artist01. @bustrbrwn22 and @microgirl if they have had any problems with elderberry syrup and LP.
Are you currently being treated by a physician for LP?

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@becsbuddy

Hello @fdixon63 you have also mentioned that you suffer from LP. I’m going to ask @artist01. @bustrbrwn22 and @microgirl if they have had any problems with elderberry syrup and LP.
Are you currently being treated by a physician for LP?

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Yes I have a dermatologist. Next appt. is Sept. 20th. I'll discuss then.
Thanks.

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@johnbishop

@fdixon63, It's good to do your research on supplements and also discuss them with your doctor or a pharmacist along with any conditions or medications you may be taking. I'm hoping members with knowledge or who are familiar with black elderberry syrup may be able to offer some information. Here's some information I found that points out some pros and cons along with some warnings but the warnings are for the seeds and leaves and not a processed product.

Elderberry: Benefits and Dangers: https://www.healthline.com/nutrition/elderberry

Have you discussed the warning with your doctor or a pharmacist?

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Thanks for the info. My next appt with my dermatologist is Sept. 20th. I'll ask her about it. Unfortunately most doctors shut down when you try to discuss supplements or over the counter meds. I somewhat understand because they don't have that training in medical school.

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@fdixon63

Thanks for the info. My next appt with my dermatologist is Sept. 20th. I'll ask her about it. Unfortunately most doctors shut down when you try to discuss supplements or over the counter meds. I somewhat understand because they don't have that training in medical school.

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@fdixon63 Hi – I hadn't heard of elderberry for my Oral LP. My dermatologist is very open to discussions. We do converse about medical abstracts either of us have seen regarding LP in all of its forms. I see him next on Oct 5 so will ask about this. My caution to you would be (as I learned painfully with having LP in almost all of its forms) is that what might not bother you now, may down the road, even a year or two so please be cautious.
*****May I ask why you are taking it? Do you have active/open lesions or are you using it prophylactically?*****

We're all in this LP war together!

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Sorry if there is confusion on why I'm taking black elderberry syrup. Because acidic fruits (i.e. oranges, pineapple, etc.) seem to be a trigger for my LP I began to seek something that might be more on the alkaline side. When I found out that elderberry was more alkaline, I discovered it was a good immune support product. I've been using it for several months now and I do not see any evidence that it causes any issues with my LP. I also have a chronic lung disease and am always looking for things to keep me as healthy as possible so… This forum is great and I thank everyone for their input.

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@fdixon63

Thanks for the info. My next appt with my dermatologist is Sept. 20th. I'll ask her about it. Unfortunately most doctors shut down when you try to discuss supplements or over the counter meds. I somewhat understand because they don't have that training in medical school.

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@fdixon63 Hello. I note that @becsbuddy has mentioned me to you. I've had OLP since December but have never used Elderberry Syrup. As @johnbishop has told you in his message to you, I would strongly caution you against using it, for the same reasons that John noted. My dermatologist prescribed Clobetasol 4 x per day, and then raised that to 6 x per day. When that failed, he prescribed Protopic Ointment 2 x per day and I'm pleased to say I no longer have pain, and the mouth lesions are going away.
I hope your dermatologist appointment goes well and you get some good advice.
My personal opinion is that I would NOT take a chance on using Elderberry Syrup for your autoimmune LP, just as the warning on your Elderberry package states!
Good luck! Laurie

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I’ve read that elderberry, as with other herbal immunity boosters, can interact with immunosuppressive medications. If you are on a DMARD, this may be true. As I’m on immunosuppressive meds, I no longer use elderberry or other herbal immunity builders.

However, WebMD has this:

“Autoimmune diseases" such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), or other conditions: Elderberry might cause the immune system to become more active, and this could increase the symptoms of autoimmune diseases. If you have one of these conditions, it's best to avoid using elderberry.”

So, best to check with your physician.

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@athenalee

I’ve read that elderberry, as with other herbal immunity boosters, can interact with immunosuppressive medications. If you are on a DMARD, this may be true. As I’m on immunosuppressive meds, I no longer use elderberry or other herbal immunity builders.

However, WebMD has this:

“Autoimmune diseases" such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), or other conditions: Elderberry might cause the immune system to become more active, and this could increase the symptoms of autoimmune diseases. If you have one of these conditions, it's best to avoid using elderberry.”

So, best to check with your physician.

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Thanks for this information. I have lichen planus. I've been taking the elderberry for months now and I see no indication of any "flares" so I think it is not having an adverse effect to my condition.

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I have heard this too. I feel like its better to be safe than sorry..

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@fdixon63

Thanks for this information. I have lichen planus. I've been taking the elderberry for months now and I see no indication of any "flares" so I think it is not having an adverse effect to my condition.

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I’m glad it’s been successful for you. Before my transplant I did take it all the time and seemed to work well to ward off colds. It grows in Vermont, so lots of local tonics available.

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@athenalee

I’m glad it’s been successful for you. Before my transplant I did take it all the time and seemed to work well to ward off colds. It grows in Vermont, so lots of local tonics available.

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Thanks for your comments. Pray you do well going forward with your transplant.

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