Is Collagen beneficial in SLE?

[patientpat]

hello,

I understand that Lupus can attack Collagen in the body. I was wondering if taking a Collagen supplement might make my SLE worse or indeed better. ?

Has anyone has any experience of this either way.? Thanks

[LalSD]

Hi Patientpat,

In case the feedback is limited or not positive, I use homemade bone/meat broth (boiled with few onions and a small tablespoon of vinegar and some salt to taste, to kill the smell and germs) and drink the juice once a week (ckooking for 5-6 hours slow heat or pressure cooker 1.5 hours). I know it is troublesome to cook it but it helped my joints greatly until recently before I got stuck with a shortage of my medication due to complications with GP ad hospital etc. I pour in to a coffee cup and if jelly like, mix it with water and sometimes freeze it for future use. Please try it if collagen tablet is not an option. Of course, this is only if you are not vegetarian. Hope this helps, xx

[happytulip in reply to LalSD]

I always roast my bones first for added flavour. And sometimes put some oxtail in for extra flavour but I boil mine for 12 - 24hrs to get all the goodness out.

[LalSD in reply to happytulip]

Thank you very much Happytulip. Much appreciated. I will try the same. Hope you are well and safe. With love, Lx

[Paul_Howard Partner LUPUS UK]

Hi patientpat ,

It is best to discuss any supplements with your consultant before starting them. They can make you aware of any potential adverse reactions or interactions with other medications you may be taking.

It is important to bear in mind that lupus is a very varied condition and what helps one person may not help another or could be potentially harmful.

[LalSD in reply to Paul_Howard]

Thank you Paul. xL

[svfarmer]

Hi I also take bone broth everyday for the last 4 months and it has really improved my symptoms- I get it off Amazon it’s all ready made so you just mix a teaspoon with hot water and I put half a bovril cube in also - I did try and make my own but it tasted awful x

[happytulip in reply to svfarmer]

Would you mind Messaging me the brand that you use. I like making bone broth but there is alot of washing up!

[svfarmer in reply to happytulip]

Yes of course it’s called Best of the Bone - Bone Broth xx

[happytulip in reply to svfarmer]

Thank you!

[patientpat]

Thank you all for your replies.very helpful. think i will give the bone broth a go. x

[happytulip]

I have bone broth but only in the winter. I can't explain it but my body craves it in the winter but makes my stomach turn in the summer. Perhaps it's when my body needs it the most.

It definitely improves my hair and joints.

Make sure you get good quality marrow bones if you are going to make your own.

And get the butcher to chop them up for you. Mine came looking like it was from a T-Rex the first time!,😃

[patientpat]

Thank you happytulip. I have a habit of eating chicken bones much to the dismay of my family!. i think it might be because they contain collagen.Dont think i could eat a marrow bone tho.

[happytulip in reply to patientpat]

The best bits of the chicken to use are the chicken feet because they contain the most connective tissue etc

[LalSD]

Hi Newby12, I did not suggest it for you to try, my suggestion was to another lupus sufferer. You dont have to eat it or drink it.

[sraines]

Bone Broth is actually a really popular thing. I read about an actress- I wanna say it was Halle Berry- making her own. I read that you should keep it going in a crockpot all the time and switch out the bones every 5 days. You just keep adding water to the pot daily. Idk how you do the refrigeration exactly, so I’d look that up for sure, before using this method. It was recommended to get the bones from a local farm or butcher shop where there’s no bad additives, etc. Anyway they say to sip it throughout the day, everyday. I believe they said you can add onions and garlic as well as whatever fresh or dried herbs you like. Some people can’t tolerate much salt, but there are many salt options I’ve found. Some have less sodium than others. Sounds crazy, but it’s true. I ordered some charcoal black salt flakes and one other black one. Then of course the pink is always a popular choice. Some are actually supposed to be good for you. Finally- I found one brand of pre-made bone broth online that’s supposed to be “the best of the best” and I’ll have to find the brand name and post it later, but like anything else it was not cheap, due to the high quality of the ingredients. It indeed mentioned the chicken feet added to some due to the extremely high collagen in them. I’d have rather not known about his ingredient, lol, but if it makes us feel better, then so be it. I’ve heard wonderful things about collagen for the skin as well. Oh- we found some boxes of bone broth too, that you can get at most grocery stores, right by the other boxed broth products. I add granulated garlic, and cayenne pepper to mine, with a little crazy janes mixed up salt- in a mug- in the microwave for a couple minutes and it’s really tasty. Some people have learned to switch out their coffee for this healthy alternative. I’m definitely going to do some more research on this. I had kinda forgotten about it. I’ll also try to see what vegetarian and vegans may use that has collagen. Not quite sure on that. Anyway- sorry this was so long, but I really think it may be quite helpful. One thing I recall is that they all aren’t the same and that they really need to be of a more jelly like consistency when they get room temp or cold. Otherwise they may not do much good. Best of luck! Prayers to you all. 🙏

[miccika1]

Im glad i didn't read any bad reviews as this is just what I started to take as an experiment mainly because there is a claim that collagen helps with guts, specifically leaky gut that some people think influence lupus. I was taking agar agar which is a vegetarian version and so far i didbt notice anything bad but i also didn't notice any benefit yet. I will keep taking it for a month and then reevaluate. I usually search online for any lupus or medication interaction and didn't find anything bad so far for agar agar

[Hamptons]

Hemsley and Hemsley are health gurus that recommended bone broth a few years ago. Think they had a recipe to make it tasty.

Interfering about the link to leaky guts.

Well, I may try it, it the boiling down as that’s bad enough when I make soup. But the add water and stir sounds fab.

[happytulip]

It's all about the gut biome.....

[patientpat]

Thanks to everyone.Cant get the bones just yet to do the broth so i've bought an organic marine collagen with type 1 to 3 collagen. Apparently there are a few other types which target different areas of the body.

I will see how this goes and then try one with the bone broth added.

If it helps improve my condition i will get back to you.

[patientpat]

hydroxycholorquine 200mg daily and Aspirin 75mg daily plus Naproxen/Omeprazole.

[patientpat]

thanks newby12

[Nurse22]

I stopped taking the Lupus drugs over 5 years ago. I also have rheumatoid arthritis and chronic inflammation in my joints. I started taking collagen about three years ago. It seems to cool the inflammation in my joints and decrease the pain. i will definitely continue to take it because it seems to make a difference in my comfort. I use Great Lakes brand, Collagen hydrolysate and order it from Amazon.

[patientpat]

Thank you nurse 22.i will look that one up. always nice to have a recommendation as so many on the market and very confusing.