Anyone tried sterols & sterolins (e.g. "Moducare")?

[tilldawn]

They say sterols and sterolins help to regulate immune function and good for lupus. I'm intrigued but a bit scared... Any inputs will be highly appreciated. Thank you!

[SarahHeney]

Ive never heard of them! Intrigued so will google x

[tilldawn in reply to SarahHeney]

Hi SarahHeney, thank you for your comment! Did you google it? What do you think? As I wrote in my reply to MaggieS, I think I will have a go! I will update you in due course...

[Hidden]

I hadn't heard of this either, but have now been to the website and looked at the evidence. I would tend to mistrust research funded by the industry that makes the supplement - and if you scroll to the end of three of these articles you can see that this is "partially' the case. Two of the four articles are identical and one is about breast cancer - and concludes that sterols MIGHT be a useful preventative.

Aside from this - as someone who for several years subsisted on the fiction that I was controlling my lupus with "natural" remedies, and who has tried many alternatives to the drugs on offer at the Rheumatology clinic, I would be very cautious about this supplement. I have used phytosterols (which this product seems to be), and found that they exacerbated my symptoms, if anything. They certainly didn't have any hugely beneficial effects. Try it, by all means, but consider it an experiment - and be prepared to get worse as well as better and have to stop abruptly.

When we are ill we are desperate and will clutch at the shortest of straws....

[tilldawn in reply to Hidden]

Thank you so much for your informative response, MaggieS! It's a good point about the articles, thanks.

I have heard that sterols only wouldn't work as taking together with sterolins. I read your reply for a couple of times and now I think I will try it with the maximum caution. Than you very much again!

[Purpletop]

There have been and still are, millions of dollars spent in research for a drug on how to regulate the immune system for lupus - without much success, we are still relying on a handful of meds that were developed decades ago. Had it been that easy - use sterols- there would be no lupus sufferers today. Try to put this into perspective a little - I'm not saying don't try it but don't expect it to improve your symptoms that much either.

Personally I am wary of natural remedies targeted to the immune system - our immune system is already up in arms attacking randomly, putting something on top of it that we don't really know how it works might make it worse.

Try and discuss it with your consultant - he/she will be the ones that will deal with problems arising from your taking this (if any), it is best he/she is aware.

Take care.

[tilldawn in reply to Purpletop]

Thank you very much for your response. Sorry for the delay - last couple of days have been tough... bit recovered over the weekend.

I really appreciate your comments and I believe I understand what you are saying. I'm not believing this will cure lupus and I'm not putting steroid away. My intention of asking here was more to know about negative reaction.

As it seems I've started another little flare-up at the moment, I will wait a bit but I think I will have a go once I get ready (incl. let the doctor aware). Thank you very much again for your inputs!

[lulume]

I had previously been on immunosuppressant for 3 years before the Lupus went into remission. It took a few years before it flared up again. When it did, I did not want to take immunosuppressant again, so tried the Moducare after having had joint pains and fatigue for 4 months. I was amazed it took just days for everything to subside and a couple of weeks to settle. The immunosuppressant was definitely not as effective for me, having taken almost 2 years to get the Lupus under control and then another year to be weaned off it. I now use only Moducare to keep the Lupus at bay. Fortunately, I don't have many flare-ups. However, I must say I have found some brands of Moducare to be more effective than others. One brand in particular (I think it was Vivitas) did not seem to work as well for me. There is one brand that worked really well for me, butI cannot remember the name. I will see if I can identify it. By the way, I believe you can take the Moducare with the immunosuppressant, but I would suggest you consult with a good Naturopath on this point.