N-ACETYLCYSTEINE REDUCES LUPUS DISEASE ACTIVITY - LUPUS UK

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N-ACETYLCYSTEINE REDUCES LUPUS DISEASE ACTIVITY

RedLizzy profile image
12 Replies

I came across this study in Pubmed about a week ago and decided to give it a try. So far I am about almost one week into it. I do a combination of NAC, 1200mg 3 times daily and one Whey protein shake that gives me the equivalent of at least the additional 1200mg of NAC, so far no GI issues or anything. I have not felt any better or worse, but it is still early days to make any judgement. I know the Mtor pathway can be very potent, having tried a drug called Sirolimus which works along this pathway, it was the best thing I have ever taken for my Lupus/Sjogren's to date. I did not stay on it since I am trying natural products first, if that is not possible then I will go straight to Sirolimus. BTW, I will be putting up a post also on my short experiment with Sirolimus, if anyone is interested in going that route. This is the link to the clinical trial for NAC and Lupus. There is an additional trial going on with NAC for Lupus, just check clinicaltrials.gov link below also. Hope this helps someone into more natural treatments.

If anyone is using NAC for their autoIimmune issues I would very much like to hear about your experiences and compare notes. I will be updating as I progress. Thanks all. Liz

ncbi.nlm.nih.gov/pmc/articl...

NEW TRIAL TO BEGIN

clinicaltrials.gov/ct2/show...

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RedLizzy
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12 Replies
Purpletop profile image
Purpletop

I've never heard of this, thank you very much for sharing with us. It sounds promising and "only" 2 years to wait until the end if the clinical trial.

whisperit profile image
whisperit

Nice! Please keep us posted x

RedLizzy profile image
RedLizzy

I do not intend to wait 2 years, it is a common supplement and I have taken it in the past (1800mg daily), but not the dose they recommend, so now I will try it at that dose since it is safe and see what happens.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toRedLizzy

Hi RedLizzy ,

I would recommend that you check with your doctor before starting this. Your doctor will be able to advise you about any potential adverse effects it could have with your lupus or interactions with any other medications.

RedLizzy profile image
RedLizzy in reply toPaul_Howard

My Rheumy knows I take it, I tell him everything. He is fine about it too, he is very progressive and he knows regardless what he says I will do it anyway if I want. If a clinical trial has been done with good results and safety it is a good bet we can achieve the same results. I don't intend to stay this way, one way or another I intend to dig my way out. If I get burnt in the process so be it, but doing nothing is not an option, I enjoyed being healthy and intend on getting back there again, even if it kills me :)

Liz

Maureenpearl profile image
Maureenpearl

I have been having it on prescription for about three years now. I had to get the prescription from my consultant at the beginning but my gp prescribes it now and I have it as a repeat prescription. I take one tablet three times daily.

RedLizzy profile image
RedLizzy in reply toMaureenpearl

That is good, glad to hear it. How much are you taking and how are you doing at that dose? I guess since you are continuing it it might be doing you good! Let me know more about your experiment. Thank you!

Liz

Maureenpearl profile image
Maureenpearl

Hi RedLizzy, I am taking a 600mg tablet (1tab) three times a day. I haven't noticed it making any difference apart from the lung involvement hasn't deteriorated further but I have been having other treatment. I see a lung consultant and a Rheumathologist together in one clinic and I can't remember which one recommend me taking the vitamins.

My consultants want me to keep taking it and not to stop.

RedLizzy profile image
RedLizzy in reply toMaureenpearl

I am glad to hear that you are getting some benefit from the NAC, but more than likely the dose needs to be higher. You should bring a copy of this study to them and see what they think, maybe they will increase the dose so you can get more benefits.

I am sorry you are having pulmonary issues, I also did about 2 years ago, lots of inflammation on both lungs showed up on the CT scan and shortness of breath, but I started taking a number of natural products, but the one that made the real difference was the probiotic nasal wash using VSL #3. By using it intransally it gets directly to your lungs. I read about it in this study. It is totally safe since people do nasal washes all the time for congestion and sinus issues. I am enclosing a link to a study tht discusses it, read it since it really was very helpful for me and show it to your dotots also, I am sure they will be behind this as they may have used it on other patients for various issues. Hope this helps. Liz

hindawi.com/journals/isrn/2...

KRutherford profile image
KRutherford

Thanks for the info Liz - checking into it and plan to take copy of the study to my rheumatologist. Katie

RedLizzy profile image
RedLizzy in reply toKRutherford

You are welcome, I hope they agree and put you on it. Personally. I think it is starting to kick in for me. This morning I was more energetic when getting up, which has been a problem for me. Let me know if it works out for you. Good luck!

Liz

10Qsister profile image
10Qsister

I have been taking NAC for 2 years only 300m. a day. But why I started taking it is because I was fatigued and my heart would beat fast, I thought I needed to thin my blood..( I was told I was prone to blood clots) and I didnt notice anything after month of taking it...but just about the second month... I began to get much more energy....I was feeling very good after 7 months and so I stopped the NAC...But,I got so fatigued and my joint pain was bad...even in my jaw...Saw lots of doctors and dentist...They all say blood work it fine...teeth xrays all good...but I complained for a year until my dentist rec. told me she thinks its Lupus because she saw this before...I am going to look into it now...But back to the NAC...Im on it again and surely I feel less joint pain..

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