Sjogren's Syndrome


NAC

N Acetyl Cysteine (N-acetyl cysteine is used to counteract acetaminophen (Tylenol) and carbon monoxide poisoning... chronic fatigue syndrome (CFS); an autoimmune disorder called Sjogren’s syndrome... radiation treatment; increasing immunity to flu and H1N1 (swine) flu; and for detoxifying heavy metals such as mercury, lead, and cadmium.

A double-blind, cross-over, study of oral N-acetylcysteine in Sjögren's syndrome. Abstract: Twenty-six patients with primary or secondary Sjögren's syndrome were treated in a double-blind, cross-over trial for a four week period with oral N-Acetylcysteine and placebo. Before treatment there were significantly elevated salivary lactoferrin levels in the patients when compared to 51 healthy controls (p = 0.0005), and significantly decreased levels of tear lysozyme when compared to 24 controls (p = 0.0003). Salivary sodium, potassium, inorganic phosphate, amylase and immunoglobulin G, A or M levels were not significantly different from control values. After treatment with N-Acetylcysteine, Sjögren's syndrome patients reported improvements in ocular soreness (p = 0.004), ocular irritability (p = 0.006), halitosis (p = 0.033) and daytime thirst (p = 0.033). N-Acetylcysteine, but not placebo improved the van Bijsterveld score (p = 0.026), but neither agent improved the Schirmer test, the tear break up time or any of the laboratory tests. These results suggest that N-Acetylcysteine may have a true therapeutic effect on the ocular symptoms of Sjögren's syndrome and be worthy of a longer study.

Sjogren's World Forums--Global Moderator comments I have been doing a lot of research on NAC or N-Acetyl Cisteine. This is a specially modified form of the dietary amino acid, cysteine.

I have a sjoggie girl friend who also has COPD and has had a lot of exacerbations and almost died several times. This last time she was in Rochester, MN hospital and seen by Mayo doctors. The pulmonologist who treats her put her on prophylactic antibiotics (finally) and N Acetyl Cysteine.

This OTC amino acid is something that is already in our body. She takes 1800 mgm a day and has not been in the hospital in the year since she started it. She says that her thick mucus is much thinner and she is able to cough and keep her lungs more clear.

This coughing up of the thinner mucus has increased her exdrcise tolerance because she is able to breath better. She has not had any infections in her lungs either. She also has a low immune system and is high risk for infections so she feels that if she was on the antibiotics alone the infections would still be coming.

Sooo, with my COPD hubby who follows pretty much the same type of infections exacerbation routine that she did in the past, I decided to see what I could find. There is some information out there about using NAC (short term) for pulmonary fibrosis. This is what many people with sjogrens get, so I consider this an important piece of information.

I think we need to do the research and talk with doctors about the use of this drug. The pulmonologist wants my hubby to start on Daliresp, which is a new FDA approved drug for the treatment of COPD. This drug seems to work fairly well, but there are a lot of side effects and many of them are pretty severe.

My hubby is going to have to make a choice between which of these meds he will take. I have read some COPD forums where people starting on the Daliresp only were able to take the med for a couple of days and the side effects were so miserable that they quit. One person said that if they could move the TV and computer into the bathroom that life would have been more fun. They said that sitting in the bathroom all the time (with diarrhea) is totally boring. I guess the diarrhea generally leaves if you can hang in there.

Just thought this was worth bringing to your attention. I don't know about eye dryness issues, but there was one post I read that mentioned some mild help with eyes and mouth. Would that not be the most wonderful thing if this would pan out. Good luck all.

Oh, I looked the drug up on Puritan.com and it ran like 20 bucks for 240 tablets so not such a bad price.

Reply from member: Warning! Cysteine is life threatening for diabetics.

I took one dose. I ended up in the ER on deaths door. The doctor told me that this is what happens to type 2 diabetics when they take this. I do not want any one to go through what I did.

Reply from member: Fortunately I'm not diabetic.

I've been taking NAC for about 4 years now, recommended by my otolaryngologist for Menieres, which he thought might be the cause of my hearing loss.

Last fall, the hearing returned almost completely in the ear with the loss that drove me to hearing aids.

Needless to say I take NAC daily.

Maybe it had nothing to do with the change, but it was a shock to have hearing RETURN after over 4 years of loss and the struggle and expense that goes with it.

Reply from Member: My Sjoggie girlfriend who is taking the NAC also has type 2 diabetes and is on Metformin. Her pulmonologist at the Mayo Clinic put her on the NAC so maybe he knows something the rest of us don't.

N-Acetyl Cysteine (NAC) Optimal levels of NAC have not been determined. The amount used in studies has varied from 250 to 1,500 mg daily.

Some research has also suggested that NAC may be helpful for Sjogren’s syndrome49 (a disease that causes dry eyes, among other symptoms), (49. Walters MT, Rubin CE, Keightley SJ, et al. A double-blind, cross-over, study of oral N-acetylcysteine in Sjogren's syndrome. Scand J Rheumatol Suppl. 1986;61:253-258).

For much more, Google "N Acetyl Cysteine and sjogren's"


Colby Glass, MLIS, Professor Emeritus