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Collecting data on the effect of NAC
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06/12/2007 04:48
wach 

Administrator

06/12/2007 04:48
wach 

Administrator

Re: Collecting data on the effect of NAC

Thank you for your comment, Dirk! Assuming that you might require 500 - 1000 mg NAC/day to get an effect that would mean 1.5 - 3 g Vit C/day. That's probably much more than your body can process. Maybe just some additional Vit C can reduce the risk for kidney stones? But I am not sure whether such an increased risk really exists. If you google for side effects of NAC you find e.g.

http://www.fortnet.org/fapg/nacfaq.htm (not for Dupuytren but side effects ought to be the same)
They don't mention kidney stones and do not recommend to take Vit C at all (though they do recommend other vitamins)

Another web site http://ssl.thebody.com/content/art4754.html reports on patients taking up to 11 g NAC/day (a very extreme amount!) and does not mention kidney stones as side effect. They do mention stomach upset and diarrhea as observed side effects.

I am not an expert on NAC so I can only speculate. But if there would be a high risk for kidney stones I would think that pharmaceutical companies producing NAC would mention that and I haven't found this risk mentioned in any of the lists that I looked at (that doesn't exclude that others report it).

I didn't find a web site of Hyperhealth Natural Health & Nutrition to check their latest statements, they are maybe more into selling their CD. But I found a similar comment on http://www.worldhealth.net/p/aadr-cystei...steine-nac.html : "People with diabetes mellitus and allergies to eggs, milk, or wheat should not take supplementary cysteine. People taking the drug may experience severe headaches when taking NAC. Cysteine supplements must be taken with vitamin C to prevent cysteine being converted to cystine, which may form kidney or bladder stones. People with kidney or liver disease should consult their doctor before taking supplementary cysteine."

Cliical studies don't mention this risk. It might just be a hypothetical one. Personally I don't believe that there is a high risk for getting kidney stones because NAC has been in use for decades and it would have been observed clinically if it is a real risk. But that's my own take and not even a very educated one. But it was good that you pointed it out, it's always good to be cautious.

Wolfgang

Quote:



Hi Wolfgang. My info. came from my local chemist's print out on NAC. From a CD-ROM (Hyperhealth Natural Health & Nutrition). It implies some people get kidney stones from the cysteine. They recommend at least 3 times the quantity of VitC to NAC. ie. 200mg NAC with 600mg of VitC. The symptoms Marjorie has mentioned also follows the possible NAC side effect (in some people) to remove mucous layers in the intestines. I'm still going to try NAC & believe your survey will help in deciding if NAC will be useful for Dup. sufferers despite side effects Regards Dirk


06/14/2007 23:57
Dirk 
06/14/2007 23:57
Dirk 
Re: Collecting data on the effect of NAC

Hi Wolfgang, I agree with your comments. There is a tendency for side effects from drug use to all be reported without giving statical occurance, therefore the proportional risk of use to the individual. Thanks for your additional comments. Dirk

06/15/2007 05:52
macphgw 
06/15/2007 05:52
macphgw 
Re: Collecting data on the effect of NAC

I'm trying this and am in the process of filling out the .doc.

What dose is suggested?

I am currently taking 500 mg morning and 500 mg at night: i.e. 1000 mg a day. The label on the bottle I got suggests 500 to 1500 mg a day (that's) 1 to 3 capsules (without mentioning what one might be taking the stuff for).

The label suggests taking on empty stomach and likewise says take 3 times as much vitamin C. I am continuing with the same amount of vitamin C I have been taking for years: 1000 mg time release with breakfast.

06/15/2007 08:27
wach 

Administrator

06/15/2007 08:27
wach 

Administrator

Re: Collecting data on the effect of NAC

For Dupuytren/Ledderhose no dose recommendation has been established. Therefore the best idea is to take whatever dose is suggested for other use and is considered safe. The 1g / day is in the middle of the 500 - 1500 mg and probably makes sense for a try. I am taking 600 mg because that's what my prescription says but I might double it to see an effect. Obviously there is a wide range of doses possible.

I am not sure about taking it in the morning on empty stomach. Stomach problems have been reported, recently by Marjorie, and my medication suggests taking it after meals.

Wolfgang

Quote:



I'm trying this and am in the process of filling out the .doc.

What dose is suggested?

I am currently taking 500 mg morning and 500 mg at night: i.e. 1000 mg a day. The label on the bottle I got suggests 500 to 1500 mg a day (that's) 1 to 3 capsules (without mentioning what one might be taking the stuff for).

The label suggests taking on empty stomach and likewise says take 3 times as much vitamin C. I am continuing with the same amount of vitamin C I have been taking for years: 1000 mg time release with breakfast.


06/21/2007 02:50
macphgw 
06/21/2007 02:50
macphgw 
Re: Collecting data on the effect of NAC

I have been taking on empty stomach with water and have experienced no problems. In fact, since I started taking it, my digestive system seems to be working better.

07/04/2007 06:16
wach 

Administrator

07/04/2007 06:16
wach 

Administrator

Re: Collecting data on the effect of NAC

Hi macphgw!

Would you mind sharing with us your experience with NAC? Ideally by filling out our form at http://www.dupuytren-online.info/research_funding.html but if you prefer a post in this forum or an e-mail to NAC(at)dupuytren-online.info that will do as well. What we are primarily interested in is
- how your disease looked like when you started taking NAC
- how much and how long you took it
- results with regard to MD and ML
- any side effects?
- still taking it? If not why did you stop?

We will publish a summary of your survey in about 2 months on the above web page.

Thank you for your support!

Wolfgang

Quote:



I have been taking on empty stomach with water and have experienced no problems. In fact, since I started taking it, my digestive system seems to be working better.


07/20/2007 05:10
macphgw 
07/20/2007 05:10
macphgw 
Re: Collecting data on the effect of NAC

I got held up filling out the survey because I didn't know the angles and the joint names - still don't. As far as I can recall it, my history is something like this :

A doctor first diagnosed my dupuytren's in 1970 when I was 23 years old. At that time I developed a couple of palmar nodules. The disease progressed slowly until around 1980, when it spread to the little finger of my right hand.

Around 1985, I had my first surgery: angle of contraction of little finger was about 90 degrees. The surgeon (a general plastic surgeon, did not do a good job: the incision was messy and there was a lot more swelling than with subsequent surgeries performed by a skilled surgeon whose specialty was hands. There was some temporary improvement in the angle of contraction. I bought a spring splint and attempted to straighten the finger by fairly intense and prolonged stretching, which I now believe may have had a further negative effect. The finger quickly contracted again and the ring finger of the same hand became involved.

As the disease progressed rapidly during the late 80's I subsequently had 2 or 3 more surgeries on the right hand and the little finger and palm of the left hand. These surgeries were more successful: little finger of right hand was eventuallyamputated, ring finger is contractedat about 20 degrees, but appears to have no dupuytren's tissue, middle finger has been contracted at about 25 degrees after first band was removed) by a second band. There has been no noticeable change in my right hand in the last 15 years.

After the surgery on the little finger of my left hand, I soon developed a band in the index finger, which contracted the middle joint to about 30 degrees. It stablized there until several months ago. The other 2 fingers have remained free of the disease.

Several months ago I suddenly developed a neuropathic condition in my left hand. I lost strength in the ends of all my fingers: I could not grip things between finger and thumb, did not have enough strength to operated a finger nail clipper. I aslo lost coordination: fingers would not go where I was attempting to put them. Strength of my grip when using my entire hand was not affected.

I now have most of the strength back in my fingers: it started returning slowly after I started devising and doing strengthening exercises. But during this recovery period, the duputyren's in the index finger got worse. When I measured it near the beginning of June, the angle was 60 degrees.

I started taking NAC on June 6 after reading about it on this forum. I have not checked the contraction angle since, but I don't think it is any worse.

I don't have any opinion about whether the NAC has had any effect. Most days I take 1000 mg. Some days only 500 mg.

My goal is to stop the progression until the autumn when I am hoping that my surgeon will start doing NA.

07/20/2007 19:08
Randy_H 
07/20/2007 19:08
Randy_H 

Re: Collecting data on the effect of NAC

"My goal is to stop the progression until the autumn when I am hoping that my surgeon will start doing NA."

It would be *great* if your surgeon would start doing NA, but if he did he would be among the rare breed that has a hugely open mind. What indication do you have that he will? NA is counter intuitive to a highly trained surgeon who makes his living being able to *see* what he cuts. The success of NA rests on the feedback loop of the patient telling the surgeon that his needle to getting too close to a nerve. Without that, nerve damage would make NA far too dangerous. Problem is, most CHS don't "get it" and are sure NA *is* in fact dangerous. This in spite of Eaton/Denkler/Press proving otherwise at their own convention.

But, as you clearly report, OS is a bit dangerous too. What surgery does have going for it is an expectation of less recurrence than NA because it removes all the diseased tissue. But again, data shows that over ten years the chance of recurrence with OS is still way over 50%.

You have been through the ringer with this disease macphgw . Unfortunately NA is difficult to penetrate scar tissue form previous surgeries. However, Dr. Dinkier (CA) is experimenting with a combo of very limited OS to reach the desired area under scar tissue, and *then* NA to release the cord. Good success so far.

Collegenase is years away still, but it should be widely accepted. Why? Simple. CHS don't have to cut something they can see, which NA on the other hand requires. Meanwhile you may need a plane ride and an overnight to do NA. Frankly I'd giver it a chance before doing more OS. Best of luck.

Edited at 07/20/07 22:10

07/21/2007 22:32
macphgw 
07/21/2007 22:32
macphgw 
Re: Collecting data on the effect of NAC

I sent my surgeon an email at the beginning of June and got a reply that he was going to the hand centre in Florida to evaluate the technique. If satisfied, he will then offer it.

07/21/2007 22:44
macphgw 
07/21/2007 22:44
macphgw 
Re: Collecting data on the effect of NAC

Also, with this surgeon, I have had little problem with recurrence in the areas he has cleared. But I have had problems with the disease spreading following surgery, to the other side of the finger when a band on one side is cleared and to an adjacent finger. I have never had a recurrence in either palm or in the little finger of left hand or ring finger of right hand after both sides done. However, all of the fingers that have been operated on and no long have dupytren's tissue, still have some degree of contraction, loss of flexibility when stretching the fingers apart, and the little finger of the left hand has some flexion loss as well in the end joint. The attentuation of function is more a problem for me than the contraction. I play guitar and my technique has become more restricted as the disease advance (nonetheless my playing has improved).

What I want now is to preserve function, or else I'll have to learn slide guitar.

The finger on which I want NA has never been operated on before and has a single, clearly defined (though thick) band. I'll be very happy if I can cut the amount of contraction by half without incurring any other functional loss.

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N-Acetyl-Cysteine   surgeon   effects   stomach   dupuytren-inline   Dupuytren   N-Acetyl-L-Cysteine   contraction   supplementary   Collecting   recurrence   0-CLOSE-MATCHES   N-Acetylcysteine   eventuallyamputated   Marjorie   disease   Acetylcysteine   Vitamin   Wolfgang   dupuytren-online