Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Accutane

Hi Steve

Firstly, please excuse the really long post: I'm incapable of being succinct!

Thanks a mill for the feedback. I must say I am REALLY torn at the moment. I am really 'anti-drug' anyway and, as I said above, due to bad reactions I haven't touched anything, not even a paracetemol, for the last three years.

However, having refused and refused to take them, I've finally caved in regarding the anit-TNF drugs (I feel really bad saying that, given all the trouble so many people on this site have had trying to get hold of them, but I was--and am still--concerned about the side effects / the newness of the drug, etc.) which I'll be starting hopefully later this year, and kinda thought, what the hell, in for a penny in for a pound, I may as well try out Accutane while I'm waiting to go on the AS drugs: my dermatologist has also been trying to get me on it for the past five or so years, but I was always really put off by the horror stories about it, though I do have friends for whom it really was a 'miracle' drug. My main motivation in taking it I suppose is that it is really now or never: if I do start Enbrel or Humira and if it does work for me (fingers crossed), I'll potentially be on it for the rest of my life and wouldn't dream of combining it with another strong drug like Accutane.

Although my acne is only 'moderate', it really does get me down and I find it really affects my confidence, so I really want to sort it out.

I looked up the site you recommended and the products certainly do look very good. One problem would be that I am currently based in England, and they do not appear to ship over here (though I might well be able to figure something out on that front). But my other problem is that none of the topical treatments I've been prescribed over the years, many being strong forms of benzoyl peroxide (the main ingredient of these products) has ever made a blind bit of difference, so I'm sceptical about a 'commercial' product having a good effect, though I know, and am very happy, that it is working for you. Had you tried prescribed topical treatments before yourself? Also, obviously, the Proactiv only works on your face, not on your back or whatever, and presumably, if you stop using them, the acne comes back? Sorry about the long monologue, I'm just really thinking 'out loud'...

I've slightly reduced the Accutane dosage while I try to come to a final decision on this. It seems to have slightly reduced the pain, but I can't quite tell yet. The face is however still completely swollen and bright red. I look like an inflated tomato!!

oooooh!! I've just had a better nosey at the site and see that they will ship to England!!

Hi,

I'm glad you're checking out alternatives to accutane. Yes, the Proactiv solution is only practical for use on the face and neck areas. I use it on the back of my neck which used to be a problem area for me. The products do contain benzoyl peroxide but are nothing like any of the over the counter benzoyl peroxide products that you buy in a drug store (and yes I've tried just about everyone of those over the years).

In addition to the two rounds of accutane that I went through, I've tried numerous antibiotics including tetracycline, erythromycin, dynacin. I've been prescribed numerous topical gels and ointments such as retin-A, tamarac, and some type of thick stuff that had to be kept in the refrigerator. Proactiv solution is the only thing that has worked for me. I've never had too much of a problem with back acne but I suppose, with the right brushes or applicators, Proactiv could be used there.

Give it a try, I think they have a money back guarantee if it doesn't work for you.

Good Luck,
Steve

P.S. The image of a swollen red face brought back memories of my accutane days. I also had nosebleeds, dry chapped lips, joint pain, etc. How can something that does that to your body be any good for you?

Hi Steve

Just thought I'd let you know that I've come off the Accutane. The pain was just too bad. I used to think I'd do anything for clear skin, but crippling myself and doing potentially irreperable damage to my back and hips were just one step too far!

I've put in an order for the product you recommended, so fingers crossed. Frankly I'll try anything at this stage... I've even tried this one product called Elicina which is almost 100% the slime from a rare breed of Chilean snails!! (no harm done to the snails in the extraction). It's supposed to work for scars, including acne scarring. I haven't been using it for long enough to notice a difference, but we'll see.

Anyway, I'll let you know if the products you recommended work their wonders for me. Here's hoping...

Thanks again for the advice. It was very much appreciated.

Thanks for the advice... and apologies for taking so long to say so.

I have indeed heard of the starch free diet. I must say when I first heard about it years ago when the pain was less intense, I just dismissed it as I live off potatoes, bread, pasta and rice, and can't see what I'd eat without them... However, I now think I might attempt to give it a try.

I find some of the info on what exactly you can and can't eat a bit confusing, but just need to look into it a bit more. Believe it or not, I'm actually treated for AS at the Middlesex Hospital where it was developed, though my own rheumatologist is not the doctor who developed it. He's actually not that big a believer I don't think in anything that could be perceived as 'alternative'. However, the hospital is sure to have some information on it.

Not sure I could manage a fast. Gave up the old cigarettes there five months ago after 12 years of smoking, the last few on at least 30 a day, so am permanently ravenous! I also have some very important exams coming up so need to keep the energy up. But I may well give it a try in a couple of months when they are out of the way.