52 replies to this topic

[radikal]

greetings earthlings. I hate to be a downer, but it is a matter a responsibility. I used to be a low dose baby for many a year. Then...
I'd rather link to a post of mine from Feb this year (under the handle of Cloud9) on the Accutane Action Group Forum (the accutane haters forum). A number of years back I used to be a low dose advocate against the lot of them.
You guys walk on beaten paths. link to my post:
Hyperostosis: payback time

[andersoj]

greetings earthlings. I hate to be a downer, but it is a matter a responsibility. I used to be a low dose baby for many a year. Then...
I'd rather link to a post of mine from Feb this year (under the handle of Cloud9) on the Accutane Action Group Forum (the accutane haters forum). A number of years back I used to be a low dose advocate against the lot of them.
You guys walk on beaten paths. link to my post:
Hyperostosis: payback time

Hey radikal, You've already warned me about the potential pitfalls of low dosing, but unfrotunately I can't kick it. What dose were you taking BTW? I manage to get by with 10 mg/ 4-5 days, although I'm sure that's still not good enough.

[radikal]

I am now experiencing severe wrist pains (both hands) - it hurts to hold a pen. Will get x-rays done, it will likely confirm my suspicion that hyperostosis continues to extend its grip. Ibuprofen helps somewhat.
Guys, cut this shit off, I'm not making this up. I remember thinking some five years back that I will find the strength to live with whatever consequences, surely it couldn't be a worse life than I was living at the time. Umm, yeah. I was operating on the assumption that accutane will cure me, so it seemed like an acceptable trade-off. Well it's no cure AND now I also deal with the side effects.

[andersoj]

I am now experiencing severe wrist pains (both hands) - it hurts to hold a pen. Will get x-rays done, it will likely confirm my suspicion that hyperostosis continues to extend its grip. Ibuprofen helps somewhat.
Guys, cut this shit off, I'm not making this up. I remember thinking some five years back that I will find the strength to live with whatever consequences, surely it couldn't be a worse life than I was living at the time. Umm, yeah. I was operating on the assumption that accutane will cure me, so it seemed like an acceptable trade-off. Well it's no cure AND now I also deal with the side effects.

Sorry to hear that Radikal, happy to report that I'm off the shit and am currently clear from a high dose of resveratrol. You might want to look into it.

[LionQueen]

greetings earthlings. I hate to be a downer, but it is a matter a responsibility. I used to be a low dose baby for many a year. Then...
I'd rather link to a post of mine from Feb this year (under the handle of Cloud9) on the Accutane Action Group Forum (the accutane haters forum). A number of years back I used to be a low dose advocate against the lot of them.
You guys walk on beaten paths. link to my post:
Hyperostosis: payback time

radikal, what dose were you on, and for how long?

I am reading some of the back posts on the Cloud9 account, and it looks like you ranged between 20 and 40 mg daily for 5 years .... am I reading correctly?

I don't know how much you weigh, of course -- but I have to say, that doesn't strike me as a low-dose regimen at all. I have never taken more than 10 mg/day (did that for 60 days), and am currently on a maintenance dose of 10 mg/week.

I am horribly sorry for what you are undergoing -- it sounds dreadful -- but I don't know how applicable your experience is to people who are on extremely low doses. Any light you can shed here would be appreciated.


Some related info:

Skeletal abnormalities, similar to those occurring with high dosages of systemically administered vitamin A, have occurred in patients receiving isotretinoin therapy. Some evidence suggests that long-term, high-dosage, or multiple courses of isotretinoin therapy may have more of an effect on the musculoskeletal system than a single course of therapy.

A high prevalence of skeletal hyperostosis (with spine degeneration) resembling diffuse idiopathic skeletal hyperostosis has occurred in several adults and children with disorders of keratinization receiving high dosages of isotretinoin (generally 2 mg/kg daily or higher) for periods ranging from 6 months to several years.

Diffuse idiopathic skeletal hyperostosis is a disorder of osteophytes and bony bridge formation that occurs predominantly in the spine. However, minimal skeletal hyperostosis (e.g., nasal bone osteophytosis) and calcification of tendons and ligaments also have been observed radiographically in patients with severe nodular acne who received a single course of isotretinoin therapy at recommended dosages.

Risk of developing hyperostosis appears to increase with increasing age and dose and/or duration of isotretinoin therapy. In one clinical study, hyperostosis was not observed in adolescents 12-17 years of age who received 1 mg/kg daily of isotretinoin, given in 2 divided doses, for 16-20 weeks. However, hyperostosis may require a longer time frame to develop.

The clinical course and importance of skeletal hyperostosis in isotretinoin-treated patients with severe nodular acne remains unknown.

[radikal]

greetings earthlings. I hate to be a downer, but it is a matter a responsibility. I used to be a low dose baby for many a year. Then...
I'd rather link to a post of mine from Feb this year (under the handle of Cloud9) on the Accutane Action Group Forum (the accutane haters forum). A number of years back I used to be a low dose advocate against the lot of them.
You guys walk on beaten paths. link to my post:
Hyperostosis: payback time

radikal, what dose were you on, and for how long?

I am reading some of the back posts on the Cloud9 account, and it looks like you ranged between 20 and 40 mg daily for 5 years .... am I reading correctly?

I don't know how much you weigh, of course -- but I have to say, that doesn't strike me as a low-dose regimen at all. I have never taken more than 10 mg/day (did that for 60 days), and am currently on a maintenance dose of 10 mg/week.

I am horribly sorry for what you are undergoing -- it sounds dreadful -- but I don't know how applicable your experience is to people who are on extremely low doses. Any light you can shed here would be appreciated.

Hi, I'm not checking out the forum that often...to answer your question: No, you're not reading it correctly. There *have* been times in those five (actually six) years when I was on 20 and 40 mg/day (even 80 mg for the first six months), but there were also many months when I wasn't on isotretinoin at all (just trying - and failing at - alternative treatments), and also about 15 months when I was low dosing at an average of 7 mg/day. My average body weight was 75kg, so that yields about 0.1mg/kg/day, the minimum needed to get at least sebum reduction in my case.

About wrist pains: it was tendonitis after all, I am largely recovered now. HOWEVER, starting with last week, after experiencing severe pain in my right heel (calcaneum), X-rays showed two calcaneal spurs, which my doctor considers the next stage in the progression of hyperostosis.
Large doses of Ibuprofen and ultrasound physiotherapy helps.

This time I am effectively disabled, since it's painful to walk, compared with the cervical hyperostosis, which is quite serious but hasn't been hurting lately - the entire cervical spine has ossified and I have lost most neck mobility since. It was a bitch while active, I can live with it now.

The lesson is, no one can tell you what the maximum "safe" lifetime dose is - no such study exists. I would guess there's no safe dose. In my book, it's not a cure, and it's unsafe for a period longer than six months at any dose.

[*MEaGAiN*]

hmm ive read a lot of info about low dose accutane and accutane in general but it seems like it depends on the person who takes it. If my derm would be so kind ot prescribe it i would gladly accept. It's my life and i would rather live with the consequences than deal with this persistent acne forever. Plus all my brothers took it and its been a few years and theyre all fine so that makes me hopeful

[timmoore]

does low dose accutane at 10 mg also effect keratincye cell proliferation and stickiness?

[radikal]

does low dose accutane at 10 mg also effect keratincye cell proliferation and stickiness?

I couldn't tell; this isn't directly measurable, perhaps only in a clinical setting under a microscope, which wasn't the case. It is less of a problem though if sebum is controlled, since that link in the cascade chain is broken, or subdued if you will.

[RedMcIntosh]

As radikal did I've took a big amount of isotretinoin. An average of 20 mg for 4 years. But his amounts were much more dangerous than my dosages as I saw. Now I've very weak the joints of my knees. I can use only Nike air shoes but I can walk more than 12 km without problems. Of course I'll never run again. The last time I run 1 km more or less I've got a lesion for 1,5 months.

Near 30 grams of isotretinoin during those years just achieve 50% of remission. And I've had moderate acne not severe. It's a cr@p!

My case was identical to Vanessa13688 who shows her case in the "Accutane Gallery" (and I've also touched my face as she has done but I guess it's much less disgusting than have those pustules)

That's why now I want to take just 20 mg two times per week, Mondays and Thursdays, for 3.5 years waiting the SMT D002 drug at beginnings 2012.

My height is 1.70 m, weight is 55 kg.

130 mg x 55 kg = 7150 mg (it could be calculated from 120 mg per kg up to 150 mg)
40 mg / 7 days = 5.72 mg
365 x 3.5 = 1278 x 5.72 => 7310 mg

It's not a trouble. If I would calculate with a base of 150 mg / kg => 8250 (for an extra half year)

I think now it could be better to do as LionQueen with 10 mg per day for the first two months, then 2 pills of 20 mg per week, then... well... I don't know how many months did she take 40 mg per week until she decided just 10 mg a week.

Because the drug I guess almost everybody wants will be ready maybe at the last months of 2011, in my country could be available on March or April of 2012.

[nicholasa]

lionqueen

I have the same as you - mild acne and foliiculitis on neck and chest after heavy antibiotic therapy...could i ask what derm you are seeing ?...sounds like you are getting some results...i have tried all the antibiotics with no luck at all

[holdontohope]

does low dose accutane at 10 mg also effect keratincye cell proliferation and stickiness?

Within 1 month of 10mg of accutane a day, my blackheads disappeared overnight. of course, they came back about a month and a half after I went off. Bummer.

[radikal]

As radikal did I've took a big amount of isotretinoin. An average of 20 mg for 4 years. But his amounts were much more dangerous than my dosages as I saw. Now I've very weak the joints of

...snip

I think now it could be better to do as LionQueen with 10 mg per day for the first two months, then 2 pills of 20 mg per week, then... well... I don't know how many months did she take 40 mg per week until she decided just 10 mg a week.

Because the drug I guess almost everybody wants will be ready maybe at the last months of 2011, in my country could be available on March or April of 2012.

don't kid yourself; there is no proven long term safe dose. What *is* proven in studies is the large incidence of skeleton alterations from medium/long term usage. It's in the prospect booklet for ****'s sake. The seizures as well. I haven't had one in years, but had two while on the drug.
I have no answers, save for a boatload of antibiotics.

If you read my back posts on the accutane haters forum, you'll see that I was unflinching and confident in my low dose pill-popping choices. So why the 180 now, since I've become a statistic? Think of it for a moment.
The irony is the wiser me would still do it if faced with the same affliction - but only for a couple of years until my body acne entered remission. The facial acne - try to control it by any other means or live with it. It's not worth the risk of disability later on.

[timmoore]

does 10mg once or twice a week make the skin more fragile?

or only higher odses, what makes it fragle and slower to heal

[peteyboy]

I am on a low dose accutane treatment (30mg/week) and was planning to use it for as long as necessary at 10mg/week. The reason is that I believed it will not as harmful because it will take me a long time to reach the cummulative dosage of 1 standard course. However, this is what I found online...

Retinoid hyperostosis is age dependent in that it increases with age, with or without retinoid therapy. It has been observed with naturally occurring vitamin A compounds and with the drugs isotretinoin, etretinate, and acitretin. This toxicity is common and related to dose and to duration of treatment. About 10% of patients who are treated for acne with standard courses develop detectible changes. With higher doses, changes are more prominent. Over long periods of retinoid exposure, hyperostoses occur even at very small doses. After long-term treatment (5 years), they can be found in most patients

Coincidentally, most of the negative personal reports online are those on persistent musculoskeletal pain which is likely caused by skeletal hyperostosis (it affects bones, tendons, ligaments).

This is such a disappointment. I thought I had found an effective and safe method. Now I guess I will need to weigh the risks and benefits again to see if I should continue with the treatment.

[KarmicKandy]

Radikal,

Was your tane prescribed by a dr or did you self medicate? I ask because it sounds like a large cumulative dose that you were on for so long. Most on here who do a low dose, long therapy get it online and those pills can have much higer levels of vitamin A. So, it may not be so bad for people who get it at the pharmacy....?

[Marisol]

Hey everybody! i'm on the 42 day of accutane and my dose is 20 mg/day.. my acne is mild/modertae (not sure exactly), but what really bothers me is the spots that are deeply under my skin. They are not red and break out rarely, but there is just plenty of them and they are very visible!!! and they seem to grow in number constantly! especially on my cheeks. I've always had such a kind of spots, not that many though.. and i expected accutane to make them go away, but these spots don't even seem to do so.. has anyone had similar experience? and what did u do? oh, and acne on my back isn't getting better stil.. the same breakouts.. please, i need ur advice

[radikal]

Radikal,

Was your tane prescribed by a dr or did you self medicate? I ask because it sounds like a large cumulative dose that you were on for so long. Most on here who do a low dose, long therapy get it online and those pills can have much higer levels of vitamin A. So, it may not be so bad for people who get it at the pharmacy....?

both. I switched doctors when the first one refused further prescriptions. I also self-medicated with imported isotretinoin. I don't think it makes any difference where you source the drug from.

[radikal]

I've been PM-ed by a fellow board member with a request for an online shop for accutane, since I self-medicated before. This was my reply:

"this was years ago; even if I had an online store to point to I wouldn't give instructions to anyone. My current stance is very much against isotretinoin treatment, unless in very severe cases, doctor-prescribed and supervised, and no longer than 12 months in a lifetime. I was a severe case so I did qualify, but I've overdone it and now I'm paying the price.

To put things in perspective, at my latest medical I was told I will have trouble walking within 5-10 years. I am 35."

[oli girl]

I've been PM-ed by a fellow board member with a request for an online shop for accutane, since I self-medicated before. This was my reply:

"this was years ago; even if I had an online store to point to I wouldn't give instructions to anyone. My current stance is very much against isotretinoin treatment, unless in very severe cases, doctor-prescribed and supervised, and no longer than 12 months in a lifetime. I was a severe case so I did qualify, but I've overdone it and now I'm paying the price.

To put things in perspective, at my latest medical I was told I will have trouble walking within 5-10 years. I am 35."

I have to agree w/radikal. I was not on a low long term dose. My ankle started having problems first. I was told that usually people who been on long term get bone spurs and calcifications and only in the spine.
I just now getting help and I have trouble walking. This is just in a 8 month period of time off accutane. I have hyperotosis in and enthesopathy in four diffrent places. My leg tries to give out some of the time. My acne is worse now to top it off. I would never recommend accutane, There are numerous studies on diffrent things assoc. w the bones.

I found this study and thought how interseting.

Greater Trochanter enthesopathy: An example of short course retinoid enthesopathy: a case report
Dept of physical medicine and Rehab, UMDNJ-New Jersey Medical School, West Orange, New Jersey, ETATS-UNIS

Irreversible skeletal changes have been described in pt w/dermatologic disorders treated w/Accutane. A synthetic Vit A derivative. Although retinoids were developed to avoid toxicity assoc w/ vit a, skelatal lesions and rheumatologic consequences are possible hazards of isotetinoin tx. Enthesopathy is one of the potential musculoskeletal sequelae and is characterized by pathologic. sometimes painful changes at the insertion of sites (entheses) of tendons, ligaments and articular capsules into the bone. We report a pt who was reffered secondary to an extended hx of bilateral hip region pain. She was subsequently found to have a greater trochanteric enthesopathy. A detailed pt hx revealed past use of Accutane for cystic acne. The Tx including meds,corticosteroid inj, p.t. and activity modifications, is described and the pertinent lit is reviewed.
We believe pts who are prescribed isotretinoin should be warned about this potenital pathologic condition at the initiation of tx and that physicans who are treating pts w/ a hx of Accutane use should be suspicious of underlying enthesopathies as the etiology of pain of musculoskeletal orgin.

American journal of physical medicine and rehab ISSN 0894-9115 1999 vol. 78

I also think someone else on this board bought accutane on line and he called roche and gave them the numbers and roche confirmed it was thier product. So i also agree w/ radikal it doesn't matter where u source the drug from. Accutane has alot of vit a in it v/s vitimans or food.