#26780 - 01/15/06 07:51 AM
Accutaine link?
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pattiann27
Member
Registered: 01/15/06
Posts: 3
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I have not been diagnosed but am researching symptoms as they appear...i was treated with Accutaine for severe cystic acne in 1990 and now I,m having medical problems associated with side affects caused by the treatment.I have been diagnosed with IBD and having tendon problems in my legs/hips/heels.
i'm curiuos to know if anyone else was treated with Accutaine and has AS.
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#26781 - 01/15/06 09:24 AM
Re: Accutaine link?
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Sharelrn
Member
Registered: 11/06/05
Posts: 90
Loc: Pearland, TX
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I was treated with Accutaine in 1997-1998 for cystic acne. I was diagnosed with AS in Feb. 2005, but have had symptoms off and on for 15-20 years. I think I had early AS before the Acctaine. Are you saying that there is a link between that acne med and AS? Very interesting and scary!
Thanks in advance for the answer,
Sharel in Houston
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#26782 - 01/15/06 10:19 AM
Re: Accutaine link?
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pattiann27
Member
Registered: 01/15/06
Posts: 3
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well, the more research i do the scarier it gets...i was diagnosed with anxiety/depression 9 years ago...then new warnings about accutaine came out re: suicide/depression as a side affect even years after treatment with the drug was discontinued.
then 7 years ago i was diagnosed with ibs, now there is a class action law suit against roche pharmacuticals linking this to accutaine.
during the last 4 years i have had pain in my feet and heels also stiffness in my lower back/hips/legs...thought it was plantar facitis...
after reading the latest on accutaine side affects listed in the PDR-drug reference book they have listed "skeletal hyperostosis" and calcifications of tendons/ligaments as a side affect.
when i took accutaine in 1990 the drug was out for 10+ years, i did rsearch first. the warnings were only for temporary lipid(cholesteral)increase and severe warnings not to become pregnant due to risks of birthdefects of fetus... now look what's listed; 5 pages of warnings...i'm not trying to pass blame just trying to put the pieces together...
p.s. accutaine is still being prescribed to young people to treat their acne.
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#26783 - 01/15/06 01:20 PM
Re: Accutaine link?
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Sharelrn
Member
Registered: 11/06/05
Posts: 90
Loc: Pearland, TX
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Well the plot thickens! I can say I had sacroiliitis symptoms, plantar fasciitis and Iritis (although undiagnosed at the time) before taking Accutaine, but the IBS started after taking it. I wonder if it can activate flares or worsen the symptoms of already existing AS/auto immune problems??? Thanks for responding, I am going to do some research myself over the next few days and see what I can find out. God Bless from Houston. Sharel
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#26784 - 01/15/06 01:54 PM
Re: Accutaine link?
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woomera
Member
Registered: 12/02/01
Posts: 569
Loc: Chicago, IL, USA
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Hi Patti Ann,
The link you are actually looking for is the HLA-B27 gene. The gene is not only associated with AS and the spondyloarthropathies but with some types of severe cystic acne. My brotherand my sister's son have severe cystic acne, so did my mother's brother. I have AS, so does my sister and my mother. All of us are HLA-B27 postive.
I looked for the research that shows this link and could not find it. I believe that it is in Dr. Khan's book Ankylosing Spondylitis the facts.
There was research from the late 90's that showed sketal changes and tendon enthesitis in some patients who took Acutane, but those problems are so similiar to AS I wonder if instead of truely was AS brought on by using the Acutane. Or if the patients in the research were going to get AS anyway.
_________________________
Michelle
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#26785 - 01/15/06 03:00 PM
Re: Accutaine link?
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rmusg
Member
Registered: 10/19/05
Posts: 19
Loc: El Paso, TX
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I was so glad to read your post on the link between accutane and AS. I was diagnosed with AS last July, but have suffered for more than 12 years. During that time, I have taken two rounds of five months of accutane for my severe acne. Thank god it cured my acne, but everything comes with a price.
The second time I took accutane was last year. After a couple of weeks, I noticed that I was in quite a bit more pain than usual. I refused to stop taking the accutane...I guess I'm too vane. Anyways, over the months, the pain worsened. It spread to my shoulders, ribs, neck, and back of my heels. It was very difficult to breath, move around, and to live a normal life, but I didn't know what was going on. I took 3 ibuprofen every four hours and two baths a day. The erector pilli muscles running up and down my back were often completely contracted for days at a time. I was often shaking and throwing up at night from the pain. Nothing helped, but I was stupid and keep taking the accutane. (The first round of accutane I had taken four years prior and I was in more pain than usual, but nothing like this.)
After I stopped the accutane, the level of pain subsided some, but it was still much greater than it had been before I had begun the treatment. It was then that I decided that I better go to a rheumatologist.
The accutane definetely, without a doubt, accelerated my AS. It is a lot worse today because of it, and I do believe that this has happened to other people. Probably even to people with different kinds of arthritis or immune diseases. I think that it should be on the warning label that it can worsen AS or other diseases. It is certainly something that should be looked into. I'm not sure that it actually can trigger the start of a disease though...I think it is more likely that it helps to accelerate a disease process that is already in place.
As far as the HLA-B27 gene, I am negative. The acne could be related to the AS, but not through that gene. Well, we all know that there are many, many genes involved in this disease...they just haven't pinpointed them yet.
At any rate, I don't think that the drug should be pulled off of the market. I just think people should be warned. We all make our own decisions about our medical care. No one forced me to take those pills. Accutane is dangerous, but so are many drugs. It takes many, many years to really know what a drug is capable of. No drug can have only one effect. I am on Enbrel. Who knows what it'll do to me! I'll take my chances though because it helps me live a normal life. Accutane helps people whose faces are severely disfigured to live a normal life too.
Let us know any research you discover about other people with AS who have taken accutane as well!
Good Luck!
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#26786 - 01/16/06 07:36 AM
Re: Accutaine link?
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pattiann27
Member
Registered: 01/15/06
Posts: 3
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hi everyone,
your input has been great.as i said in my first post, i have not been formally diagnosed, just
a newcomer with questions.I'm certainly going to be tested for the gene.i have 2 siblings that had acne issues but mine was by far the most severe.age 10-27.accutaine was a godsend for me.not for vanity,but saved my self esteem.some people think you get acne from lack of hygiene...
anyway,i plan on reading the book mentioned above and continue to post.
thanks for all of the replies.
god bless!
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#164490 - 01/06/10 05:26 AM
Re: Accutaine link?
[Re: pattiann27]
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kbailey310
First time visitor
Registered: 01/06/10
Posts: 1
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Hi,
I just wanted to say that I had severe cystic acne when i was in high school. I also had a lot of joint paint in knees and hips and back and had a history of bowel problems since I was very young.
After graduating high school I went to a dermatologist for the cyst, who prescribed accutane. After starting accutane my joint pain was almost imobilizing. The cyst cleared up, but I my pain was intense. I was later diagnosed with ankylosing spondylitis.
after i stopped taking the accutane my pain diminished. I believe there is a link between acne, bowel problems such as IBS, or IBD and Ankylosing Spondylitis. I still suffer from joint pain and bowel problems, but the cyst have gone. occasionally i have acne flair ups and my joint pain definitly flairs up during those periods.
anybody with treatment suggestions?
Edited by kbailey310 (01/06/10 05:28 AM)
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#164493 - 01/06/10 06:20 AM
Re: Accutaine link?
[Re: kbailey310]
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JenInCincy
Registered Visitor
Registered: 05/19/08
Posts: 2164
Loc: Cincinnati, OH
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Hi, you are right about the link between IBD (not IBS) and spondylitis; it is long established. Do your acne flare-ups respond to the medications you take to treat your joint flare-ups?
_________________________
Jen, 37, undiagnosed; happy partner of James & mom to Evan, 10 & Lucy, 8 (Crohn's disease dx age 3)
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