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  • Accutane

    Where to start...
    All my worst health problems started directly after taking Accutane one month. Twin sister extremely sick from it. No Dr. would listen to us. Anyway, it dried out the mucous membrane of my body severely- dry eyes, lips, anal fissure. One problem after another. I am still overly dried out. Some took years to show up. Everything dealing with mucus membrane affected. Had heard that it could cause IBS. My Bartholin glands were affected and my Dr. said the drug could have dried them out. after liver infection and a bad case of cystitis the IC and IBS started up noticably. I do believe in MY case the affected mucus membranes, genectic factor, repeat cystitis, overacidic urine, lowered immunity all were causitive in my IC and made it noticeable. MY mucus membranes have never been the same in me since the Accutane. I know it has been a godsend for lots but was a nightmare for us. Anyway, maybe this will help someone out there. ( If Accutane helped you and did not affect you negatively, please don't let this worry you.)

  • #2
    I too started having ALOT of problems and pain after taking accutane, I DO believe that this probably caused my IC and Fibromyalgia. I took TWO cycles of high doses of it, it did clear up my acne but it destroyed my bladder and joints

    If you search the forum, we had a discussion about this a few years back and there were atleast 4-5 of us here that started having problems after accutane treatment.

    I'm so sorry that this happened to you too! PM me anytime!

    Love,
    Kara
    Hugs and Wishes for Pain FREE days!!,
    Kara


    www.loveforearth.net ~reducing plastic waste one bag at a time~

    Facebook: Kara Kaiser
    Twitter: Love4Earth

    Me and my Guccigirl... she helps me through those painful hours!

    Comment


    • #3
      Accutane

      I was diagnosed with IC about 6 years ago. I have taken Accutane for my acne and I also think it could be the cause of my IC. There has been alot of negative things coming out about the drug. I have seen alot of commercials about the lawsuits going on, and know there is a direct link between Accutane and irritable bowel syndrome, but so far I haven't heard anything about IC. I think I will give them a call.

      Comment


      • #4
        Let us know what you find out please. I also took accutane(two rounds as well) and now have a multitude of problems. I would like to know if they think this could cause IC, how heartbreaking that will be if it is so. One of the suits here says to call if you have ANY type of abdominal problems, not sure if IC counts. I am not interested in any crazy law suit just for money, but if this did cause all this heartache in our lives, I think we do need help with all these bills and loss of ability to work again.

        Sandra
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          Accutane

          I am so glad to hear back from you. I am going to look into this, I am too not interested in all of these law suits, but I agree that they need to be held responsible. I also think that the FDA doesnt investigate these drugs long enough and of course we pay the price. Good luck to you! Talk to you soon.
          Jen

          Comment


          • #6
            I took it for 10 months myself and have always thought of it as one of the causes, along with the 2-3 years of antibiotics my dermotologist put me on for acne.
            Currently dealing with IC (diagnosed May 2001), Fibromyalgia (January 2000) and ADHD (1998 sometime) and vulvodynia (Jan. 08)

            I work in the schools helping students with disabilities. I am a speech language pathologist working as an Assistive Technology Specialist. A very do-able job with IC.

            Medications

            Meds that I take:
            Elmiron 2 x day ; Effexor XR 37.5 ; Ritalin;
            Nasonex; Atarax 10 mg (night); Lidocaine 5%; monthly B-12 shots; Pyridium as needed

            Meds I am trying
            Urell

            Supplements that help:

            Condroitin Sulfate; Calcium Citrate; Magnesium Glycinate; Olive Leaf Extract; daily probiotic

            Other treatments that help:
            Physical Therapy for PFD; Massage for Fibro; Chiropractic for Fibro; IF Unit (like a tens unit) for pain

            Comment


            • #7
              Re: Accutane

              Hello,

              I know this is a REALLY old thread but I took Accutane this year and have developed IC as well. The reason I am even trying to respond to such an old thread is I am wondering if you all reported these symptoms to the FDA? I am currently reporting this to the FDA and hoping if enough people out there do it will be reported to the drug manufacturers and other poor people will be warned against this horrific drug!

              Generic name is: Isotretinoin (goes under names: Absorica, Claravis)

              If you have any question let me know, I am dead set on fighting this. Perhaps even a class action lawsuit could happen if enough people report this.

              Thank you,

              Maryanne
              Health Issues
              IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
              Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
              Symptoms:
              I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

              Failed
              Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

              WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
              Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

              Comment


              • #8
                roaccutane

                Hi Hon

                Are you talking about Roaccutane used to treat Acne? X I see you are~I have had 3x courses of oral roaccutane in the past and it never interfered with my bladder..if anything made my life easier, as at least my facial and back skin was absolutely clear...I had IC well before I went on Roaccutane, but we're all different, just thought I'd give another perspective..take care x
                Last edited by macey; 11-14-2014, 02:46 PM. Reason: adding something

                Comment


                • #9
                  Re: roaccutane

                  I have a friend who was put on this medication for severe acne. She had some really strict diet rules and some other guidelines she had to follow to help her stay safe on it. I don't remember all the restrictions, but do recall that at the time I thought it was severe --- even with my restrictions due to IC.

                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment


                  • #10
                    Re: Accutane

                    Originally posted by macey View Post
                    Hi Hon

                    Are you talking about Roaccutane used to treat Acne? X I see you are~I have had 3x courses of oral roaccutane in the past and it never interfered with my bladder..if anything made my life easier, as at least my facial and back skin was absolutely clear...I had IC well before I went on Roaccutane, but we're all different, just thought I'd give another perspective..take care x
                    Hi Macey,

                    Thanks for sharing your experience. I'm glad this drug didnt harm you. I believe accutane has been the triggering event for me as well as other ppl. I typed in Accutane under search on these boards and was amazed at how many ppl it had affected! I'm trying to get IC to be put on the warning labels, as it was nowhere listed on my medication. Thanks for writing!

                    -Maryanne
                    Health Issues
                    IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                    Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                    Symptoms:
                    I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                    Failed
                    Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                    WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                    Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                    Comment


                    • #11
                      Re: Accutane

                      Originally posted by ICNDonna View Post
                      I have a friend who was put on this medication for severe acne. She had some really strict diet rules and some other guidelines she had to follow to help her stay safe on it. I don't remember all the restrictions, but do recall that at the time I thought it was severe --- even with my restrictions due to IC.

                      Donna
                      Hi Donna!

                      Yes this drug is incredibly powerful. After doing research I have found numerous cases of accutane triggering IC, as well as Crohns, IBD, and Fibromyalgia. I now know of a girl personally who's colon had to be removed due to the affect of accutane, completely horrific. I'm hoping I can prevent other ppl from taking this risk, as my reaction was very rare but it happened! Also, I think many cases go unreported because the symptoms don't set it right away but even months or years later and ppl don't correlate it to the drug. Mine set in immediatly so I know it's the cause. Hopefully ppl will avoid it and try natural and topical remedies instead of this poison.

                      -Maryanne
                      Health Issues
                      IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                      Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                      Symptoms:
                      I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                      Failed
                      Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                      WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                      Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                      Comment


                      • #12
                        Re: Accutane

                        Hi Maryanne

                        Yes, I can understand your concern..is it listed on the leaflet under 'side effects' certainly seems too much to be a coincidence. My daughter (18) had a course of roaccutane, and I'll be warning her about this thread, although her skin does seem to have cleared wonderfully, I would be devastated if she developed IC. My latest flare seems linked to progesterone and menopause, and some of the effects of menopause are thinning of skin, as is accutane?? Hmmm

                        Comment


                        • #13
                          Re: Accutane

                          My 16 year old son is currently taking accutane (he's on his 3rd month). He has had very bad acne for many years. We tried every kind of acne treatment out there. The dermatologist had us try everything. Nothing was working. The accutane is working, but he still has acne right now. I don't like the possible link to IC. As far as his diet goes (Donna), we just have to make sure his cholesterol stays normal, as it can increase cholesterol. So, he doesn't eat a lot of red meat or saturated fat. He has to have his blood checked every month before we get a refill.

                          My cousin took accutane when we were teens, and she's now 43 and hasn't had any problems.
                          Jane
                          Diagnosed 1/7/14 via cysto/hydro

                          Current Treatment:
                          10 mg amitriptyline, DH Aloe Vera

                          Used During Flares:
                          Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

                          Practicing bladder training and stress control (hot baths, pelvic stretching)
                          Recently tried PT, do not appear to have PFD

                          Things that have not helped in the past:
                          Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

                          Also have migraines and IBS

                          Comment


                          • #14
                            Re: Accutane

                            Originally posted by my2boys99 View Post
                            My 16 year old son is currently taking accutane (he's on his 3rd month). He has had very bad acne for many years. We tried every kind of acne treatment out there. The dermatologist had us try everything. Nothing was working. The accutane is working, but he still has acne right now. I don't like the possible link to IC. As far as his diet goes (Donna), we just have to make sure his cholesterol stays normal, as it can increase cholesterol. So, he doesn't eat a lot of red meat or saturated fat. He has to have his blood checked every month before we get a refill.

                            My cousin took accutane when we were teens, and she's now 43 and hasn't had any problems.
                            Hi My2Boys,

                            I know many people who took Accutane as well and are ok. But I also know many people who developed all sorts of weird health issues. My friends sister developed IBD and had to have her colon taken out. My parents also know a boy who developed Crohn's disease after taking accutane. The thing is...sometimes those don't occur right away but later. Mine happened instantly. All I know is that this drug can be extremely harmful to anyone who takes it. I hope your son is closely monitored during and after taking it. But honestly if I could turn back time I would have never taken this drug. My health has suffered and it wasn't worth it. I wish you your son the best of luck.

                            -Maryanne
                            Health Issues
                            IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                            Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                            Symptoms:
                            I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                            Failed
                            Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                            WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                            Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                            Comment


                            • #15
                              Re: Accutane

                              Originally posted by macey View Post
                              Hi Maryanne

                              Yes, I can understand your concern..is it listed on the leaflet under 'side effects' certainly seems too much to be a coincidence. My daughter (18) had a course of roaccutane, and I'll be warning her about this thread, although her skin does seem to have cleared wonderfully, I would be devastated if she developed IC. My latest flare seems linked to progesterone and menopause, and some of the effects of menopause are thinning of skin, as is accutane?? Hmmm
                              Hi Macey,

                              My doctors truly believe that because Accutane affects the mucus membranes in the body (dry nasal passages, dry lips, dry eyes etc..) that is somehow affected the mucus in my bladder. It isn't supposed to do that, but somehow it did! Accutane also does thin the skin, which can create all other sorts of issues. I hope your daughter never gets IC but I hope she is aware of the signs. I wish her the best of luck!

                              It is not listed as a side
                              Health Issues
                              IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                              Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                              Symptoms:
                              I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                              Failed
                              Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                              WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                              Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                              Comment

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