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  • Cyclosporine and health risks.

    Hello,

    I have had IC since the age of 19, I'm 23 now and I have failed all the treatments that have been tried. I have gone through different instillations, hydrodistention, IC-diet, physiotherapy, Aloe Vera capsules, cranberry juice (ouch!) and pain medication consisting of parasetamol, Triptyl, Tramal, Lyrica, Panacod (I'm from Finland, don't know the English names) and several other strong pain killers. I haven't got much help from any of those and now after 4 years of being in pain and peeing all night long, I am so done that if I can't get relief I don't know what I'm gonna do. I received a call from my doctor last Wednesday and he said we have to start to consider surgical therapies such as neuromodulator and bladder removal. I was shocked about the news.

    I offered him to put me on cyclosporine trial first because it seemed like a good idea but now I don't know. The doctor thinks it is not a drug for me because of its side effects and cancer risk - not to mention the fact that me and my partner are wishing to have a baby in the near future. I am as pale as snow and red-headed, skin cancer risk in my case is high even without cyclosporine. However, the doctor said I can think about this for a while, he will prescribe it to me but not without hesitance. I don't know what to do. I want to avoid neuro modulator and bladder removal but don't want to live in fear of having a skin cancer or lymphoma in the future if the medicine works..

    Help, anyone? And I don't want any negative comments about modulator or bladder removal - they are my ONLY options if I fail/avoid cyclosporine.

  • #2
    Re: Cyclosporine and health risks.

    There are still some treatment options you may not have tried. There's information about what the various medications are called in other countries at http://www.ic-network.com/glossary --- Finland isn't specifically mentioned so I don't know if that will help you, but I hope so.

    Have you tried a low dose antidepressant? They can help in two ways --- they can help relax your muscles and they can interfere with the pain receptors in the nerve system. Have you tried a TENS unit --- you can do a web search for more information on those. They help by shooting tiny shocks into a painful area and it eases the pain. The TENS unit might even give you an idea of whether neuromodulation would work for you.

    Sending healing thoughts,
    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


    • #3
      Re: Cyclosporine and health risks.

      I think it's important to keep in mind that many of the side effects for cyclosporine are for the much higher levels prescribed for the drugs primary use, preventing organ rejection after transplantation. The level is much lower for IC and while side effects still exist, much less is known. I'm very fair skinned and took the drug for 5 months as part of a clinical trial with no problems. I understand that everyone is different, but I'd try it for a couple months with close blood monitoring just to know if it works for you. If it does, then have serious discussions about long term use and risks.
      Current Therapy:
      Pelvic Floor PT exercises
      Diet

      Past Therapy:
      Sacral Neuromodulation (twice)
      Pudendal Nerve Stimulation
      Bladder instillations (self-administered daily)
      Lidocaine urethral injections
      5 Antispasmodic OAB medications
      Biofeedback
      Cyclosporine
      Elmiron
      Botox (200 IU)

      Comment


      • #4
        Re: Cyclosporine and health risks.

        I had a long discussion with a rheumatologist here in the states about using cyclosporine for diseases like interstitial cystitis. He said that because the doses are so low when used this way, that cyclosporine is actually quite safe! He uses it on children with lupus(who don't respond to traditional treatment), and the worst he has seen is an increase in body hair. I agree that at first glance it sounds like a "scary" drug, but it's actually quite safe when used in such a low dose.

        And the blood tests you need to monitor your kidneys and liver when you are on it, are the same tests they run when you are on Elmiron (don't know if you have been on that or not, it is standard treatment in US).

        I think it is a wonderful option for patients who have not responded to any of the previous treatments.
        Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

        Medical research addict.

        Likes: hot baths and naps with cats

        Comment


        • #5
          Re: Cyclosporine and health risks.

          This discussion of Cyclosporine is interesting to me. i have wondered whether IC can be an autoimmune disease that will respond to some of the autoimmune medications. My husband has an autoimmune disease (psoriatic arthritis) and he takes methotrexate (similar to Cyclosporine) and gives himself Enbrel shots. These drugs have many potential side effects but they have been miracle drugs for my husband. He is living a perfectly normal life now--without these drugs he probably would not be able to walk.

          I wonder has there been any research about whether Ic can be an autoimmune disease? Has Enbrel been used to treat IC? Jo Ann

          Comment


          • #6
            Re: Cyclosporine and health risks.

            Originally posted by joannharllee View Post
            This discussion of Cyclosporine is interesting to me. i have wondered whether IC can be an autoimmune disease that will respond to some of the autoimmune medications. My husband has an autoimmune disease (psoriatic arthritis) and he takes methotrexate (similar to Cyclosporine) and gives himself Enbrel shots. These drugs have many potential side effects but they have been miracle drugs for my husband. He is living a perfectly normal life now--without these drugs he probably would not be able to walk.

            I wonder has there been any research about whether Ic can be an autoimmune disease? Has Enbrel been used to treat IC? Jo Ann
            I just Googled my own question (the scorce of all knowledge) and found that some doctors do believe that some IC is an autoimmune disease. I also found a recent clinical trial of Humira for IC. Humira is a shot (similar to Enbrel) given to treat Rheumatoid Arthritis and related autoimmune diseases. Was anyone here involved in the Humira clinical trial or know the results? I ask because I have seen what a miracle these drugs are for my husband and maybe they cold be a miracle for someone with IC. Jo Ann

            Comment


            • #7
              Re: Cyclosporine and health risks.

              IC is thought to be an autoimmune disease by most doctors.

              1) because it does respond well to immunosuppresants and 2) because of the interesting phenomenon exhibited by some IC patients who feel their IC symptoms are relieved by having a cold/flu/fever (meaning their immune system is diverted away from the bladder) and 3) because most urine samples of IC patients have an elevated WBC count, as if there were an invisible infection and 4) because of the lowgrade fevers during flares.

              Some interesting research, if you are so inclined, is to be found with Cyclosporine use in IC patients, particularly Dr. Robert Evans' in NC.
              Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

              Medical research addict.

              Likes: hot baths and naps with cats

              Comment


              • #8
                Re: Cyclosporine and health risks.

                My Christmas Wish for everyone here is that there could be a drug that performs the miracle that Enbrel has performed for my husband's psoriatic arthritis. Jo Ann

                Comment


                • #9
                  Re: Cyclosporine and health risks.

                  Originally posted by joannharllee View Post
                  My Christmas Wish for everyone here is that there could be a drug that performs the miracle that Enbrel has performed for my husband's psoriatic arthritis. Jo Ann
                  What a wonderful thought. I have a son with psoriatic arthritis and I understand. I'm so glad your husband is doing well --- my son is too! Now it's OUR TURN.

                  Warm hugs,
                  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: Cyclosporine and health risks.

                    Wow, as I was reading your post I also feel normal when I am sick, my bladder pain goes away! Interesting!
                    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: Cyclosporine and health risks.

                      Did you try the cyclosporine? I will be starting this within the next weeks and would really like to speak to someone who tried it.
                      Maria
                      I have had IC since January 2015 and mainly with pain / burning / warm feeling in bladder / discomfort.

                      Currently: Elmiron 4x100mg, LDN 4 mg at night, antihistamines

                      Tried and didnt work:
                      Meds; Uracyst, DMSO, Gabapentin, Cyclosporine A, Amitriptyline, hyperbaric oxygen chamber 40 x sessions, high dose long term antibiotics (8 months)

                      Naturals; Colostrum, DH Aloe vera, acupuncture, MSM, Glocosamine, Homoepathic treatment, marshmellow root, chinese herbs, IALURIL, Gotu Kola, D Mannose.

                      --

                      Please find a cure - so many are suffering

                      Comment


                      • #12
                        Anyone out there have anything to say about cyclosporine? I"m supposed to give it a try pretty soon if my insurance approves it.

                        Comment

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