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  • #16
    Re: Started Cyclosporine

    Hello again,
    Seems in my absence this thread has gotten a little follow up lol.

    So at this point I've been on the med for close to a year and a half. I've been doing really well with it. My urgency, frequency, is good and my pain is manageable (usually about a 3 - whereas before it was usually a 6-7). Side effects I've had consistently since the beginning is really just hirsutism (a little hair growth above the lip) which is easily taken care of. Extra hair growth, once again easily taken care of. At the beginning I had beginning I had nausea (because of the heartburn) and heartburn but that went away as I got used to the med. There is increased chance of opportunistic infections - for me that meant a couple of bladder infections, a ingrown toenail infection thing, and a staph infection (not mrsa) on my hands (where I had cuts from something else). They all went away easily with 1 round of antibiotics.

    So from the dose above the specialist I saw in July was the one who took on my case and I love him as my new doctor, I wish all my doctors were like him - he listens and is just great in general. When I first went over to him he ran a few tests that my previous doctor never did - I'm assuming they were newer tests since when I was first diagnosed. Found out some new information that way that was interesting. He did also want to do a normal cystoscopy both to see how I was doing from my last one 7 years ago and because of the thickened lining - and I apparently have tribeculations (spelled wrong) - essentially the inside of my bladder looks like a honey comb from spasms. He did want to switch me to botox after that (he has several patients on botox who are doing well - I'm his only patient on cyclosporine) - but I said I didn't want to as this was still working for me and I'm a little afraid of the botox injections lol. He listened and didn't push it...

    A couple of months back when I had my labs done, my cyclosporine levels kept coming back high with my labs but all of my other results were relatively normal, they had me redo the test a few times but said if it didn't go down I'd have to go off the med. It did go down and so I was allowed to continue with it.

    If I should have to go off the med either because of labs or some other reason (quits working, worse side effects, adverse reaction etc.) our next plan of action will be the botox, and so that's a little weight off my mind as to where do I go from here if something happens with this?

    ------------------------------------------------------------------------
    On a completely different note, I've had eczema on my hands since I was about 18 or so. Last year when I started the cyclosporine my hands got better for about 8 months but then it stopped working on my hands. My hands have been getting worse over the past couple of years but this year I'm also having joint pain with them...
    I saw my dermatologist on Friday. With how my hands look and with the joint pain - I apparently now have psoriatic arthritis, as eczema does not cause joint pain. At first she was going to have me go on methotrexate but with the cyclosporine it would be too hard on my liver. So then it's now either Otezla or Humira, and in order to try Otezla with my insurance company I need to try Humira first. So looks like I'll be on Humira and Cyclosporine going forward. So pretty much any side effects I have in the future I won't be able to definitively say are from the cyclosporine so pretty much the above will be my comments on how the cyclosporine has been for me so far. Obviously if the humira makes things worse I'll go off of it, but I think they had a trial with it for ic at some point, but there wasn't enough people who responded to it vs the placebo or something? So hopefully it won't make it worse, that's all I'm hoping.
    ------------------------------------------------------------------

    I will say I've gotten a lot of push back on this medication from my primary care doctor (the cyclosporine that is), she considers it a dangerous drug and from other doctor's I've seen they don't like it either. Their thought process is with transplant patients it's saving their life, but with a disease like IC - if it ruins the kidney's or liver it could end up taking a persons life when the disease itself would not. My primary also specifically brought up the potential for doctors to be sued (long story on how we got into this discussion) if something should go wrong. So essentially with some doctor's it's not that they're lazy - with some it's just that they 1) don't want to do more harm then good 2) don't want to potentially be sued if something should go wrong 3) some practices will not allow the doctor to use medications for off label use.. There was another reason but I forgot what it was.

    Anyway, the reason why I knew to check back here was because I got a private message and came to check that, otherwise I kind of thought people weren't that interested in this - sorry for taking so long to reply..
    Diagnosed with IC when I was 14 (in 2003)
    Diagnosed with IBS when I was 19 (in 2008)
    -At 14 had a cystoscopy with hydrodistention (confirmed IC, after only 3 months of searching)
    -At 19 I had another cystoscopy with hydrodistention (because of elmiron side effects)
    -From when I was 14 to 19 I was on Elmiron, but had a lot of side effects
    -Had a colonoscopy (because of elmiron side effects) - after which I was diagnosed with IBS.
    -Did instills weekly for over a year (after that I got chronic uti's)
    -Thought I was in remission for a few years, however several of the uti's I thought I was getting were actually bad IC flares, and the urgent care drs never told me nothing was growing out in the culture.
    -Medications that I'm taking right now that help with IC symptoms:
    -hydroxyzine hcl 25mg
    -amitriptyline hcl 35mg
    -Cyclosporine (unmodified) 400mg (dosage subject to change)
    Overall I have IC, IBS, Pelvic Floor Dysfunction, Recurrent bladder infections, and some menstrual issues as well.

    -Brandy

    Comment


    • #17
      Re: Started Cyclosporine

      Sorry if this has already been asked, but can I have the name of your doctor who prescribes Cyclosporine?
      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


      • #18
        Re: Started Cyclosporine

        BrandyDW,

        I am glad you are doing well, that is great news. yes, you are right, most doctors are not willing to prescribe Cyclosporine. I remember bringing it up to one of the urogyne's I use to see and he said " no way". I agree, they are usually very worried about getting sued. The drug can be potentially dangerous. I also do not think a person can stay on it for a very long time, it is too dangerous. I wish they could come up with something that worked better for IC that had a less potential for serious side effects. That being said, I still think cyclosporine should be an option for people who have tried everything else to no avail. I do not even know why they have cyclosporine listed as a treatment on the AUA guidelines for IC because there are Not many Urologists who will even be willing to prescribe it. Every specialist I have had has always said No way. it is too bad because I think it could help give some people some relief. I myself probably would not be a good candidate because I get reactions to Everything I take, and I mean everything. It really sucks because it makes treating my IC hard.

        Anyhow, I am glad you are doing well and seem to have a great doctor who is willing to work outside the box in treating your IC.

        Comment


        • #19
          Re: Started Cyclosporine

          {{{Brandy******

          I too am really happy to see your continued story. New research has emerged with cyclosporine showing that it is tolerated well and for longer periods at a lower dose. I'm doing an article on it in our Spring 2015 IC Optimist and will use some of your story in that too. Yes, there ARE significant concerns about side effects but the lower dose seemed to resolve those. Here is the link to the research article -

          http://urologytimes.modernmedicine.c...s-glimmer-hope

          Jill O.
          Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

          Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

          Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






          Comment


          • #20
            Re: Started Cyclosporine

            Originally posted by eyeliner128 View Post
            Sorry if this has already been asked, but can I have the name of your doctor who prescribes Cyclosporine?
            I'm sorry I don't feel comfortable giving out his name... :/
            Diagnosed with IC when I was 14 (in 2003)
            Diagnosed with IBS when I was 19 (in 2008)
            -At 14 had a cystoscopy with hydrodistention (confirmed IC, after only 3 months of searching)
            -At 19 I had another cystoscopy with hydrodistention (because of elmiron side effects)
            -From when I was 14 to 19 I was on Elmiron, but had a lot of side effects
            -Had a colonoscopy (because of elmiron side effects) - after which I was diagnosed with IBS.
            -Did instills weekly for over a year (after that I got chronic uti's)
            -Thought I was in remission for a few years, however several of the uti's I thought I was getting were actually bad IC flares, and the urgent care drs never told me nothing was growing out in the culture.
            -Medications that I'm taking right now that help with IC symptoms:
            -hydroxyzine hcl 25mg
            -amitriptyline hcl 35mg
            -Cyclosporine (unmodified) 400mg (dosage subject to change)
            Overall I have IC, IBS, Pelvic Floor Dysfunction, Recurrent bladder infections, and some menstrual issues as well.

            -Brandy

            Comment


            • #21
              Re: Started Cyclosporine

              Originally posted by jen74 View Post
              BrandyDW,

              I am glad you are doing well, that is great news. yes, you are right, most doctors are not willing to prescribe Cyclosporine. I remember bringing it up to one of the urogyne's I use to see and he said " no way". I agree, they are usually very worried about getting sued. The drug can be potentially dangerous. I also do not think a person can stay on it for a very long time, it is too dangerous. I wish they could come up with something that worked better for IC that had a less potential for serious side effects. That being said, I still think cyclosporine should be an option for people who have tried everything else to no avail. I do not even know why they have cyclosporine listed as a treatment on the AUA guidelines for IC because there are Not many Urologists who will even be willing to prescribe it. Every specialist I have had has always said No way. it is too bad because I think it could help give some people some relief. I myself probably would not be a good candidate because I get reactions to Everything I take, and I mean everything. It really sucks because it makes treating my IC hard.

              Anyhow, I am glad you are doing well and seem to have a great doctor who is willing to work outside the box in treating your IC.

              Bring in literature, make sure they know that you know the risks of the medication, repeat everything that has been tried for you and why it hasn't worked, and bring up what you hope will happen if you attempt the medication. Tell them if after that it fails, you'll go with the next option that they have. But if you are out of options, and have tried everything, then pretty much just state your case. Hopefully they'll be willing to listen.
              Diagnosed with IC when I was 14 (in 2003)
              Diagnosed with IBS when I was 19 (in 2008)
              -At 14 had a cystoscopy with hydrodistention (confirmed IC, after only 3 months of searching)
              -At 19 I had another cystoscopy with hydrodistention (because of elmiron side effects)
              -From when I was 14 to 19 I was on Elmiron, but had a lot of side effects
              -Had a colonoscopy (because of elmiron side effects) - after which I was diagnosed with IBS.
              -Did instills weekly for over a year (after that I got chronic uti's)
              -Thought I was in remission for a few years, however several of the uti's I thought I was getting were actually bad IC flares, and the urgent care drs never told me nothing was growing out in the culture.
              -Medications that I'm taking right now that help with IC symptoms:
              -hydroxyzine hcl 25mg
              -amitriptyline hcl 35mg
              -Cyclosporine (unmodified) 400mg (dosage subject to change)
              Overall I have IC, IBS, Pelvic Floor Dysfunction, Recurrent bladder infections, and some menstrual issues as well.

              -Brandy

              Comment


              • #22
                Re: Started Cyclosporine

                Originally posted by icnmgrjill View Post
                {{{Brandy******

                I too am really happy to see your continued story. New research has emerged with cyclosporine showing that it is tolerated well and for longer periods at a lower dose. I'm doing an article on it in our Spring 2015 IC Optimist and will use some of your story in that too. Yes, there ARE significant concerns about side effects but the lower dose seemed to resolve those. Here is the link to the research article -

                http://urologytimes.modernmedicine.c...s-glimmer-hope

                Jill O.
                Ironically I think my dose is 3.5 mg/kg but I'm not sure, or at least that's the dose they started with before they lowered it a bit. Personally I'm hoping they'll do a complete clinical trial with it, with a large population so that it can be fda approved for the diagnosis. Once it's fda approved more doctor's would be willing to prescribe it I think as it wouldn't be off label and there would be more studies as to how effective it is. The studies right now are too small in number or population for the study (example n=20) not high enough for most doctor's.
                Diagnosed with IC when I was 14 (in 2003)
                Diagnosed with IBS when I was 19 (in 2008)
                -At 14 had a cystoscopy with hydrodistention (confirmed IC, after only 3 months of searching)
                -At 19 I had another cystoscopy with hydrodistention (because of elmiron side effects)
                -From when I was 14 to 19 I was on Elmiron, but had a lot of side effects
                -Had a colonoscopy (because of elmiron side effects) - after which I was diagnosed with IBS.
                -Did instills weekly for over a year (after that I got chronic uti's)
                -Thought I was in remission for a few years, however several of the uti's I thought I was getting were actually bad IC flares, and the urgent care drs never told me nothing was growing out in the culture.
                -Medications that I'm taking right now that help with IC symptoms:
                -hydroxyzine hcl 25mg
                -amitriptyline hcl 35mg
                -Cyclosporine (unmodified) 400mg (dosage subject to change)
                Overall I have IC, IBS, Pelvic Floor Dysfunction, Recurrent bladder infections, and some menstrual issues as well.

                -Brandy

                Comment


                • #23
                  Re: Started Cyclosporine

                  Yeah, sadly not enough doctors will be willing to even prescribe this medication, especially for IC a disease most doctors do not even believe in. I asked a urogyne I use to see a few years ago about trying this med and he said No. I also asked my Gastroenterologist years back about it( he is way more open minded, in fact he was helping me more than my urologist when I first got IC as sad as that is to say) and he even said No. He was always willing to try stuff and for him to say no, he must of knew it can do some serious damage. It is terrible though that the drug industries are not even coming up with any treatments for IC. If you think about it, only one drug exists that is FDA approved to treat IC and that is Elmiron and it has a Very low success rate. Crohn's disease which is another debilitating disease at least is getting more recognition these days and they are coming up with many different treatments for it. Most everyone knows what Crohn's disease is. If you ask any random person about IC they will look at you like " what the hell is that"?? I have even had doctors ask me what IC was, and that was recently!! I had a urologist ( first one I saw when I first started getting IC 10 years ago) and he told me there was no such disease as IC, that is was a made up thing. What????

                  I guess it all pretty much infuriates me. What IC needs is more recognition. Without recognition IC will remain a disease that is not known about by most which means there is little chance of finding good treatments and next to nill for finding a cause or cure. Our only hope at this point would be for droves more people to come down with IC or someone high up to get IC. Believe me, if some super wealthy person got IC or like a huge public official, they would scramble looking for a cause and a cure...













                  Originally posted by BrandyDW View Post
                  Ironically I think my dose is 3.5 mg/kg but I'm not sure, or at least that's the dose they started with before they lowered it a bit. Personally I'm hoping they'll do a complete clinical trial with it, with a large population so that it can be fda approved for the diagnosis. Once it's fda approved more doctor's would be willing to prescribe it I think as it wouldn't be off label and there would be more studies as to how effective it is. The studies right now are too small in number or population for the study (example n=20) not high enough for most doctor's.

                  Comment


                  • #24
                    Re: Started Cyclosporine

                    So I'm feeling kind of down at the moment.

                    So about 8 weeks ago I had gotten approved for and started on otezla for my psoriatic arthritis. So I was taking otelza with the cyclosporine. The otezla ironically gave me the worst time, I was having their normal beginning side effects but also tension headaches that would never end, I tried all sorts of things to try to get rid of them including a few prescriptions. Turned out that my blood pressure was spiking and that's what caused the tension headaches. So I was on that all together for 3 weeks. Felt horrible the majority of the time, between the tension headache, nausea and I vomited a few times. Otezla is mostly routed through the kidneys...

                    Then while getting approved for something else I had a flare up with my hands, and my psoriasis rebounded because of going off the otezla. (While it sucked for side effects, it actually worked for me really fast!).

                    Anyway after a few weeks I got on humira. So I was taking humira and cyclosporine together. I've done 4 shots of the humira so far. It's helped my hands some but it's being a lot slower than I thought it would be. Anyway, it is slowly making my hands better again. Humira is routed through the liver.

                    Through the last 20 days or so, I've had a uti. First I took a 7 day treatment of cipro, and for the first time, an antibiotic that was shown as sensitive to the bacteria, did not work for me... I went back and got retested and they said from what they were seeing I still had one. So right now still taking antibiotic to hopefully clear uti for good. I don't know what the antibiotic is routed through.

                    I had my labs done this morning.
                    My BUN and creatinine were both a bit elevated and my gfr was 54. There was another thing that was elevated a bit higher than normal. First time I've had my labs come back with a potential serious issue. - My cbc shows I'm still anemic and I've already been taking iron tablets for it.

                    Anyway, called the doctor after all the results were back. Since I was on break at work and didn't have much time to talk, he said right now I am to be off the cyclosporine entirely until Tuesday. In which my kidney's will be retested. Depending on what happens from there, they'll come up with a plan of action.

                    So now I'm slightly worried about my kidney's but they aren't so elevated that they shouldn't come down into normal range easily.
                    I'm also worried about the medication.
                    1) We don't know with all the above medication things I've gone through recently hasn't just messed up some things temporarily because before I had been good.
                    2) I would want to ask him if we can just lower the dose of the cyclosporine.
                    3) I'm still afraid of botox and that would be the next plan.
                    4) Either way how this ends up, I'm going to go with his plan of action. He's the doctor and so far he's done good by me. My kidney's are far more important. I just don't like that we're going into tougher decisions.
                    5) The humira and cyclosporine together do sometimes worry me too but with my hands I had to do something.

                    Right now I'm just blah. I want more choices.
                    Diagnosed with IC when I was 14 (in 2003)
                    Diagnosed with IBS when I was 19 (in 2008)
                    -At 14 had a cystoscopy with hydrodistention (confirmed IC, after only 3 months of searching)
                    -At 19 I had another cystoscopy with hydrodistention (because of elmiron side effects)
                    -From when I was 14 to 19 I was on Elmiron, but had a lot of side effects
                    -Had a colonoscopy (because of elmiron side effects) - after which I was diagnosed with IBS.
                    -Did instills weekly for over a year (after that I got chronic uti's)
                    -Thought I was in remission for a few years, however several of the uti's I thought I was getting were actually bad IC flares, and the urgent care drs never told me nothing was growing out in the culture.
                    -Medications that I'm taking right now that help with IC symptoms:
                    -hydroxyzine hcl 25mg
                    -amitriptyline hcl 35mg
                    -Cyclosporine (unmodified) 400mg (dosage subject to change)
                    Overall I have IC, IBS, Pelvic Floor Dysfunction, Recurrent bladder infections, and some menstrual issues as well.

                    -Brandy

                    Comment


                    • #25
                      Re: Started Cyclosporine

                      My husband has psoriatic arthritis (has had it many, many years). He does not have IC. His knees swell up and he has difficulty walking. He is now on methotrexate and Enbrel, he is doing very well with the Enbrel, his knees are doing much better. Ironically, when we were researching Enbrel, I found some info on a trial on using Enbrel for IC and there was some promise there. So Enbrel might be something you could try.

                      On another note, my husband has gone gluten free and that has helped his psoriatic arthritis. Have you tried gluten free? Jo Ann

                      Comment


                      • #26
                        Re: Started Cyclosporine

                        Actually, I heard that Humira did actually work well for a number of IC patients. I know the study failed, but I heard on the down low that there were some techinal issues that may have gotten in the way of the results. That would be interesting to see if that helps too Brandy....that is interesting Jo Ann about Enbrel and IC. I hadn't heard of that one....I hope they do more studies on IC and immunosuppressants in time. There definitely seems to be a subset of patients who may do well on these. I know they can be hard on the body, but they give them out for many other diseases. They show promise for IC so why do we have to jump through hoops to try it too? Especially when someone has failed all other therapies and has a low quality of life? I was just reading recently how some studies in the UK are finding Rituximab is showing promise for many Chronic Fatigue patients. Hmmm...an immunosuppressant and another disease related to IC for some patients...bottom line, more doctors should be willing to prescribe this for patients when all therapies have failed. Clearly immunosuppresants work for a subset. Sorry for the ramble....just feels good to share my frustrations sometimes.
                        "Where there is hope there can be faith. Where there is faith, miracles can occur."

                        Comment


                        • #27
                          Re: Started Cyclosporine

                          Any updates as to how your bladder is doing?
                          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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