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  • Started Cyclosporine

    Okay so today is Wednesday morning and I started cyclosporine Monday night. I'm taking 500mg per day - 200mg in the morning and 300mg at night, right now it's the plain kind, not the modified but may switch to modified next month (long story there).

    Right off the bat I had two side effects, constipation and severe urinary retention. Both thankfully are seemingly resolving themselves. Peeing has more or less gone back to normal, granted I want the peeing to get better but I don't want to have the issue of not being able to pee at all. The constipation lasted for a day in a half but now seems to be back to normal as well if last night and this morning were any judge. That I can say has gotten better with my ibs issues, hopefully that stays the way it is. I had abdominal pain, but that was from the constipation as it's gone now.

    Otherwise no allergies to it, and no nausea which I thought for sure I would have as I usually have that with antibiotics and other prescribed meds. I know I'm likely to have more side effects as time goes on, and I may share them as some people seem interested in this med.

    I can say one major win: I have eczema with my hands in the winter, just this past weekend they were cracked open and bleeding and generally just looked like a mess. I can say after taking it just 2 days so far, my hands have healed so much, almost before my very eyes. If my hands cuts are working so well with this stuff, I'm wondering if the cuts in my bladder are having a similar reaction. *fingers crossed*
    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

  • #2
    Re: Started Cyclosporine

    I'm a week in as of today. I can say there has been more side effects but not too bad. Urinary retention is all but resolved. Constipation still remains an issue but a manageable one. Stomach pain, but no worse than usual. Tiredness. Some very small amounts of blood in my mouth just from when I brush my teeth usually, I didn't have that before. A nausea/heartburn feeling that comes and goes. A burning sensation that comes and goes near the tips of my fingers. I'm more sensitive to temperature changes. Just an overall achey feeling. I did have a horrible migraine on Thursday when I woke up but it went away after a few hours with aleve. Dry/itchy eyes. Slight pressure feeling around my forehead. But it's all rather mild. My hands are still doing really good. My ibs seems a lot better, granted constipated but I consider that better than the alternative that I usually dealt with. Ic at times seems better but then other times seems like normal. I don't have my labs until next week. Then I go back to my dr not too long after that. Depending on how things go may ask for a slightly lower dose. We shall see how it goes.
    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


    • #3
      Re: Started Cyclosporine

      Please keep is informed. How are your symptoms?
      Diagnosed with IC in May 2011

      Current Medications:
      Elmiron 400 mg daily
      Imipramine 75 mg daily

      Comment


      • #4
        Re: Started Cyclosporine

        So I've been on the cyclosporine for around a month and a half now. I can say that about two weeks ago they lowered my dose down to 400mg a day (200 in the morning and 200 at night), because with my lab results my liver enzymes were marginally high (like 2 points or something it was a very small change), and my doctor wanted to be safe rather than sorry so took away 100mg. I can say at the time I wasn't entirely happy with that but I'm happy with it now. The side effects I had been having that first month had gotten better but I was still having some. When she put me down to 400mg they've all now virtually disappeared. Right now my biggest complaint is I get acid reflux symptoms but I had that before the med anyway. All the symptoms I had listed above are pretty much gone. I'm a little tired but not horribly so. Right now I have a uti, again, but those are recurrent for me so I'm not blaming it on the med. --- With this what I have noticed is my urgency has gone down by a lot, and so has my frequency. I'm now going about 6 to 7 times a day which I will so take! Also like I said the urgency or need to go feeling in between has gotten better as well. --- I do still have some pain but hopefully that'll get better as time goes on.. I also got good news today, my specialist (i've been seeing her for 10 years) who is retiring because she can no longer practice surgery has found me another specialist in the area who will take over prescribing me the medication (as long as everything continues to go well) and looking after the labs for me. That's a bit of stress off my shoulders, as I know most in town will not prescribe it. --- Gotta say right now I am definitely feeling up.
        Last edited by BrandyDW; 02-27-2014, 05:50 AM.
        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


        • #5
          Re: Started Cyclosporine

          So happy you're finding relief!
          Kadi

          -------------------------------------------------------------
          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.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "


          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

          Comment


          • #6
            Re: Started Cyclosporine

            I am really happy you are responding to cyclosporine!

            Comment


            • #7
              Re: Started Cyclosporine

              Thank you for updating us! So happy you are getting some relief!
              I will check back here to follow your progress!!
              Diagnosed with IC in May 2011

              Current Medications:
              Elmiron 400 mg daily
              Imipramine 75 mg daily

              Comment


              • #8
                Re: Started Cyclosporine

                Brandy, do you mind if I ask the name and location of the specialist (or, the new doctor you will be seeing)?

                I have been trying to get on Cyclosporine for almost a year, but the only urologist who will consider it is 2000 miles away, and I can never seem to get well enough to make that kind of trip. It would be a blessing to find a specialist closer to me who prescribes cyclosporine for IC.
                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


                • #9
                  Re: Started Cyclosporine

                  Originally posted by eyeliner128 View Post
                  Brandy, do you mind if I ask the name and location of the specialist (or, the new doctor you will be seeing)?

                  I have been trying to get on Cyclosporine for almost a year, but the only urologist who will consider it is 2000 miles away, and I can never seem to get well enough to make that kind of trip. It would be a blessing to find a specialist closer to me who prescribes cyclosporine for IC.
                  Uh, yeah. So the urologist I had for over 10 years did retire at the end of April. She did send over my information along with a letter to a new urologist and told me he would take on my case. Thing is he didn't, he refused the treatment plan. So I know 2 places in my city who will not do it for sure. Thankfully the urologist I had gave me a years worth of refills and my primary care doctor has taken on my labs for me. I have another consult with a different specialist in July. If that doesn't work I have another way with my insurance company/job of where they can potentially help find me a doctor willing to continue the treatment plan.

                  Other than the stress of the doctor issues, the cyclosporine has still been doing really well. Helped with urgency, frequency, and some of the pain. Still taking 400mg per day.

                  On another note, I had a trans-vaginal ultrasound done on Thursday and found out in addition to having a new diagnoses with something else I also have thickening of the bladder wall. They said it was due to the ic, which I can understand, but because of what else it could mean - should I get a cystoscopy every 5 years or something just to make sure it's not something worse?..
                  Last edited by BrandyDW; 06-21-2014, 01:18 PM. Reason: typo
                  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


                  • #10
                    Re: Started Cyclosporine

                    Hi Brandy,
                    Are you still taking Cyclosporine? It's something I'm looking into.
                    Thanks,
                    Sharon

                    Comment


                    • #11
                      Re: Started Cyclosporine

                      Hello..

                      please i beg you to keep us updated. i have been trying to get urogynecologist to prescribe this medication. she won't stating that she's never used it before and is not wiling to work with me to find the correct dosage.

                      Comment


                      • #12
                        Re: Started Cyclosporine

                        This is what I hate about doctors. Completely lazy and closed minded! I mean that is her job, to help you find help and a solution. To say she is not willing to work with you to find a correct dosage is just plain awful. She should not be practicing medicine. I mean I cannot tell you how many doctors I have come across who have been the same way, " closed minded and clueless about this disease". I am not a doctor, but even I have the intelligence to know that with a disease like IC, you have to experiment and think outside the box because IC is not a black and white disease, there are no clear cut answers. I get so frustrated at doctors because most of them are so lazy and do not even want to bother when it comes to complex issues. It is a sad shame!

                        Comment


                        • #13
                          Re: Started Cyclosporine

                          You need to find another doctor. From the IC website I learned there are about a dozen clinics of national reputation that are IC experts. The one closest to you is LIU Smith Institute for Urology, Long Island, NY, Dr. Robert Moldwin. Call and make an appointment to see him; good luck!

                          Comment


                          • #14
                            Re: Started Cyclosporine

                            Same here in the uk. I went to my dr requesting a broth urine test to check my urine. He said he had never heard of it. I asked why since September i have constant sensation of uti. He shrugged his shoulders and said that is what ic is. I asked what can i do more. He said nothing. All the urologist wants to do is a cysto, hydro and biopsies and will not prescribe anything until i consent to it. I refuse to have it done as i dont think it necessary especially as i have presented with same symptoms since september consistant with ic symptoms. I dont want to make my bladder worse. Here in the uk we cannot swap doctors or urologists like in the us. So i am trying hard to follow ic diet religiously and research supplements to help myself. So frustrating and depressing. My marriage is going through a hard time because of this and i have been married for 40 years. I feel so much for younger people who have to survive this and keep their marriage going too.

                            Comment


                            • #15
                              Re: Started Cyclosporine

                              Chrissyc,

                              I am sorry you are going through this. I have been dealing with this since 2005. Have tried most everything out there. I have Not had a hydrodistention though and really do Not want to ever have one. I am at a point where I am looking into finding someone who will take my bladder out. I was diagnosed with IC through a regular cystoscopy actually back in 2006 so I never went through a hydro. I am worried that any surgeon I see is going to demand I have that done first. I absolutely do not want to have that done. There is absolutely NO logic in having that test done in my opinion. I know it will make my pain worse, it stands to reason. What they are doing is stretching an already damaged bladder, makes no sense at all. I already know I have IC.

                              It is pure crap that your uro is not willing to treat you unless you have a hydro. A hydrodistension is not even a reliable means of diagnosis anymore. That should have been banned years ago in my opinion and only used for the minority of patients who seem to get help from them. Too bad you cannot put the doctor on the spot and say, listen I know that this test has a very good chance of making me way worse. You could ask him what he plans prescribing for you after this procedure for the awful pain it may leave you in? I would also say that since you are refusing to treat me unless I go through this, you should be held responsible should I get worse after this procedure. Of course that last bit would probably just piss him off, but I mean it is so wrong that he is giving you an ultimatum( do the hydro or I wont help you), this is wrong.

                              It sucks that you cannot get another opinion from some other specialist over there. It is true, over here in the States we usually can get different opinions especially if you have a PPO health insurance plan where you do Not need any referrals. Sadly there are not a ton of great doctors even over here who deal with this disease. They are limited. I mean there are a handful of supposed top specialists that are around the United States that are suppose to be the top guys for IC. I have never traveled to see any of them because I just don't want to get burned again, and insurance wont usually cover 100% when you travel out of your state. I went to Mayo clinic in Jasksonville Florida years ago for something else and they were awful. first I got absolutely NO help and I got stuck with a $10,000 bill! With IC though, there are not any other real new treatments on the horizon. Elmiron was the only medication they came up with that specifically treats IC, and this has been around for years now and it has a very low success rate. I mean I don't see what a specialist over in another State is going to offer me that the top specialists here have not already offered.

                              I may be a complicated case, there are some women who have gotten relief with some of the medications they use for treating IC. I think your urologist should try and treat you just based on your symptoms. I mean I don't see what the big deal is. None of the medications or treatments they use are that serious ( it is not like they would be putting you on a biologic drug or something that can have serious sometimes deadly adverse reactions). Then I could see the hesitation. But the drugs they are using are pretty mild for the most part. I mean they can have side effects, but they are not high risk medications. There is No reason to demand you do a hydrodistention.

                              I am sorry you are going through this. I have been married for 13 years now and I am very fortunate to have a good husband who is very supportive. I thank God for him everyday, believe me. My heart breaks for anyone who has this awful disease. I have friends who have other diseases that are potentially serious and they have way better quality of life than I do. It is sad. I pray we can all get some help, I mean some real help one of these days soon...













                              Originally posted by Chrissyc View Post
                              Same here in the uk. I went to my dr requesting a broth urine test to check my urine. He said he had never heard of it. I asked why since September i have constant sensation of uti. He shrugged his shoulders and said that is what ic is. I asked what can i do more. He said nothing. All the urologist wants to do is a cysto, hydro and biopsies and will not prescribe anything until i consent to it. I refuse to have it done as i dont think it necessary especially as i have presented with same symptoms since september consistant with ic symptoms. I dont want to make my bladder worse. Here in the uk we cannot swap doctors or urologists like in the us. So i am trying hard to follow ic diet religiously and research supplements to help myself. So frustrating and depressing. My marriage is going through a hard time because of this and i have been married for 40 years. I feel so much for younger people who have to survive this and keep their marriage going too.

                              Comment

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