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  • methotrexate therapy

    Hi everyone!
    Finally, after many months of discussion, my medical team decided to try me on methotrexate therapy.
    I know other ICers have tried this but there is so little information on the board and elsewhere on the net regarding methotrexate and IC and I would so appreciate anyone sharing their experience and/or knowledge about the treatment with me.
    Initially, my doc prescibed me 2.5 mg daily for 4 days, increasing by 2.5mg every 4 days until i felt some relief. If I was to reach 15mg without relief, I was to call him. I questioned him about the daily dose because i had only ever read that it was prescribed weekly and he said he would look it up but if he didnt call me the next day, i was to follow his treatment plan. I still was not convinced but when he didnt call, i was uncomfortable calling him, i felt it made me look as though i was ungreatful for his care. I called a friend who is a pharmacist and asked him if my dosing seemed reasonable and he said it did so i began on the treatment as prescribed. On the 5th day, I increased the dose to 5 mg. Later that day, my doc called and said that he had prescribed it incorrectly and that i should take the meds as prescribed but only once a week, not daily and that i should increase the dose every 4 weeks.
    By the 3rd day of the initial treatment, i felt very unwell. I was very nauseated, my bones ached wildly, my throat hurt, i could hardly rise from the bed. I understand that chemotherapy type drugs can have an effect like this and though disappointed that my therapy was going to be so uncomfortable, i accepted it because i would suffer ANYTHING to reduce the pain of my IC.
    When i heard that i had taken the equivilent of 6 weeks of drugs in 5 days, i was upset. He ordered immediate blood tests to ensure i did not suffer from the mistake and though my liver functions were askew, nothing untoward had occured.
    I am now taking 2.5mg for another week and then will increase to 5. Does anyone know what other ICers dosage has been before they have felt some results? I know everyone is different but I would like to have something to guage myself with. The docs seem to have no idea at all!!!! Again I feel like a guinea pig but not in a bad way, I am greatful that the docs continue to try and find some relief for me but i do feel a little frightened that they could get the dose so wrong when they are a team of professors and well respected specialists. I feel frustrated now knowing that my body handled such a large amount initially and now i return to feeling no relief (not that i felt any at all) and that it will take months to get back to that dose. I appreciare this is not a quick fix but i wonder now if they are not being too cautious
    Does anyone have any thoughts or advice. I would appreciate any input
    thanks in advance
    lisa

  • #2
    out of 19 people who viewed my post, noone could type a word of encouragement. Some people on this board can type in their toe aches and they will get 30 sympathetic replies. I would even understand this if i never posted a word of encouragement to anyone but out of 136 posts, i would say 120 at least would have been encouragement to others and the others, questions or pleading for some support which i have at times recieved but as in last nights post, sometimes ignored. Usually i would just stop opening this forum but i think it ought to be said... this is a lovely supportive site but as in real life, some people get support and others are left as outsiders. Please dont bother replying, i will not be coming back to see if i have guilt tripped anyone into saying, hey lisa, i cant help you but i am here and hearing you, i understand how desperate this condition can make you. I DO know how desperate this can make you, i didnt know how thoughtless it can make you.

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    • #3
      Lisa,
      I didn't answer before because I've never heard of this therapy for IC & I was hoping that someone would answer who did know of this & might have something more helpful to say. And that is what you started out your post asking for, answers from people who have been through this.

      What I can say is that I am sorry that you are in pain and that a second opinion is never a bad idea, especially if a treatment plan is not going well.

      Hoping you are feeling better soon-
      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!

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      • #4
        The word "methotrexate" caught my eye, because I am on it for RA. I am sorry no one answered you yet, but it could be because most people are not familiar with it. I have never heard of it being prescribed for IC, and it really has not helped my IC any. But it does relieve RA some. It did make me nauseated at first, but it is much better now. I can see where you would have major problems if you took that many. WOW!
        Hope you're feeling better, they should take a blood test for liver function every month.
        Take care,
        Bianchi

        Comment


        • #5
          I am just seeing this and I also don't know about this for an IC treatment but have heard of it for RA.

          I do hope it helps your IC and if not you will find something that does.
          Jolene

          "Life is what happens when you are making other plans" John Lennon

          IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

          Information for Patients can be found here.
          http://www.ic-network.com/patientlinks.html


          Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




          Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

          "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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          • #6
            I'm sorry for the lack of responses, but I am not familiar with this med, either...but because of that I read your post. I hope you stick around, all of us have had posts that don't get a response, sometimes for many days, if ever. It's always good to post something, even if you don't get a prompt response...you may be helping someone else, even if you don't know it.
            I was shocked that your dr made such a huge error on the dose of this med!!! He should consider himself very lucky that it didn't create a life-threatening situation for you.

            Comment


            • #7
              Lisa,

              I was on this board off and on all day and I swear, I never saw this post once. And I was on about the time you posted it. I don't know if there can be flukes in when posts show up or anything, but I know I was surprised to see that you hadn't received any replies. I know how that can make you feel as it has happened to me and I've seen it happen to others, for days.
              I honestly don't think anyone was being heartless. I just think if one doesn't recognize the name they might not open the thread since they may not feel they have anything to offer.

              I hope you feel better and I'm sorry you had such a rough day.

              Sincerely,
              Moonheart
              http://www.TheCraftyEwe.etsy.com

              Comment


              • #8
                Lisa, I'm sorry I didn't respond earlier - I have been off the boards due to severe depression (I am spending a lot of time huddled up under the covers trying to feel "safe" lately.)

                I am taking a similar drug called Cyclosporine-A, and I experienced a lot of side effects on that, too, when I first started. Now I don't seem to have many side effects at all that I can notice, but that first month or so, was really rough. I felt so sick! So I can well imagine that you are feeling very very sick and really suffering from the methotrexate. To be honest, I don't know anything about that medicine except that my urogyn told me once when I asked if I could go on that instead (because CyA caused my kidneys to start going belly-up and we had to decrease the dose and my pain partially came back, which upset me) he said he would rather have me on CyA because his impression was that methotrexate was even more toxic than CyA. So I don't know, maybe he didn't know anything about methotrexate, he's a urogyn and I expect he hasn't had much experience, but I always remembered that comment.

                If you would like, if you are curious about CyA and the side effects (I really think they might be similar to methotrexate?) there is a section on the boards with all our old posts. You have to go down to the bottom and indicate "from the beginning" because it defaults to something like the last week's posts or something like that, but anyway it's a lot of reading if you are interested. There were three of us on CyA at one time. As far as I know, I'm the only one on the boards still on a (lowered) dose of CyA.

                I hope that you feel better very soon, and that the side effects go away, and that this totally takes away all your IC pain and bladder symptoms.

                Blessings,
                Lori

                Comment


                • #9
                  Re: methotrexate therapy

                  This is a super old link but thought I'd give it a try. I have been on methotrexate for over 15 years low dose injectable got ra but it seems to help my ic too. Recent. Anger diagnosis and I was told not to take it anymore. As soon as I stopped that and estrogen had a hysterectomy all hell broke lose.
                  I'm a mess now.
                  Did you ever get relief from methotrexate?

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