Tweet
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
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
Comment