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Hello,
I am in the midst of having a flare. I had a bad one recently for a few weeks, then was good for a 2 and a half weeks, and am now back to a flare. My doctor had to increase my pain medication because it is so bad. They recently added gentamicin to my instillation mixture so that I would have an anti-biotic present (to make sure there is no bacteria to cause an infection, and to help treat some of the symptoms). I was wondering if anyone had any luck with having the gentamicin added to their instills or if it helped in any way. I am on day 2 and kind of see an improvement, but not sure. I was checked for an infection previously this week and my cultures and everything came back normal. I go see my uro on the 23rd to talk about these new hydrophilic catheters that they are getting in (hopefully it will help me), and to talk about medication. I think they may want to increase my dose of neurontin.
I was also wondering if anyone had any luck with addition of a steroid to their instills, and if this is something I should bring up with my uro. I feel like I need better pain control. I know the instills help, because if I don't do them then I am worse than ever. I just need better control through the bad flare times, which seem to be happening more and more. I'm just scared that I will never see a light at the end of the tunnel. My bladder instillation is shown in my signature (now with the addition of gentamicin).
Just need some hope through these dark times.
Erin
I am in the midst of having a flare. I had a bad one recently for a few weeks, then was good for a 2 and a half weeks, and am now back to a flare. My doctor had to increase my pain medication because it is so bad. They recently added gentamicin to my instillation mixture so that I would have an anti-biotic present (to make sure there is no bacteria to cause an infection, and to help treat some of the symptoms). I was wondering if anyone had any luck with having the gentamicin added to their instills or if it helped in any way. I am on day 2 and kind of see an improvement, but not sure. I was checked for an infection previously this week and my cultures and everything came back normal. I go see my uro on the 23rd to talk about these new hydrophilic catheters that they are getting in (hopefully it will help me), and to talk about medication. I think they may want to increase my dose of neurontin.
I was also wondering if anyone had any luck with addition of a steroid to their instills, and if this is something I should bring up with my uro. I feel like I need better pain control. I know the instills help, because if I don't do them then I am worse than ever. I just need better control through the bad flare times, which seem to be happening more and more. I'm just scared that I will never see a light at the end of the tunnel. My bladder instillation is shown in my signature (now with the addition of gentamicin).
Just need some hope through these dark times.
Erin
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