new plan for me :) - Interstitial Cystitis Network Support Forum

holles · 08-27-2004, 06:06 PM

my gyn had the urology journal article and told me he wants to start me on the doxycycline regimen for a month. dh has to do it too to make it work. we're following exactly what was done in the study, so i hope it works. the study said there was a 70% cure (or major relief of symptoms) rate. i'm hopeful i get very lucky with this.

one question though. do i continue the elmiron? or can i stop it? it's making my hair fall out. what do y'all think?

Annie2 · 08-27-2004, 06:43 PM

Holly,

Good luck with this treatment! I brought this study as published in the July Journal of Urology to the attention of my urologist and he agreed to my giving it a shot. I finished the treatment (exactly as presented in the article) last week and saw my urologist yesterday for an evaluation. One week after completing treatment I am having a small flare. I did have 2 absolutely wonderful pain-free days before this flare started. I have no idea what triggered this flare as I haven't strayed at all from my diet. I suspect it may be because I felt so good for a couple of days and was very active. Did this treatment "cure" my IC or put me into remission? No (RATS!). I would say I am a bit better than I was 2 months ago, however, and this flare is minor compared to flares before this treatment.

I am aware of several of us who were trying the Doxycycline Treatment but have not heard of anyone else's results yet. It would be interesting to read about the experience of others who have completed this treatment. How about we use this thread to post our results?

Anyone else have results to share?

Hope this works well for you, Holly!!! As for continuing Elmiron....I can only say I did continue my regular dose throughout. If you are having a problem with Elmiron, you probably should discuss it with your doctor.

Annie

kelly McC · 08-28-2004, 02:41 AM

Good luck Holly hope it helps you.
Huggs,
Kelly

dawn217 · 08-29-2004, 10:16 AM

Hard to say. But the doctor that put me on antis for this told me that Elmiron is useless. I don't necessarily agree and take it sometimes, although not consistently.

donutgirl · 08-29-2004, 10:52 AM

Good luck Holly...please let us know how it works for you.

Dawn217....It can take months for the elmiron to work. In order for it to be at a consistent level in your system, you should take it as prescribed.

vm · 08-29-2004, 11:37 AM

Dawn - Your doctor told you Elmiron is useless for all IC patients??????

holles · 08-29-2004, 12:15 PM

well, i decided to keep the oxytrol patch going because until the antibiotics work, i don't want any problems with incontinence anymore. doc said it would be fine to stay on it. but i did stop elmiron. only because i noticed my hair was falling out (thyroid was normal, so i'm sure it was elmiron causing it). i've been on elmiron since april and only noticed a worsening of problems. in a few weeks, i'll probably drop the oxytrol and see what happens.

so far, the only thing my husband and i have noticed is lots and lots of nausea. and we're exhausted. but the fatigue could just be that we've been super-busy. the nausea sucks though.

but we'll live.

when am i supposed to start seeing results?

also, instead of the vaginal tablets that were used in the study, my gyn gave me gynezole. he couldn't find the tablets in the PDR, but one of the pharmacies he called said gynezole would substitute. that's the only thing different we're doing. i hope it doesn't affect anything.

dawn217 · 08-29-2004, 01:02 PM

VM-Yes, but that was only one of the many doctors I've seen. If it's helping you and others, great. This particular doctor, believes most have an infection of some sort.

Indy · 08-29-2004, 06:03 PM

I completed to doxy program 3 weeks ago-my hubby too.

Unfortunately, I got a UTI from taking baths (I just started that) so I didn't get a chance to evaluate the doxy.

I did go off installations and elmiron taking the doxy and didn't feel any worse-in fact, felt better.

holles · 08-30-2004, 02:57 AM

indy,
did you or your husband have any problems with nausea? we are having a terrible time. it's not as bad in the evenings as it is in the mornings. and the meds say to take them without food or milk. does it eventually stop happening or will it be like this the whole month?

sorry about the UTI. i will stay out of the tub.

dawn217 · 08-30-2004, 04:10 AM

My dr. said that you can take it with some crackers or toast. Just no dairy. I got a lot of nausea too.

Indy · 08-30-2004, 05:30 AM

We both had no problems with the doxy other than the inconvenience of new prelief within 2 hours.

You can take it with food. Look it up on WebMD.

I took one pill in the middle of the night when I got up to pee, and that was on an empty stomach and one halfway between lunch and dinner.

Good luck-also you need to take something for yeast. I took nystatin every day.

holles · 08-30-2004, 05:57 AM

thanks for the tip, indy. my dh took his today with 2 big glasses of water and said he felt better. so i might try that first. i just don't want to take any risks of not getting the full effect of the meds.

as for yeast, my gyn prescribed gynezole. the article said hexetidine, but he couldn't even find it in the PDR. a pharmacy he called said gynezole would work the same. he gave it to me to make sure there were no bacteria in the vagina that could be causing a problem too.

if this treatment works, my doc and his wife (she's the urologist who told him about this) both get lots of cookies.

slept through the night last night, but i think it's the oxytrol. it's starting to work too.

BethW · 08-30-2004, 06:49 AM

Hi Holly, I'm glad you found something, I hope it will work for you! It has inspired me to find the article and to show it to my uros as well. It's worth a try. Let us know how it goes. Beth