Has ANYBODY found any decongestant that they can take that doesn't flare their IC. I have this horrible cold and my head feels like it's full of gunk, I have post nasal drip, I'm just starting my period and I'm pretty sure this is going to flare me. I don't want to make my bladder worse but this cold is killing me. Any suggestions would be appreciated. Thanks!
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Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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I don't have any suggestions, but I feel your pain. I have been flaring for about 3 weeks now, and after reading some post, I didn't take my hydroxyine last night thinking that was causing me to hurt so bad, well, I woke up with gunk all in my eyes, nose running and terrible sinus headache. I just went to walgreens and got allergy eye drops, and rapid release tylenol, but, I didn't wake up with the pain I have been having, haven't even had to take my pain meds, can you believe it, it is 9:30 and usually or at least for the last several weeks I have had to take them as soon as my feet hit the floor. I had just started back taking the hydrox about 3 weeks ago, so maybe, that was it, or maybe it was just a fluke, who knows????Comment
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Sorry you are feeling so bad. Ugggh, I had the big nasty cold about a couple months ago. I could not breathe through my nose at all. I always take theraflu and it works wonders, but this last cold I did not take it because I was so scared it would make my bladder worse. So I just stuck it out and did not sleep for three nights. It sucked, but did get better after a few days. Good Luck hon and hope you feel better soon.
JenComment
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Alright girls, keep your fingers crossed for me. I can feel the flare coming on, so I called and left a message w/ the nurse at the uro's office and asked them to PLEASE give me some pain meds. He told me when I saw him the last time that he thought the Elavil would help so much that I wouldn't need pain meds. Yea right! I am totally scared to go the whole weekend w/o anything and no offices open. I hope they call back and take pity on me.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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claritin
no problems w/ clarition
but i hear clariton d is the trouble.Quit ELMIRON due to hair loss
Cystoprotek ROCKS!
find me on FACEBOOK -
search my email [email protected]
Current Meds:
AM Cystoprotek & ATARAX 50mg
Dinner CYSTOPROTEK
PM Elavil 25mg
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The only problem is that to help with congestion, you have to take a decongestant. Antihistamines alone wont help at all with stuffy nose and congestion. I know this sucks when we get a nasty cold. The last one I had, It was torture. I was sooo congested and could not breathe at all through my nose. I was so afraid to take anything though as I hear it can cause the IC to be worse. Maybe this is not true for everyone though. I guess you would have to try it and see. I really hope you are feeling better Christine and that your bladder is not in to much pain.
JenComment
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Thanks Jen, the congestion is gone but now I have some kind of throat infection. The dr said it's not strep but he thinks it's infected from how red it was last night. So now I'm on a 7 day course of antibiotics and my bladder is KILLING me because I have my period. This is the second day in a row that I have called out of work. Almost all of my paid time off including vacation time is gone. I just couldn't go in today with my bladder hurting this bad. I'm sitting here with the heating pad on waiting for the vicoden to kick in.Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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Hey Christine.
Ugggh, I am so sorry you are feeling so bad. My hubby is real sick to. He has a nasty cold that went into a bad sinus infection. I am praying I dont come down with it. I always come down with everything it seems though.
I hope the vicodin kicks in soon. I wish I could take a pain pill now and then. The last one I took, which I belive was norrco(hydrocodone and tylenol), it made my stomach soo sick. It also made me have a hard time to pee. Now I am terrified to take any pain meds after how sick that one made me.
I am sorry you have your period to deal with on top of all this. I am getting my period as well this week, it is due Friday. Yuk, It always makes me flare like hell. I also have to wait for my gyne to call me today, as I think I may even have a bacterial vaginosis or yeast infection that has to be treated. I had the culture taken in Saturday. The last time I had to use that clindamycin vaginal cream, it put me in a severe flare with the IC. So I dont look foward to that, and I cannot even take any pain meds. This sucks.
I hope you start feeling better real soon Christine.
Sending Big )))) gentle((((( hugs your way.
JenComment
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for decongestion, I plaster on the vicks vapor rub... I know sometimes the congestion is too bad for that, but Vicks is my first treatment because its not an oral med.Comment
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