One more thing before appointment.........

[indiana]

:rolleyes:

It's 7:15 in the morning and I am getting ready for work but wanted to see if I had anyone write with advice. Thank you everyone who responded. I have to admit I'm still freaked out but wanting to get it over with. I guess I'm feeling that I hope I DON'T react to the Potassium because then that means I don't have IC, most likely? But then, if I don't have IC, what IS wrong with me???? Ugh.....

Another question I have. I see that a lot of you know your meds pretty well. Can you please write to me and let me know what meds you are on, how they are for you, what they do for you and would you would recommend and not recommend? I saw one thread where a woman said she gained 40 pounds on one medication........I just lost 25 pounds so I'm really not wanting to put any weight back on! : ) Right now they have me on Ditropan XL, that's it. I have been taking double the medication so I'm taking 10mg a day. I guess it's helping, I really can't tell at this point. I went to the bathroom 3 times last night which is pretty much my normal.

Any info you can give me would be helpful.

Thank you everyone again and I will write after my appointment to tell you how it went.

Indiana

[Sarojini]

Hi Indiana,

Just like we're all different with symptoms, we are all also different in our response to medications... one person may react one way to something, but someone else may do just fine on it. Case in point -- you're taking Ditropan 10mgs right now. When I tried Ditropan/Detrol/Oxytrol patch (all of the drugs for frequency/bladder spasms) it didn't work and made me retain urine very badly, since I have a tendency to do so anyway. Your best bet is to discuss everything with your doctor, so the two of you can design a treatment plan that is very personalized and right for YOU.

That said, currently I am taking Elmiron (300mg, 2x a day), Atarax (25 mg at night), Flomax (0.4 mg at night), MS-Contin (15-30 mg, 2x a day depending on how severe pain is), Lortab 7.5/500 for breakthrough pain, Pyridium as needed for urethral burning, Zanaflex (4mg) as needed to reduce muscle spasms (I take it for chronic myofascial pain syndrome but find it can help my bladder/pelvic pain too), and Klonopin (0.5 mg 2x a day -- again, I take this for anxiety/panic disorder but find it reduces my bladder spasms too!!)

Like I've said, I've tried meds in the past that didn't work at all for me... these included Ditropan/Detrol as I said, Urised, Urispas, and I even did 10 DMSO instillations which at first I thought were going to work but ended up being very disappointing.

You just need to do this by trial and error -- if you indeed do have IC, then you'll work with your doctor to find the combination of meds that help you out. Don't give up until you get there!!! :)

[Babs RN]

Let's see... my meds have been in a little bit of transition...so these probably won't be around long pending my appointment to Loma Linda. I take Percocet 1 or 2 every 4-6 hours as needed for pain, Demerol 50 mg 1 every 4 hours as needed, Septra DS for what seems like my millionth UTI, Valium 5-10mg every 8 hours and Trazadone 100mg at bedtime. I am in the midst of one of my worst flares since my diagnosis but this combo is helping. I tried the Ditropan route too, and it made me retain as well. Of course figuring out the right combination is a partnership between you and your MD.

Hugs,
Barb :)

[theclownster]

Hi there! I agree with what the two previous ladies have said. We are all different and it just takes time to discover what will work best for you.

On a positive note, I do respond well to ditropan XL - I was on 10mg but the doc just increased it to 15mg - I take it in the evening as I believe the nighttime is my worst time of the day. I also take Atarax (antihistamine) 25mg at bedtime, Elavil 25mg at bedtime, and birth control pills. I have found that on the week of my psuedo period my symptoms flare - so when I go back to my primary care doctor I want to ask for Seasonale - in attempts to minimize flares. I was not originally taking the birth control pills for IC - but definitely think it helps. Additionally I use prelief (not a medication) with meals and meds. I did take Detrol (similar to ditropan) for a period of time, but retention was an issue. I still can mildly retain from time to time, but as long as I'm drinking lots of water, it doesn't appear to be a big issue - which is good.

I hope this info helps. Again, please consult your doctor and find treatment that works for you. I think something I have learned since this whole process started is that I am the only person who can advocate for my needs - which includes telling the doctor when I'm not feeling well on the meds he's prescribed. A good doctor will respond accordingly and find something that will help.

Good Luck and Take Care!
Warm Regards~
Jennifer

[Katrina]

Good luck with that Potassium test!
For me I am on Elmiron I take an antispasmodic: Hyoscyamine....I find my GERD meds that reduce acid help as have my antibiotics. My pain meds Neurontin and Codein help. I also use Prelief, the diet, and meds for gas. I just started CystoQ and Aloe Vera which I have a lot of hope for. I am also doing Heparin installations ...have a little bit of hope there too. I do a lot of things for pain when I flare. Good luck!