WHAT IS YOUR MEDICATION COMBO FOR IC

[ihateic2003]

Dear fellow IC sufferers:

1. I want to know how many of you taking oral Medication for IC.

2. How many of you having bladder Instilllations. (like DMSO & all) How long you have been having this treatment. how often you go to doctor's office.

3. do you ever feel whatever you are having treatment it's not working after a while. I feel that way now. I am having a very hard time to control my symptoms now. My Uro change all my medications now to see if i feel better on that. Iike My Antidepressant, Antihistamines & my pain medications. he think what i was taking earlier stop working now. My system use too these medications & now it is time to start Change to diffrent onece. i want to know how many of you feel that way like i am feeling now.

[Nicole in ATL]

Sorry you are going through a hard time right now. I hope your new meds work for you.

My meds are hydroxyzine (atarax), elavil, oxytrol patch, percocet and ditropan as needed. Also, cipro every time I have sex and prelief with acidy foods.

I have had 1 bladder instill (not DMSO) during a cysto/hydro in June 2003. My frequency and urgency become much worse after this procedure (I know this is not the norm).

I am still struggling with getting my symptoms under control. I am worse now than I was a year ago. I have been taking elavil for about 6 weeks. Not much results yet, but praying it will help.

Hang in there,
Nicole

[tillysav]

Sorry you are having a rough time. Have you tried Elmiron? And, if so, how long did you take Elmiron and other meds?

My history on medication is short, as I was just diagnosed with IC in November 2003 using the cysto/hydro procedure.

My meds are:

Elmiron 3 x day-bladder
Toframil-IC pain/sleep (haven't started taking yet)
Milk of Magnesia-IBS

I still have IC pain/frequency and constipation from IBS, but feel a little better. It may be to soon to tell if my meds are making a difference because I am still in the trial & error phase. My doctor (and from what I read) all suggest 4 to 9 months to see improvement.

Everyone seems to respond to different meds and in different time frames.

[ihateic2003]

tillysav,

Yes, i am still taking Elmiron 300mg. 3x day. Elmiron helped me but not anymore i think. My Uro want me to take it anyway for while.My frequency and urgency become much worse these day.

[carly]

Sorry you are having a tough time. I couldn't take Elmiron, I have tried many anti-depressants and nothing helped. I tried DMSO, again no help. I tried interstim, did not work. I currently take pyridium plus, hydrocodone and the IC diet.

[UNCJessi]

I was wondering...do any of you guys know... Since IC is diet responsive, is it not safe to say it is medication responsive? In other words, I wonder if the reason some of you guys have so many problems still is BECAUSE you are on so many meds. Does anyone know if a doctor has done a study on this. This definately makes sense...our bladders may be irritated by certain medications. I take Elmiron, and only Elmiron, and this has helped. Of course, everyone's IC seems to be different. I just think this may be something to consider... I hope that you guys can all find a combination that gives you relief. Like I said, I only take Elmiron daily. I have Atarax--as needed--but have not used it yet. I was diagnosed with IC on Jan 14, 2004. So I am new to this...not to the IC--which I now realize I have had for 9 years
~Jessica

[Iris]

Sorry that you are going through such a rough time right now. I am on oral meds, Elavil, Effexor, Ultram for pain when needed and Ambien for sleep. After my diagnosis, I was put on several meds that did not work for me, was offered DMSO for six weeks, but I said no, and we tried the previously mentioned combination of meds, and so far so good. I have miniflares, but nothing like the ones I was experiencing. I have check up visits every two months with my Nurse Practitioner, and my Urologist once a year unless I start having problems, with the meds, or extreme pain then when needed. So far, fingers crossed, everything is working, and I am able to live a fairly normal lifestyle, Take care Iris. hi hat

[Dixiefireball]

sorry you are having it tough right now hope you feel better soon. i use klonopin lexiapro leviquin heparin marcaine perocet 10.325. grouphug

[ICNDonna]

I couldn't take elmiron due to side effects.

My major treatment for the past 29 years has been hydrodistentions, along with bladder instillations.

I am currently on a DMSO schedule of one treatment per month, which seems to do well for me. I started with eight weekly treatments before moving to the monthly schedule.

I also have pyridium on hand, pain medications to take as needed, and phenergan to prevent nausea any time I take a pain med. I also take a prescription potassium supplement, and a couple of meds for high blood pressure.

--- And I feel good most of the time.

Donna

[arcticfox]

I am currently on DMSO treatments once a week. They have worked for me pretty good, except I really have to work on the my IC diet. I am human and I do eat or drink stuff that is bad for me. For example, too much frozen yogurt is a bad thing! (I had it 4 times (4 days) in a row! I suffered, let me tell you! I had to reach for the Pyridine! So with trial and error I am still learning what not to eat and what I can eat. I also have prelief which helps me as well. Although I have to watch how much I take as I get constipated and I have already had a case of hemmoroids because of it! Not nice :-(

Arcticfox

[threewins]

My Daughter (6) takes ditropan xl, atarax and uses prelief and pyridium when needed. Her frequency is so much better even with a uti. Diet is hard for her too, she does better with it than I would be able to though! All the birthday parties with pizza and chocolate cake are tough! I hope you feel better soon.

[Zipper]

Someone mentioned that medicines may also be irritating just as diet is. I agree with you. I wish I could remember where I read it, but many of those pills we take contain artificial ingredients such as colors that are irritants. So, while the medicine itself may be okay--the little shell sometimes contains things that wouldn't bother most, but would bother us.

I currently use the oxytrol patch, Elmiron 3x per day, aloe supplements from www.desertharvest.com, (http://www.desertharvest.com,) Nitrofurantion (Anti biotic to keep out infection.) Vitamins A & E & B6. Also, Vicodin or Ultraset for the pain as needed.

I've been taking the Elmiron for 9 months and I haven't had any relief from symptoms. If anything mine have gotten worse.

I've tried EVERY other medicine I've ever seen posted on these websites/webboards with no results. Only thing I have tried are the DMSO instillations. But, my doctor said my body wouldn't tolerate them. I wasn't able to do the cysto in the office (couldn't even get close). So, the DMSO isn't really an option for me.
I do have the interstim implant and that helps to an extent. It helps with how many times I urinate, but not necessarily the pain.

Hope this helps--

[vm]

I am on Elmiron, Vistaril, Detrol LA, Elavil, and Lexapro. :)

[dyno]

I take Elmiron, Vistaril, detrol prn and watch diet and use Prelief.

[rachelm]

I'm on Elmiron 400mg, Neurontin 300mg, Elavil 50mg, Attarax 100mg, Zanaflax 4mg, Celebrex 100mg, Yasmin (B.C pills), Zoloft 50 mg, and then Morphine 30mg prn for pain, Pyridium prn, and various antibiodics when I have an infection currently levoquin.

I also get daily Heparin/Marcain/ bisodium carbonate bladder instills.

Am getting the test interstim this week.

Rachel

[Cali girl]

I am currently taking Elavil, Elmiron, Detrol LA and Atarax. I also take Prelief before some foods or drinks. So far this has worked tremendously.

Cali :)

[MakinIT]

Holy moly Rachelm!! How do you do 100mg of Atarax without drowning in your own drool? They had to reduce mine but I extremely anithistmine sensitive.

Anyway, ihateic, I take (at the moment...could change withthe blowing wind) 25 mgs atarax, 30 mgs MS contin 3x/day, 5 mg valium 3 times /day, topamax 50 mg, lexapro 10 mgs...

I also take prerelief when I know I'm going to consume something nasty or that coffee just smells too awesome.

I have a variety of supplements/vitamins I take...sure helps my blood work. My doc says my blood work is better than 99% ofhis patients...It includes Quercitin which is a natural antihistime. Ionly take 500mg because I also take the atarax. But, it doesn'tmake me sleepy....for bladder help I take zinc, Co Q 10. I have a bunch of others that are just for general health. I make sure they don't interfere with my reg. meds.

Treatments: inflation , cysto, : pretty much did nothing but cause pain

PT/Pelvic Floor work: awesome...specially if your pain has you house bound and weak. It strengthens you.

TENS: I like it. Just remember not to grab the pads with your fingers, and not to let the stupid things get caught in your pubes! it hurts like heck. eek

Back brace: Nice...helping me for long walks, shopping etc..

Butt pillow from IC store. VERY COOL for the car. definate thumbs up. Need to do it. It absorbs all those nasty road bumps my less than luxiourious Ford Ranger absorbs. Yowie;

Doc wants me to try to DMSO..I'm very reluctant. They also are going to do the Nerve Thingy. I will allow it if I am relaxed and don't know.

That's my history. That's Been since about Julyish. blink

bye....Tracey

[rachelm]

Tracy,
I started off with 50mg of attarax for about a year. I take it at night and at first I got a nasty hangover type feeling every morning but gradually it got better. I was usually out within 15 min. of taking my night meds. but now they don't knock me out so quickly. During my first flare of this season my uro suggested that I up my attarax to 100mg. I was very hesitant so I waited until I had several days off work to experiment. At first I only did when I didn't have to work the next day but now I do it all the time. I don't know if it is helping because I'm in the midst of a bad flare that nothing seems to give me relief except for pain meds for a while. I hope in the long run it will prevent seasonal flares.

[sadgirl1950]

what is test interstim? new at ic

[sadgirl1950]

thanks so much do they usuallaly wait til u have been on elmoron for a year befor they try dsmo?

[Katrina]

I am on 600 mg of Elmiron, antibiotics, Hyoscyamine, GERD Meds-Prilsec OTC, Calcium, Neurontin.

I am doing DMSO

Yes I feel treatments help and then don't help so much for me.
Searching for more treatment atm.

Hope you all have success with your treatment

((hugs))

[Sarojini]

For IC: 600 mg/day of Elmiron, 25 mg Atarax each night, 0.4mg Flomax at night, 15 mg MS Contin 2x a day (with option to take 30 mg 2x a day if pain is bad), Lortab 7.5's for breakthrough pain, Pyridium as needed for urethral burning. In addition I'm starting PT on Sept. 1 for PFD -- we'll see how that goes. I have had 1 hydro, and 10 DMSO instills in the past, but neither seemed to help that much, so right now I'm not doing them.

For chronic myofascial pain: 4 mg Zanaflex as needed for muscle tightness/soreness, Lidoderm patches for superficial pain as needed, lidocaine trigger point injections at doc's office periodically.

For asthma/allergies: Advair 100/50 2x a day, 10mg Singulair at bedtime, Combivent inhaler as needed, Nasonex nasal spray 2x a day, Clarinex as needed (although I don't use it as often now that I take Atarax at night), allergy shots.

Other: birth control pills, Maxalt for migraines as needed, and on Sept 1, my therapist has arranged an appointment with her psychiatrist colleage to get me on on some meds for anxiety disorder. I don't know what they will be, but hopefully they will help me quit worrying about everything continuously :)

That is a lot of pills. YUCK :(

[robynIC15]

I'm so sorry that you are feeling this way. Yes...I have gone through the very same things. I have had IC for 15 years. I have had several DSMO treatments-14-and they really didn't help. I seem to be at the same place you are. I now take several oral pain meds but feel that I am almost immune to them. I live with daily pain and son't stop trying until I find help. Good Luck, honey. Don't give up!!

[mayray518]

I was on DMSO for a year and it worked but then my system became immune to it. I have now been on elavil for 6 years (working down from 50 mg to 5 mg) and am doing great.

[Sharon]

I have had IC for 17 years. I just follow the IC diet.......most of the time. I have my share of symptoms, but they are more often than not, mild. I had to follow the IC diet very strickly for about 4 years because my pain was so bad at one time, but I think following the diet helped my bladder heal some, and allows me to cheat here and there now with a lot less pain. I tried Elmiron, didn't work for me. I use a birth control pill, which I think may have helped make my bladder just a tad less touchy.