New doc, new meds...

[A.J.]

I saw a new doc today because it seems that no one else is truly helping me. He's fairly young and seems so well-informed about IC and just about everything related to urogynecology. He prescribed me Elavil, Utira-C, IBuprofen (instead of the Vicodin I'd been taking), starting up physical therapy again, acupuncture, and "uterine massage." Phew! A lot to take in for the first visit. It was an extremely tough day because I've been having one of my worst flares in years and I just wanted one concrete answer, you know? Even though I knew I wouldn't get one, I always get my hopes up before seeing a new doc.

I've read the horror stories about Elavil, and since I've gained 40 pounds in the last 2 years, I refuse to take it if it causes ANY weight gain! Should I try it or avoid it like the plague? And has any tried Utira-C? Yep, it's making my pee blue! I don't have a UTI but he wants me on it for some reason. I'm still wondering how long I'm supposed to take it for. I guess I should call!

I used to have PT but my therapist stopped taking insurance so I stopped going to her. I think going to another with help. I've never tried acupuncture but I'm crossing my fingers. He also wants me completely off soda and tea, and I know I should have earlier, but now I'm stumped on what to drink. Soda has been my only addiction ever! :bonk:

Bascially, any comments, suggestions, etc are greatly appreciated. I seem to be one of those IC patients that don't respond well to many treatments. I actually think it has been getting worse over the past 6 years. Sigh. I'm hoping something new will help. Thanks everyone!

[ICNDonna]

The only potential problem I can see is ibuprofen --- many ICers find it irritates their bladders. You didn't say what dosage the elavil is --- it comes as low as 5 mg and can help with pain even at low doses.

I hope the new medication regime helps. Stopping the tea and sodas will probably help more than anything.

Warm hugs,
Donna

[SandyRN]

I agree with the Ibuprofen. I am one of the lucky ones that can take it, but most IC'ers can't tolerate it and it makes their flares worse. You might want to use it cautiously at first to see how you react to it. I haven't tried the Utica C but it sounds similar to Urised which also turns your urine blue. I read that it also has hycosamine in it which is a smooth muscle relaxer to keep you from having bladder spasms and it also helps with urethral spasms.

Here is a link I found on the med:

http://www.webmd.com/drugs/drug-148300-Utira-C+Oral.aspx?drugid=148300&drugname=Utira-C+Oral

I know a lot of people have had huge success with Elavil. It's up to you which you prefer, some weight gain which may or may not happen to you, or possible pain relief that many IC'ers get from the Elavil. I know that's a tough decision when you've already gained weight. I understand, believe me.....but I think if it were me I'd give it a try. There's no guarantee you'll gain weight from it, not everyone does.

Sounds like he's informed and trying to help you, but again, I'd question the ibuprofen, or at least use it sparingly to begin with and see how it does for you and your bladder symptoms.

I hope this is the doctor and medication plan for you!

Hugs, Sandy

[leelee88]

Elavil did cause me weight gain..BUT I was in SO much pain I could care less at the time. I needed relief! And it did get my IC pain under control. I have since switched Tofranil and it has not caused any weight gain. It works almost as good as Elavil.

[A.J.]

Thanks everyone for the response. I tried one Elavil (5mg) last night and it made me feel awful. I felt half asleep or in a daze of some sort. I had trouble reading anything and I felt like my brain was in the clouds! Most of all I was starving. Not just hungry, but all I could think about was food. It was then that I realized it wasn't going to work for me.

As far as I can tell, the Utira-C and IBuprofen are not working, because that pain has become worse. Much, much worse. I liked him and all, but I'm thinking that I shouldn't be worse after seeing him. Is it the new medicine? The exam he did? Just that I'm still PMSing and the pain won't subisde until it's over?

I don't think I've taken enough IBUprofen to have that much of an effect, but if it's not good for most ICers, I can suspect that I'm one of them. Gosh I am so frustrated right now. I'm supposed to feel better from the doctor's orders, right?! :dizzy:

[milliecowe@hotm]

Hi AJ,
Like you, when I first started Elavil, it made me feel like a zombie, so I discontinued it after a few days.

Then, months later, after trying other options that failed to reduce pain, I decided to give the Elavil a try again. The weird, spaced-out feeling goes away as your body becomes acclimated to the drug. I started out on 5mg, then gradually increased the dosage to 25mg. It took 3 weeks before I noticed a difference, but it was worth the wait, because the Elavil decreased my pain level by 80%. So, I'm definitely an Elavil fan!

Yes, weight gain is a side effect. But I was able to lose the weight I'd gained by following the Weight Watchers program, and was able to be more physically active because I felt so much better.

I know everbody's different, and you have to do what is right for you. But do consider sticking with the Elavil if you can.

[systitis]

I'm a tea lover and I solved the tea dilemma with powdered Prelief. (Prelief tabs didn't really work for me.)

I use loose tea and put the tea leaves in my warmed tea pot. Then add powdered Prelief, finally add the boiling (or hot in the case of green tea) water. Let steep & drink.

The powdered Prelief dissolved completely & does not change the taste and it's completely solved my tea issues. I can drink tea now with no problem.

I know not everything works for everyone but perhaps this might help. I hope so.

[TexasHoney]

Elavil works pretty good for me. I use it only as needed when I can't sleep. I cannot tolerate ibuprofen at all. It makes my bladder very angry.

[alycat]

I tried to do Elavil, but I got weird mental symptoms (I got really, really depressed on it) so I don't take it anymore. I'm one of those who can't do ibuprofen. Still looking for a pain med...

Here's my question...What the heck is 'uterine massage?' I'm intrigued as a lot of my pain is referred to my urethra, so maybe that would be a possible treatment.

Oh, 'nother question. Is acupunture covered under your insurance? I want to try that too sometime, but I'm not sure if it'll be covered...

[snowgirl]

Some insurance companies cover massage and accupuncture and some do not. Mind does not because I would in a minute try accupuncture for IC, depression ,anxiety all of it. I have never heard anything negative about accupuncture. Massage is also great for IC pain for me especially massage of sacral nerve area. Check with your insurance company ask what your deductibles are for each one. And very important ask how many massages am I allowed a year and how many accupuncture sessions am I allowed a year. If so do your research find a good place to go. Our hospital has a fitness center with all this type of therapies . If they pay for it go for it. I would try the accupuncture first. Too bad my old insurance co paid for it then we switched a year ago and no they took the services away from us.

Good Luck. I hope you can enjoy these services . VIcky

[snowgirl]

what kind of weird mental symptoms did you all get on elavil. I have never had a problem spelling but lately when I am on this computer I can't spell a word correclty that I could before or I have to stop and think. Something has changed. I think someone said this am it like and elavil fog and is normal.
VN

[lnseagraves]

AJ,

I have not personally tried most of the drugs/treatments you are asking about so I won't weigh in on that, but I did want to respond to your question about increased pain after your doctor's exam.

I want to reassure (if that is the right word) that I ALWAYS have increased pain after doctor's exams of my pelvis. I prepare for them for days in advance, pampering my body like it is in a flare (even though it isn't) so I'm not experiencing bladder pain before the exam begins. I'm ALWAYS in pain before I leave the office. I cannot tolerate any pelvic exams. I'm still recovering from my annual two weeks ago, and I was basically in a short remission before I went to the office.

So, your increased pain could be from the meds he gave you but I'd find it as (if not more) likely that it is from your exam.

[alycat]

Pelvic exams are the worst. I had a pelvic done before I was diagnosed and while I was in a flare (Which I didn't know at the time). Trust me, it hurt! So it's probably the exam that's making you hurt.

My side effects when I was on elavil was stomach irritation, (which I get off of almost all of my meds anyways), and increased depression. I didn't notice much of an elavil "fog," but then again I'm usually in a fog most of the time anyways, that's just how I've always been.

As for the computer thing Vicky, I do that all the time. So it may not be from the elavil.

[A.J.]

Now I'm having strange cramping, like PMS cramping, but I've been done with my period for a while now. I'm upset because it's just one thing after another. I usually start getting cramps 2 weeks before my period starts, but it ended about a week and a half ago. I see my new doc again next week for the uterine massage...which I have no idea what it entails!...so I'll tell him about it. Has anyone ever had bad cramping between periods?

[leelee88]

This crampimg feeling your are explaining could be bladder spasms. And this is very common with IC.. Make sure you tell your Dr about this. And I agree about trying the Elavil again, the symptoms do wear off after a couple of days for most people. But also there are other meds that work like Elavil that might not give you any side effects. I am on Tofranil and have never had any side effetcs at all. So you could ask about this medicine.