Overwhelmed by medication choices

[kristinj]

Hi everyone-

I have posted several times over the last month on these boards and they have been a lifesaver for me. I started having major problems of frequency/urgency about a month ago and could hardly leave the house. After several visits to my urologist I finally found some relief by taking Sanctura, an OAB medication. But I would also occasionally take Pyridium when the frequency or burning got bad. My uro was very hesitant to diagnose IC even when I asked him about it. I had a clear CT scan, a clear pelvic ultrasound, a clear kidney ultrasound, and an in office cystoscopy that showed in his words, "slight inflammation."

Yesterday I sought the second opinion of another urologist who immediately after just listening to my story, told me that I have IC. While I have been expecting this, I am still experiencing such a huge overwhelming feeling right now. The Sanctura is definitely helping me. But I am not completely better. The new doctor wants me to take Elmiron daily and Elavil at night. I hate the idea of so many meds, and want to try things naturally. I am also very scared about all the side effects I have read about with Elmiron. I just started taking Desert Harvest Aloe Vera, and I want to try Cystoprotek. I would like to take things slowly, as I do not have severe pain (and feel lucky about that!) Frequency is my issue. Has anyone out there had success just using the more natural methods? Thoughts about Elmiron or Elavil? I would appreciate any input. I am 33 years old and the idea of being on meds for the rest of my life seems so daunting. Thanks for reading this much. I am so grateful for these boards.

Kristin

[leelee88]

Many people do go with alternatives.. And have found them to be helpful.. But I strongly suggest if this is the route you want to take to please discuss this with your Dr..

[Katrina]

http://www.ic-network.com/forum/showthread.php?t=25908 alternative start thread

I would also suggest sitting on a pillow, physical therapy, and calcium as some alternative beginning things. Things like Tens units or some of the other nerve devices have been what some of friends that chose that natural route have really liked.

I'd say that if you respond to desert harvest aloe vera that should take care of the need for Elmiron.

alterntives like Elavil are some of the more dangerous alternatives that I would want you to be working with a doctor who knows there alternatives before taking. That said...with frequency as your main issue you should be able to find an alternative that is right for you.

Good luck! :grouphug:

[kristinj]

Katrina-
Can you elaborate a little on what you mean about the Elavil? Do you mean it is a dangerous drug? Or that it could have bad effects interacting with natural supplements or other drugs? Or that alternatives to Elavil are dangerous? I definitely plan on talking to my doctor about all of this, but I just wasn't quite sure what you meant by that. I just started taking the Aloe Vera, and I'm hoping it will help. I am also going to try Cystoprotek. I just ordered some. Thanks for responding. And thanks also for listing the link to that thread. I plan to spend some good time reading through that one tonight after I get the kids to bed. Thanks!!
Kristin

[kadi]

Hi Kristin,

Definitely take a little time to read about the different meds for IC, so that you will know the pros & cons of each as you decide.

Honestly, Elavil has been a miracle medication for both me & my mom.
She takes no IC medication except for 10mg of Elavil (a very low dose) & that manages her IC very well. For me, my IC is much more severe than my mom's, but a low dose of Elavil 20mg is my number one medication. I went from voiding 60x a day down to 20 within a month of starting Elavil. It reduced the horrid sensation of needing to void 24/7, and reduced the stabbing pain in my lower abdomen. I went from sleeping only 15-20 minutes at a time (up voiding all night long) to sleeping 4 hours the first night I took it. Within a month, I was able to sleep 7-8 hours with only 1-2 wakeups to go to the bathroom.

It did make me very sleepy when I first started it (doesn't anymore), so I took it at 7:45 at night to go to sleep around 9pm and to wake up at 5:30am.

All medications have side effects, even "natural" ones.

Elmiron can take a long time to work, up to 6-9 months. And its success rate is not as high as Elavil's. But,the big plus to it is that it can be super-effective if it does work for you & I've known patients who have been able to have a much more "normal" diet & lifestyle because of it.

So, when I considered the two medications, I decided to try the Elavil first because I was desperate for sleep and because I would know within a month or two if it would be ok. And then if I was doing well, I'd not need the Elmiron. Or, if it wasn't enough, I could then start the Elmiron without having to wait a long time. And by not starting them at the same time, I'd know if each medicine was making a difference or not (to minimize the number of meds taken), and if I had a reaction, I'd know which one to blame.... But that was just how I decided.

I'd already tried the Prelief (calcium tablets) & diet - those interventions weren't enough, so I was willing to take the more traditional meds. (And I really didn't want to do the instillations at first. I was really hoping oral meds would be enough. The instillations wound up being a major blessing & have saved my career, but that's another story.)

There are lots of paths to remission in IC, we're all different.
Wishing you better days soon,

[Katrina]

Can you elaborate a little on what you mean about the Elavil? Do you mean it is a dangerous drug? Or that it could have bad effects interacting with natural supplements or other drugs? Or that alternatives to Elavil are dangerous? I definitely plan on talking to my doctor about all of this, but I just wasn't quite sure what you meant by that. I just started taking the Aloe Vera, and I'm hoping it will help. I am also going to try Cystoprotek. I just ordered some. Thanks for responding. And thanks also for listing the link to that thread. I plan to spend some good time reading through that one tonight after I get the kids to bed. Thanks!!
Kristin
Actually what I meant was that the alternative herbs that work similar to how the drug Elavil works are higher risk herbs that often react with other meds and should take a doctor involved in taking those herbs. I don't consider Elavil to be any more risky than any other drug in its class.
I hope that has clarified. What I meant was that the herbs that work like antidepressants are usually strong herbs that can do serious things that should be monitored just like drug. Not that they aren't safer than drugs...but in the area of herbs they are ones that are best used with a doctor's help.

Kadi and leelee are both right that even the natural herbs have side effects.

For my own therapy it has taken a lot of meds and alternatives to get me to the point I am now...but I am grateful that I found all of them!

[kristinj]

Thanks for clarifying Katrina! I totally get it.

Kadi- thanks for all the awesome information. I decided to fill my prescription for Elavil 10mg today. I think the Desert Harvest Aloe Vera is making me flare. I posted a question about it in another thread. I am really nervous about Elmiron after reading it's side effects so that is something I have to seriously consider. So grateful to all of you on these boards for your help!!!!

Kristin

[Vesta19]

Why can't the doctors kill the nerves inside the urethra. I don't really give to hoots about have urgency I just want the pain gone. If I have to go 15 times a day so be it, but if I can't feel my urethra burning i wouldn't care.

The should just be able to go inside and kill the nerves to the area, problem solved, we won't know we're in pain if we can't feel it.

[KarenAnne]

Kristen, I just started the generic form of Elavil, amitriptyline, three weeks ago. I have been slowly building up & am now on 30 mg. I started seeing some improvement the first week on just 10mgs. I feel a little sleepy & shakey, but my frequency, urgency, & pain are getting better. I'm hoping as my body adjusts to the new drug that the mild side effects improve. Frequency & urgency are my worst symptoms too, with tolerable pain. I'm able to hold more in my bladder for a longer period of time, & I don't think it's a coincidence. Good luck on the Elavil!!

[kristinj]

Hey KarenAnne- What time of day do you take the Elavil? Thanks so much for your input on this.

[KarenAnne]

I take it around 8pm. (If I'm not driving after that time)

[Briza]

kristin
I also have gotten much relief from frequency and urgency with low dose elavil...many of us find that it is best to take a at dinnertime or like Karen said about 2-3 hrs before going to bed. When I take it a few hrs before going to bed, it doesn't knock me out but when I lie down to sleep I fall asleep faster and tend to stay asleep with max 1 night time trip to bathroom. Also taking it earlier rather than right before bed seems to help us as we adjust to and prevent the morning groggies this med can cause. Hope this helps.

[Tuckersmom]

Why can't the doctors kill the nerves inside the urethra. I don't really give to hoots about have urgency I just want the pain gone. If I have to go 15 times a day so be it, but if I can't feel my urethra burning i wouldn't care.

The should just be able to go inside and kill the nerves to the area, problem solved, we won't know we're in pain if we can't feel it.


I agree. Burning is my worst symptom, and is almost always there to some degree even on my best days. It'd be great to sleep without icepacks.

[kadi]

In the beginning Elavil made me very sleepy about an hour later & a bit hard to get up in the morning. But, that went away in about a month. When I first started, I took it at 7:45 pm to get up at 5:30 am - giving myself at least an hour to shake off the grogginess before driving.

Now that I'm used to it & have no real side effects, I take it between 8-9pm & get up easily at 5:30 or 6am. No morning grogginess anymore.

[kristinj]

I picked up my Elavil prescription yesterday (10 mg) and was really excited to try it last night. I had already told my doctor that I take 20 mg of Prozac every morning for anxiety. He said that taking the Prozac and Elavil together was fine. But when I mentioned it to the pharmacist she looked it all up on the computer and said they can have some interaction. They are different classes of drugs but she said something about how the Prozac can increase the effectiveness of the Elavil or something like that. Anyway, she suggested I talk to my doctor before starting. I know he already said it was okay, but of course it kind of made me nervous, so I didn't take it last night. And of course it's Saturday so I can't get any answers until Monday. Does anyone take Elavil in addition to another anti-depressant? I will of course talk to my doctor about this, but just wondered if anyone else is in the same boat?

[Briza]

I take Prozac 40mg and 10mg Elavil. My dr and pharmacist both said that with such low doses of Elavil that IC patients take that there is little to no risk for interaction.

[kristinj]

THANK YOU BRIZA!!!!!! My doc did say it was fine and the pharmacist said it was probably fine, but it is so great to hear from someone who does the same thing! Once again, I must say, thank GOD for these boards!!
Kristin

[katie87]

I am taking 75 mg of elavil/amit. at night. is there any reason I am on such a high dose compared to some pts. taking 10/20 mg? I mean, is the higher dose supposed to be more effective?

[Briza]

You're welcome!
There are probably hundreds of patients on this board who take both low dose Elavil and an SSRI or SNRI antidepressant.

[Briza]

I am taking 75 mg of elavil/amit. at night. is there any reason I am on such a high dose compared to some pts. taking 10/20 mg? I mean, is the higher dose supposed to be more effective?

It seems most drs start patients on a low dose and titrate up to the lowest effective dose...the lower the dose the lower the side effects, and Elavil is a med that does have a drowsy effect so I for one know that 75 mg would knock me out for days! Anyway, 10 mg works well for me, and with my drs approval I take 20-30mg if my frequency skyrockets.

[Tuckersmom]

My doctor assured me that they could be taken together. I wouldn't hesitate to do it, and I wouldn't put a call in to my doctor.

If you do decide to call him next week, be sure to say that the pharmacist told you not to take them together. That way it doesn't look like you are questioning your doctor's ability to practice medicine.

[Carin]

hi Kristin,

I was recently diagnosed with IC and this forum has answered many of my questions. Glad we found it, right?

Anyway, I take an anit-depressant prescribed by a psychiatrist. When my doctor prescribed it for the IC, I too felt uncomfortable and didn't take it right away.
I checked with the pharmacist and again with my doctor and felt more confident, so I started it.
A week later I went to psych for a med check and asked his opinion and he said it's such a low dose it's fine.
I used it nightly when the IC was bad.

I hope this eases your mind.
But individuals react differently to anti-depressants and your decision about Elavil should be made by you with your doctor's advice. I can only share my exprerience :)

Carin

[SharonA]

katie87...Did your doctor start you at that dose or gradually increase the dosage to that level? I did begin at 10mg and was gradually increased to 50mg and then back down to 25mg.

If you have concerns that the 75mg is too high for you, talk with your doctor about it.

[Rubes]

Hey Kristin -

My story sounds similar to yours. Just to follow up with the desert harvest aloe / alternative therapy part of your post, I just met with a nutritionist (who also happens to have IC), and she gave me a ton of good info. My urologist thinks mine isn't severe enough to put me on Elmiron or Elavil, so I felt like I had to do something else proactive to get the IC under control (usually just during my period). I've got a few supplements I just started (including the aloe) that work in the same way as Elmiron, so if you want to PM me, I will be happy to share with you what I am taking. I don't know if it's helping or not yet - probably will know better in a cople of weeks when I get my period. Keeping my fingers crossed.

Hang in there!

[Briza]

Hey Kristin -

My story sounds similar to yours. Just to follow up with the desert harvest aloe / alternative therapy part of your post, I just met with a nutritionist (who also happens to have IC), and she gave me a ton of good info. My urologist thinks mine isn't severe enough to put me on Elmiron or Elavil, so I felt like I had to do something else proactive to get the IC under control (usually just during my period). I've got a few supplements I just started (including the aloe) that work in the same way as Elmiron, so if you want to PM me, I will be happy to share with you what I am taking. I don't know if it's helping or not yet - probably will know better in a cople of weeks when I get my period. Keeping my fingers crossed.

Hang in there!

I am interested in the supplements you take, so I will send you a pm if you don't mind! Thanks!

[Mimi7]

Hi Kristin,

I have taken 10 mg Elavil at bedtime for almost 20 years for fibromyalgia. Ten years ago, my physician added 20 mg Paxil to be taken in the morning. I was also concerned about any drug interaction, but none occurred.

Hope this helps - Glad you have the sense to research everything that's prescribed for you.

God bless!

Mimi

[TerryW]

Hey Kristin -

My story sounds similar to yours. Just to follow up with the desert harvest aloe / alternative therapy part of your post, I just met with a nutritionist (who also happens to have IC), and she gave me a ton of good info. My urologist thinks mine isn't severe enough to put me on Elmiron or Elavil, so I felt like I had to do something else proactive to get the IC under control (usually just during my period). I've got a few supplements I just started (including the aloe) that work in the same way as Elmiron, so if you want to PM me, I will be happy to share with you what I am taking. I don't know if it's helping or not yet - probably will know better in a cople of weeks when I get my period. Keeping my fingers crossed.

Hang in there!
Hi Rubes,

I am interested in what alternative supplements you take . I've given up on Elmiron. I'm trying Lyrica, but it doesn't seem to do much. I have severe IC, mostly in pain all the time. I need a doctor who will prescribe things too. My uro stinks, only will oxybutynin, which doesn't work for me.

Thanks for any help.

Terry

[kristinj]

Okay, everyone. I have now taken the 10 mg of Elavil for the past two nights. I am not sleeping great. I still have frequency/urgency and I have been taking pyridium. Last night I took the Elavil at 9 p.m. and by 12:30 I was still just staring at my bedroom ceiling. I managed to fall asleep a little after that and slept for about 4 hours or so. Before starting Elavil, I was taking Restoril to sleep at night and it worked great. I am thinking of going back to that, because as all of you know- without sleep everything else is worse. Should I give the Elavil longer to work? Did it help right away for the rest of you? I might also add that I just started my period which could be contributing to some of the problem. Uck. This whole process is so frustrating. Thanks.

[Mimi7]

Hi Kristin,

I always take the Elavil 2-3 hours before bedtime so that it can kick in. It helps me stay asleep most of the time, with the exception of when I'm having a severe flare - then nothing helps.

Hang in there, Mimi

[kristinj]

Thanks, Mimi. Maybe I am taking it too late? I'll try taking it earlier tonight. Anyone else's thoughts on this?

[jen74]

I thought I would add, when ever you are unsure about medication side effects, listen to your pharmacist! Doctors do not know much about medication, they only prescribe them. I was on cipro last year and developed severe pain in my upper arm. I asked my doctor if it was the cipro and she said NO absolutely not. Well, I called my pharmacist and she said that cipro and all that class of drugs has a potnetial to cause tendon issues, and even has caused spontaneous tendon ruptures as well. I also had chest pain after taking macrobid. The ER doc said that this is not a side effect of the drug. I called my pharmacist and she looked up the drug side effects and there it was. It said that actually macrobid can cause lung issues as well as chest pains. I will tell you, I do not even ask my doctor anymore if I have a concern about a drug side effect or interaction. They dont know anything. Always call your pharmacist, they are the guys who know about drugs!!!!! Trust me. Good luck.
Jen

[musiclover]

Hi Kristin. I'm 32 and also recently was diagnosed with IC. I've only had symptoms since, maybe late November I think?? I only have frequency/urgency with a small amount of pelvic discomfort. I had more pelvic pain before, but I'm doing PT, two hot baths a day, etc. and the pain is almost gone. But I have a constant and unrelenting urge to urinate. It drives me up the wall. I'm taking Desert Harvest Aloe Vera and I think it did help a little. The weird thing is that most foods don't affect me, except vinegar and lemon or lime. I did the IC diet very strictly and even bought Fiji water, which is so expensive, but it didn't make a difference, so I'm going back to just using my brita filter on the tap. My doc gave me nortryptiline, which is like Elavil, but I haven't started taking it. I REALLY don't want to. I started cystoprotek, too so I'm going to see if that starts kicking in. I really hope so. I was hoping the PT would take care of this. It made my IBS go away, but not this. It's so frustrating. Let me know if you find any meds that work for you with the frequency thing. I'm going bonkers with this.

Take care.

Lisa

[AthenasMommy]

Hi Kristin,

I also take 40 mg. of Prozac and 10mg of Amitriptyline daily. Additionally, I take 5mg Abilify. My psychiatrist knows about this and is fine with it.

[kristinj]

Thought I would update that I have been taking the Amitriptyline (generic Elavil) for about two weeks now, and I have seen VAST improvement. I have felt almost normal for the past week or so. Most importantly, I am sleeping really well at night! At most, I get up once. (Unless one of my little ones wakes me up- but I don't count that. :)) I never started taking the Elmiron because I have felt so much better already without it. I also started taking Cystoprotek a couple of weeks ago, and that may help too- I'm not sure. All I know is I feel pretty good, and I don't plan on changing anything!
Currently I take:
Sanctura XR 60 mg
Prozac 20 mg
Cystoprotek (2/morning, 2/night)
Loestrin BCP
Amitryptiline 10mg at night

I never thought I would be taking so much medication, but it works, so I will stick with it. I also very much follow the IC diet. I am so thankful to be able to be an active mommy with my three little ones again! Thanks everyone for your help- :)

Kristin

[Rubes]

Hey Kristin -

Thanks for the update. I wanted to check back in because I just got my period and am still miserable, so the supplements I am taking (cystoprotek, NAG, aloe, zinc carnosine, etc) haven't done anything for me yet. My nutritionist says it took her several months to notice an improvement, and I've only been on them for 1 month. In the meantime, I am losing it. The frequency and urgency have always been my main problems. I wasn't flaring when I started the supplements, and I took them for weeks with no problem, so I know they didn't make this time worse, but something sure did. Now I have terrible cramping pain and the burning, which was so bad this time I slept with ice packs. Nothing helped this time, not even prosed.

I was debating whether I should try to ride it out for a few more months or beg my dr. for Elavil to try. I really didn't want to take that, but I want to take that more than doing instillations, which is his suggestion. His office is 40 minutes away, and when you have kids to tote around, it's not easy.

Does anyone else get flares only during their period, but still use meds like this to ward off a bad flare??

I'm so glad the Elavil seems to be working. Keep us posted, ok??

[Goldfinch]

Hi Kristin! I'm so glad you are feeling much better. Sounds like you have a combination of drugs that are right for you. That's excellent!

[kristinj]

Thanks, Goldfinch. I am just glad to be able to say that I am better. A month ago I felt so hopeless. At least I know now that if I flare up again, it WILL get better. Back then I just felt like I was going to be miserable for the rest of my life. I can't thank you and the others on these boards enough. Without this site, I know I would still be miserable and in pain, because it was through the advice of you and others on here that I figured this crazy puzzle out! (for the time being anyway!)

Happy Easter to all-

Rubes, I will send you a pm. So sorry to hear you are miserable.