IC Meds ( Newly diagnosed with IC)

[Arkansas ICer]

Hi Everyone,
I Was Diagnosed With Ic This Past Week By A Urologist After Cystoscope Procedure/ Kidney Ultrasound. I Was Glad To Have A Name To My Pain And Problems. I Am Wondering About All The Meds The Dr. Has Given Me. Do They All Work Well Together? They Are As Follows: Amitripyline, Nitrofurantoin, Hydroxizine, Elmiron, And Lorcet Plus As Needed. Some Of The Side Effects OF ALL THESE MEDS Scare Me. Also, I Was Wondering If Otc Pain Meds Work Or Is A Narcotic The Usual Pain Management For Ic..i Got The Feeling The Doc Didn't Want To Prescribe Much More For Me...although It's The Only Thing That Has Given Me Any Relief Where I Can Function..

Thanks...

[elamar]

If you feel more comfortable with non-narcotics the two that have been precribed to me are Tramadol (generic is ultracet) and one called vicoprofen. They do help reduce the pain, but I'm never pain free. My doctor will not give narcotics, so I don't have many options. Muscle relaxants can be another form of pain relief. I just started valium (2 mg) three times a day to see if it will help relax my pelvic muscles. There are tons of different muscle relaxants out there to try if you and your doctor are willing. Good luck to you.

[IC SARAH-CPP]

Vicoprofen is a narcotic. It is the same medication as vicodin but with ibprofen in it instead of tylenol. That is just weird your doc would say he won't give you narcotics then prescribe you vicoprofen! These docs just don't make sense to me.

I know it is scary when you are first dxed and then you get this laundry list of prescriptions. I would not start all the meds at the same time, if it were me. If you do, then you won't know which ones are helping and which ones are not helping. Elmiron takes a loooonnnnngggg time to work, like 6 months to a year. I would start that one right away. Lortab is for pain so that one would most likely be okay to take now. I would maybe try the amitriptyline right now and see how you do on it for a week, then maybe add in the hydroxizine. Just a warning to you, both of the above meds can be very sedating so just be prepared for that effect.

I too was so happy to have a "name" for my pain. I thought I was totally crazy before that b/c no one was able to tell me what was going on. The first year was very hard trying to get treatment going but once things got under way, I did much better.

sarah

[Briza]

I was going to reply just as Sarah did...start with the Elmiron and try one of each of the other meds at a time, so you will know how each affects or helps you...good or bad. All meds may have side effects unfortunately...and they sound all the more scary on paper! Your dr seems to be on the right track as far as starting you on standard protocol IC meds to try...you can surely talk to your dr about trying one med at a time, in addition to Elmiron, to see how each works..that is not uncommon and how many drs prefer...you may not need ALL of the meds to get you on the road to symptom relief, and there is little way of knowing which one is helping if you start all at the same time. I know the list of Rxs is overwhelming, but that doesn't mean you have to try them all at once. The goal is to find what works for you. Please talk to your doctor about this.
The Amitripyline (aka Elavil) does tend to have a groggy side effect in the beginning...many of us conquer that by starting at the lowest dose (5-10mg) and working up from there to the lowest effective dose. Also taking it earlier in the evening ( I take mine at dinner time) has helped many with the morning groggies, while helping immensely with sleep and the dreaded nocturia and frequency.
Atarax I haven't taken, but I've read that it is very effective for some ICers and taken similar to Elavil...start w/ low dose and earlier in the evening, rather than right b/f bed so you don't have the morning groggies.
A correction on Elamar's post...Tramadol is the generic of the brand name Ultram. Many take it w/ much success for relieving their pain, and yes, drs may be more willing to Rx it b/c it is considered non-narcotic. Ultracet is the brand name for Tramadol+tylenol.
Also, some ICers cannot tolerate ibuprofen (I am one who can w/out problems), but Sarah is correct that vicoprofen is very similar to vicodin/Lortab/Lorcet and is a narcotic/opioid pain reliever...main difference that it contains ibuprofen rather than tylenol as a secondary pain relieving ingredient.
You may very well find that the other meds, other than the Lorcet, relieve your symptoms adequately and you may not be in need of much narcotic pain relievers. If after giving all the other meds a fair chance,as well as the IC diet, and seeing which symptoms they help with, then if you still feel a need for pain treatment and your uro is not willing to provide, you can always ask for a referral to a pain specialist.
Best wishes!
Bri

[leelee88]

Hello and :welcome: You have gotten some really great advice! I just do want to back up what Briza said. I would start outon just one medicine at a time to see if you have a reaction to it. If you take them all together and have a reaction then you will not know which one caused it..

Also you can look here in our patient handbook and get alot more wonderful tips and help like the IC diet. If you have not gotten imformation on it I strongly recommned you try it. Here is the link:

http://www.ic-network.com/handbook/

[Briza]

Also in the ICN Shop (here is the link):
http://www.icnsales.com/
you can purchase the Interstitial Cystitis Survival Guide book by Dr. Moldwin in the Book Category by following that link....you can buy it here, or from reputable online bookstores, which may have used copies for a very low price. It is very comprehensive regarding many things having to do with IC:

IC diet and food triggers
possible causes of IC
meds and other treatments for IC
diagnostic procedures for IC
IC sister conditions (Vulvodynia, Pelvic Floor Dysfunction, etc.)
and more

It is an easy read and very comprehensive...so good to have on hand to refer to very easily, especially in the beginning, without having to search and search for answers you might not even know the question for, and after reading it, then you may possibly have more specific questions regarding one thing or another.
It is also good to have on hand to show to any drs who might not be too familiar with IC and the many treatments available, though it does sound like your uro is on the right track, and trying to cover all bases! :) That's always a good thing to hear when a new member comes to the board:)
Nitrofurantoin is the only med I am not familiar with, but all of the others that you have been prescribed I know are very commonly taken for IC, and yes, for most of us, safely taken together.
I know it seems like more meds than you would have ever thought that you would have to take/want to combine, but those that you listed (except the Nitrofurantoin, but only b/c I'm not familiar w/ it) I know have given great relief to many people with IC whether taken alone or in combination.
Many of us have had to rely on pain meds moreso in the beginning to help us function and have a normal life...that was the way it went with me, but once I got my med treatment plan worked out and figured out which med worked for which symptom, I relied less and less on my Rxd pain meds.
Anyway, welcome to ICN...I really think you and your dr are on the right path...just got to figure out the right combo that works for you~Take care, Bri:)

[Arkansas ICer]

I was trying to respond to all of the great advice, but not sure how this board replying works.

I just wanted to thank you all for your encouraging, wonderful advice.

I am also concerned about the amitryptiline (sp?) causing weight gain. I'm already struggling with my weight and just wondered if it is really worth taking to treat these IC sypmtoms.

[Briza]

Many report that they have weight gain from the med amitryptiline, but I have not and many others have not...it can give many IC patients great relief, so you will have to try it to find out how it affects you. Unfortunately that is the way it goes w/ many IC treatments, there may be one side effect or another, but thankfully some side effects go away w/ time as your body becomes adjusted to the med or treatment. Best wishes...amitryptiline may give you much relief from your symptoms, weight gain or not....if I were you I would try it to see how it goes, because I know that it helped me immensely and also many others. Best wishes!! Bri:)

[SharonA]

:welcome: to the IC Network...

Amitriptyline (Elavil) is my only IC medication (unless you count Prelief). I have taken it for several years. It gave me my life back. Yes, I did gain some extra weight with it, but you don't have to. If you begin taking it knowing that it might do that to you, you can be careful to eat a healthy diet and not over do the sweets and carbs that might cause problems while on this medication. I have been able to take off some of the extra bulk and am still working on that while continuing the med.