Diagnosed this week and not sure about amitryptyline and elmiron

[magicmothra]

I was officially diagnosed this week with IC after having a cystoscopy with bladder distention on Friday. However, when I had the potassium sensitivity test a few weeks prior, I was told then that there was a 99.9 percent chance that I had IC. So, at this point I was given a prescription for Amitriptyline, Utira and Elmiron but told not to start the elmiron until after the bladder distention confirmed IC. I have been taking the amitriptyline - 15 mg at night and have noticed that my breasts are completely swollen and hurt. I thought perhaps I could be pregnant and took a pregnancy test and it came back negative. Is this a normal side effect of amitriptyline? I read on the label today that this can occur and if it does, discuss with your doctor. I have a follow up scheduled for this coming Monday to go over my treatment plan (which I have been told will involve weekly instillations). Another problem I face is whether I can actually take the elmiron. I have serious GI problems (divertula and recent severe attack of diverticulitis) and am waiting my GI doctor's approval or disapproval of this medicine. The nurse practicioner at my Uro/Gyn office said it would probably be alright for my lower intestinal track but after reading info about this drug, I am not feeling too good about it. If I end up in the hospital again with a serious diverticulitis attack, my GI and GI Surgeon have told me that surgery will not be an option -- just a requirement. Any info on any of these drugs or treatments that have been successful would be more than helpful.

[NewLife]

I read that instead of taking Elmiron orally it is possible to do instillations with it. I have not personally done it but I don't have any GI issues. I would definitely discuss this with your urologist given your GI condition. I also found based on what I read on the forums that it is Elmiron's capsule that seems to give people GI problems and headaches. I got a bad headache after 3 days of taking Elmiron and taking it w/out its capsule helped with that. It appears that this also helped many people on this forum get rid of nausea. This method was even recommended by the manufacturer when someone from this forum called them with her GI symptoms.

I, too, am feeling very uneasy about the effects of this drug on eyesight and liver function but I weighed risks and benefits and it appears that the drug has a higher probability of helping resolve my condition than inducing these relatively rare side effects, so I decided to take it. But this was not an easy decision by any means!

[sleekgirla]

I would ask if u could just start with instillations and if they don't end up helping if u could then try the elmiron. my uro has me starting the instillations next week and if they don't provide enough relief, I will start the elmiron. I tried elmiron before for a month, did not work but thats not enough time. did not give me any bad stomach problems other than a little heartburn, and I have a sensitive stomach.

[Believing]

That is the exact drug combo that my UroGyn gave me at first. I decided not to fill the script for the Amitriptyline, though (and my doc supported my decision). I had minimal side effects on the Elmiron (a small bit of hair loss) and the Utira-C (a tiny bit of vision blurriness). I think the Elmiron instillations are what helped calm my bladder down. I'm still on the Utira-C today (after a year). I have only had 2 or 3 bad flares since I started the drugs, and for the most part, I live a very normal, relatively pain-free life. I'm in front of a computer or reading all day, and the small bit of blurriness has not affected my work at all.

[ICNDonna]

I think you are wise to be talking with your doctor about your concerns. Are you following an IC diet? That can be extremely important.

Donna

[angie1962]

I was on the amitryptyline for my fibromyalgia for 7yrs...the side effects that I had was alot of weight gain and some heart palpitations

[bluetou]

I have yet to be a CONFIRMED IC patient ....my bladder distention was scheduled for Sept 4, and I bumped it ahead to Oct 3.

I was given elmiron and detrol....both of which SIT on the top of my fridge, I have yet to crack the bottle. I am not going to.

I am pursing a natural approach first, I figure it takes elmiron six months to work...and only works on 30-40 percent of the patients.......I decided to pursue other alternatives. PLUS I DO not like taking meds of any kind, and WILL IF I have to...but first wanted to try other means.

I HAVE BEEN SO PROACTIVE with my health!! no one else has, not my doctor, not my urologist!! they throw perscriptions at me.....and operations...

SO I have been trying other ways and RIGHT NOW I feel they are working.

I am doing the IC diet faithfully. I do not drink anyway....nor do I eat any of the bad trigger foods. The only thing that got me was watermelon, and ctirust fruits. I have faithfully cut them all out of my diet. AND FEEL TONS better!!

I also am on UNDA drops (and am seeing positive changes in my bladder and my frequency!!)

I also met with a physiotherapist who specializes in PFD (vaginitis and ic) and she is doing some treatments with me, and has given me the skill and information to continue to do treatments at home.

I feel that I am in control now. AND I feel very empowered right now.

I have had a few setbacks, due to long drives, and eating a trigger food (watermelon).....I am still journaling and still am not sure how my hormones play havoc in all this......as I have only had two cycles since my dagnoses...and have only completed one round of UNDA drops (one month). I start my second cycle on Wednesday, and am feeling more confident and sure that these are benifiting me.

While at the physio's office yesterday she told me she went to a confernce in toronto and she met a lady there from seatle who has another type of natural approach to IC. I have read the "regime" before somewhere...but not sure where.

I will post it if anyone is interested!??

I woudl consult with your doctor, I would go to a physio therapist, I would go to a natural path I would go to all that you can go to, to get opinions on what you can do that best suits your body and what you are comfortable with.

kind regards, peace :pray:

[sickofmybladder]

You should definately discuss your concerns with your doctor - I have been helped tremendously by the amitryptyline but everyone is different - you have to weigh out your own pros and cons.

Regarding the Elmiron - as somone else mentioned - some people avoid the stomach issues by taking the med out of the capsule - but again I would discuss this further with your uro and gi doctors.

[ak49]

I was just diagnosed about a month ago, but prior to that my Nurse Practioner, who works in an Alternative Health clinic, recommended Prerelief, or there is a product called Alki-Aid, which is a pill form of sodium bicarbonate. It really made the difference in the discomfort. About six weeks ago, I quit Coffee, Black and Green Tea, sodas, chocolate, anything with Citric Acid, including fruit flavored Metamucil, tomatos and all fruit except blueberries and pears. Six weeks ago I was in bed over half the day with pain, wore me out. To sleep I take Ambien, as I've also had severe insomnia for several years. You really need your rest to deal with this. I also use heat and find it relaxing which in turn diminishes the pain.
Diet is crucial and I really don't miss tea, coffee or the rest of the stuff. Choice is those or pain. I've had enough of pain in the last seven months, two hospital stays to manage pain and 5 visits to the ER. Be good to yourself. You may be able to reduce your IC pain dramatically.
Quick question, do these docs who are treating your Diverticultis know about IC and the abdominal pain it can cause? Perhaps you need to print out some information and give it to them.
Good luck.

[april ryan]

Hi,

I will have my IC treated in uk and I noticed a completely different approach here.. I am quite positively surprised that the whole process proposed is completely free from drugs or other substances.

I have been taking anthistaminics for my rhinitis, but also for that I'll try to swap with natural remedies like quercetin.

So next week I have the hydrodistension, and after that a series of instillations of pure hyaluronic acid, which is the same substance of the gag layer. My doc has a long hystory of treatment with that, and he found that 80% of patients are well after 8 instill.. Otherwise he just keeps doing it.

I am aware that in USA this instill is not available yet, but I think it is possible to order it from Canada. Here is called cystistat.

No intention to suggest anything, which obviously should be only a doctor advice, and also in my case there are not other major problems, just i'm very glad with this minimal impact approach.

Good luck
April

[ctzj]

Sure. I would be interested in this other natural 'regime'. Glad things are working out for you. Peace.