Male...newly diagnosed, need feedback

[Toby1]

35 yr old male recently diagnosed with IC/CPPS....need some feedback. After multiple family dr visits and three different antibiotics, i was referred to urologist. Urologist had me follow strict diet for two weeks. I Followed completely with no change. On my most recent visit, he started me on 10mg of amitriptyline. A few questions....

1. How long does it usually take for the amitriptyline to start working? Has anyone had any experience with this? If so, did it take care of the pain and urinary urgency or just pain? I'm on my fourth day with no noticeable relief(yes, i'm being impatient)I've also noticed once I started taking meds, I started having mild bladder spasms. Anyone else notice this? I read claritin could help with urgency so I've continued taking that as well. Has anyone had any luck with that?

2. What is the usual time interval to know if a food will cause a flare? Minutes/hours/days? Is a flare up only pain/burning or is urgency part of that as well.

Thanks in advance for any feedback. Before last month, I never even knew of this condition. Now, i'm totally consumed by it. For reference, I have nagging pain from urethra to perineum along with constant urinary urgency.

Thanks again, I feel so blessed to have found this site.

[kadi]

Hi Toby,
Welcome to the ICN!
Amitryptiline can take up to several weeks to work or it can help immediately. 10mg is a really low dose. If you don't get relief with 10mg, some patients gradually increase up to 50-75mg. But the lowest dose is usually started first due to side effects of weight gain & sleepiness.

Usually it takes a month of strictly following the diet without cheating and with careful label reading to avoid accidentally eating acidic preservatives, to find relief. A trigger food can cause a flare from a half hour after eating up to a day later. A food induced flare can be just burning &/or urgency & frequency.

For me, the diet helps, but I need other treatments too. So, since I still had symptoms when I first tried the diet, I thought it didn't work. But the first time I tried a cup of weak decaf black tea, my symptom level shot up so fast, I realized it had been helping after all. Now, though I take other meds, I still follow the diet because the meds don't work if I'm eating trigger foods.

Welcome to the ICN. Feel free to come here with any questions or just to talk.
Wishing you better days soon,

[Toby1]

Thanks Kadi for the feedback. Very helpful, I'll give the meds another week before I call the uro.

Does anyone know if amitriptyline helps with urgency as well as pain? I'm hoping so because the urgency is much worse than the pain, at least mentally.

I've been trying loratadine(claritin) based on Internet readings. I think it may be slightly helping with the urgency but it may just be in my head. Has anyone had any luck with claritin or any other antihistamines? When I asked my uro about the claritin, he said to stop taking it because it can cause urinary retention. However, I believe he thought I was on claritin-d.

As always, I welcome any feedback. It's nice to get information from others who are dealing with this.

Also, I'd love to get some feedback regarding duration. My symptoms started about a month ago for the first time. Is this something that goes away after treatment or is it long-term? I seem to get conflicting viewpoints on this.

[Linda May]

Ic

Everyone is different when it comes to treatment for IC. Some people can stick with the diet and be fine while others need a more indepth treatment.
I started having alot of UTIs before being diagnosed with IC. I went for 3 months of agonizing pain before I found the right urologist to treat my IC.
I had to have DMSO treatments for 6 weeks after that I was pain free for a month. I did a big no no and drank 2 cups of coffee for two days and it set me into a mild flare. A mild flare to me is the feeling of pressure to urinate all the time. I am back on DMSO treatments again, I have tree more to go, for the last couple of days I have noticed improvement. I am hoping and praying that after I receive my final DMSO treatment I will not have another flare, but there is no cure so far. I hope and pray that someday real soon that they find a cure or magic pill that takes all the symtoms away. I wish you the best of luck, and if you need a second opinion go to another urologist.take care

[KarenAnne]

Since Kadi's advice is the best, I will just say welcome & good luck!! I take 20mg. of the ami & it has helped me dramatically. 10 mg. helped a little & 30 mg. was too sedating. 20 is my perfect dose. We are all so different.

[some_guy]

Hi Toby,

Sorry you have this but glad you found this forum right away as it will help you in many ways.

It sounds like you got a pretty quick diagnoses indicating your doctors are on the ball and hopefully that will workout good for you in finding a combination that works well for you quickly.

Again welcome and keep in mind this place is always open.

Mike

[suzannes]

Hi Toby,
I've been on elavil (10-20 mg depending on how I am feeling) for 1 year, it has helped both pain and frequency. I've also been on singulair, zantac and atarax for a year, not so sure this has helped . I've also done Physical Therapy which has helped a lot.

Suzanne

[bob04951]

Hello Toby,

Stick with the diet. It does take a while to get stuff out of your system. You will learn through trial and error. Usually if you eat something "bad" for dinner, you will know by morning for sure.

Hydroxyzine has been a blessing for many. You might want to talk to your doc about that.

And yeah, the pain for guys can be penile (my hub says sometimes that there's a knife in there), or that you are peeing out shards of glass. He has a lot of pain in his penis. What a bummer...so sorry, but glad you found this site, you will get a lot of info and support here. Good luck to you, and hang in there. Jill, wife of Bob

[Toby1]

Update...my urologist upped my amitriptyline to 25mg. Been on it for a week....seems to help a bit but the pain/urgency is still there, but less than before. The urologist seems confident that amitriptyline will work and everything I read seems to say that this drug is a "the" drug for ic. Perhaps the dose needs to be upped again...anyone else gone through the process of getting the right dose of amitriptyline? How high can i go?

[Linda May]

to toby

You might want to ask your uro for more options of treatment. I will have my last dmso and my pain is completely gone now. I just pray that I stay pain free. The uro may put me on a once a month dmso to keep any flares from coming up. I am extremely thankfull that the dmso treatments work for me so far. I hope you find complete relief real soon. Hugs

[KatieB]

Hi Toby

Of course, the dose of ami you take has to be decided between you and your doc. But I've seen people take 75 mg and up. I was started on 25 but had to stop due to side effects that weren't related to my bladder. My symptoms are mostly pain but with some urgency/frequency. It really helped my pain almost immediately but I had to stop before I could find out if it helped with the urgency/frequency. I really wanted to keep taking it. Oh well. I think the issue most people run into when they up their dose is really bad sleepiness. I think that's something your body gets used to, but it takes time. If you want to increase it you should talk with your doc.
Also, ami is one of the first drugs tried for IC. But it is definitely not the only drug. If you look at the first page of the forums and scroll down, there are sections for many other treatments such as elmiron, cystoprotek and many herbal teas and preparations that some people find helpful.
If I drink something that irritates my bladder I usually know about it in a short amount of time. Usually an hour or two. If I eat something wrong, I'll find out about that the next day (usually).
Hopefully the ami and diet is what you need and you'll get your dose right soon.

[sherwood]

physical and behavioural therapy

The benefits of physical and mental therapy can help. Pelvic pain my be muscular and the correct stretching and relaxation is a must. Although the drugs can be helpful now the real healing must come from behavioural changes. Physical therapy, stretching, meditation and mindfulness of everyday living has helped me more than any drug.

As an example of the pelvic pain, the source may not be from the bladder inflammation. From the website pelvicpainhelp.org the following can be found:

"INTERNAL PELVIC FLOOR TRIGGER POINTS
AND WHERE THEY TYPICALLY REFER PAIN AND SENSATION

Pelvic muscle: levator ani

Pain and symptoms typically referred by trigger points in the levator ani muscle:

* TIP OF THE PENIS PAIN (usually found in the anterior portion of the levator ani near to the prostate)
* PAIN AND DISCOMFOR IN THE LOWER ABDOMEN (anterior lower abdominals) and DISCOMFORT IN THE BLADDER
* PROSTATE AND URETHRAL PAIN
* symptoms of FREQUENCY AND URGENCY
* a feeling of GOLF-BALL-IN-THE-RECTUM DISCOMFORT which usually comes from trigger points in the middle and posterior (back) portion of levator ani muscle"

Drugs will help relax or dull the pain but will not cure IC. If you are newly diagnosed IC it can be reversed, however, in my experience it was not the drugs that helped but the changes in lifestyle (stop the type A personality stuff). The books "Heal Pelvic Pain" by Amy Stein, "A Headache in the Pelvis" and "Paradoxical Relaxation" by David Wise has helped me. Also, physical therapy instruction on how to do internal stretching. There is much more to do than drug therapy and waiting for them to work on you.

Sherwood

[123456]

I was up to 75mg of Imipramine for the 1st year of treatment. Has your doc also prescribed Elmiron? That has really been working for me especially after a year of being on it.

[Keen]

Hi Toby

I feel your pain. The most importan thing for me is to stick to the IC diet. Also cut out alcohol out completely. Maybe once u get your IC under control you can add some foods back. I'm on 75.g of elavil. Give it about 3 weeks or so. It takes a while to kick in. I'm also taking flomax and it completely eliminated my frequency and urgency. You will get better. I know it doesn't seem like it now, but it will. STICK TO THE DIET

[Toby1]

Keen,

Thanks for the reply, actually thanks to everyone for their replies. Had to visit with the P.A. today instead of the urologist. Pain/urgency seem to be getting slightly better but not gone. P.A. Wanted to put me on neurontin but I asked if we could give the elavil a bit more time(I was on 10 mg for one week and then 25 mg for the past two weeks) and possibly increase it. So, he upped me to 50mg and then another visit in two weeks. Hopefully, this helps a bit more. Otherwise, I guess I'll be switched to something else. At this point, I definitely feel like a lab rat. But, I guess it takes time to gets the meds lined out. Sticking with a strict diet seems to prevent major flares. However, stress seems to cause issues for me as well. Actually, stress is what caused my initial IC onset in late November. I'm hoping that it goes away just as quick as it came.