Old Diagnosis of IC but NEW treatment

[islandgirl2005]

Hi, i was dx in 1997, but just not am i starting today Elavil 25mg (is this a high dose to start with) Elmiron and Pyridium...What can i expect? I hope i am not drowsy i work at 5am! I have been taking ambien for the past month and that has helped me sleep...but i'm hoping taking the Elavil and Elmiron which is for IC will really help...I also went and picked up Prelief. The biggest challenge for me will be no soda or coffee! but i did order Pero to try....any other suggestions? I pray one day there is a cure for IC. Please respond. thanks...

[Portia17]

HI ISLAND GIRL

How do you work with the pain?

[Dixiefireball]

:hi: and :welcome: to the ICN family. I know you said you wasn't new to I.C but have you tried the I.C diet?? that has been a life saver for many of us you can find that diet and other updated treatment plans at www.ic-network.com/handbook that is a very useful site. I hope you can take the time to check it out.

I'm very proud of you for working with I.C my I.C is chornic plus i have nasty painful hunner uclers on my bladder. I had to stop work shortly after i was dx. with I.C.

My hats off to you hon. Keep up the good spirit.

please keep us updated on how you are we do care.
sending you hugs and prayers
Rhonda

[islandgirl2005]

I dont have a choice I have to work through it. It's been 7 years since they told me about IC, and i just dealt with the pain, but recently I'm only sleeping an hour or two at night. Then to go to work has been rough. The bad part is I still have 30 or so years to work, the good part is hopefully these medications help with the pain/frequency....i just ordered some of the stuff on this website. It's great to have others know what u are going through... how long have you had it?

[islandgirl2005]

believe me i would not work if i didnt have to. my pain is severe and my IC is chronic and unbelievably (u would believe) painful and uncomfortable. What do people do? I can't just quit how would i live :)
I am lucky that I only work 4 days a week but its still difficult to get going especially after 2/3 hours sleep.... some days i could cry!
thanks for responding. have a good day. hope to hear from you soon.

[Dixiefireball]

i was dx june 2001 doctor said i had it for many many years before he found it. He figure i had it the first visit at his office where he did the poss. test a week after i had the hydro/c where they found out then i had hunners. I couldn't take it any longer and apply for my dis. nov 2001 i was approved nov 2003. it was one heck of a fight but i made it.
i'm only 30 years old i was working at the charles lea center. I really miss working :( i hope after i have my hy. May 17. that i will get more relief and be able to go back to work. I hope that just isnt' a dream.

some things that may help you while your working is those stick on heating pads. a non narc. pain reliever then when you get home take a real pain reliever. talk to your doctor about this. hopefully he/she will help you out on this.

Katrina is another lady on this site she has a great thread on pain relief. I'm sorry i don't know the thread off hand but i'm sure she will be by shortly and will post it for you.
sending you hugs and prayers
Rhonda

[Portia17]

i take percocet all day and the diet and the dmso and the rest of the pills. still have pain and very uncomfortable

island girl - bless u - do u have pain and being uncomfortable 24 -7 like me?

Thanks

[kadi]

Hello IslandGirl:)
Elavil has been the medicine that's helped me the most. I went from not sleeping at all (had to void every 5-10min) to the first night on Elavil, able to sleep 4 hours!
After about a week, I was able to sleep through the night, with only 1-2 wakeups. It also reduced my pain significantly.
:bow:

When I first started it, I took it by 8pm to get up at 5:30. It was hard to wake up, so I got up at least an hour before leaving, so I would be clear headed to drive. Eventually this went away & I now take it whenever I go to bed & wake up just fine. I started out at 10mg, later increased it to 20mg. I am super-medication sensitive though, so I usually start at half the normal person's starting dose.

Is your doctor going to have you taking this with Ambien??? Are you weaning off that first & then starting the Elavil? Make sure you check this out with your doctor, okay?

I am single & self supporting, so I totally understand having to work--hang in there, it will get better! Hoping you have lots of success with your new treatments & that you feel better soon!

[VickiB]

Hi islandgirl & welcome to the group!

Many have had good results with Elavil and Elmiron, including myself. The Elmiron usually takes a while to have an effect so give it time. My Uro started me on 25mg Elavil too. The hardest part for me was the grogginess which lingered into the morning hours from it. Then someone told me to take it earlier in the evening, like around 7:00, and that really did help. You might want to try that, as being to work at 5:00am is awful early! -Darn near inhuman!

I used to work out and remember how hard it was on the really bad days. Now I work at home so if I'm feeling lousey I can usually take time off.

I do hope this combination of meds you're taking brings you relief from your pain.

Hugs,
Vicki

[Babs RN]

Aloha and welcome to ICN--I'm Mililani High class of 1989. Everyone has given you great advice and I really don't have much else to add except what a strong woman you are to have endured this illness on the bare bones. Hats off to you!


Much aloha and hugs,
Barb :grouphug: :welcome:

[islandgirl2005]

yes, i'm constantly complaining... i feel like a drag to be around sometimes.... i am debating on starting the Elavil, cause i don't have the option not to go to work right now. so i can't be drowsy there... i just started the Elmiron today do u take that too? its 3 times a day and then i'll take my ambien to help sleep (it actually allows me to sleep 4/5 hours) its wonderful!!!!! but sometimes its too painful and i lie there for hours.... are you on disability?

[islandgirl2005]

no i'm having second thoughts on starting the elavil yet... since having to wake up and be at work around 5:30am, i dont wanna be drowsy at work... so i've just started the elmiron today...and then i'll take the ambien (cause i know it works quick and i can usually get 4 hours sleep) and i wake up alert!! i'll have to start the elavil when i can get some time off or start later......what do u all think???? what should i do?????

[islandgirl2005]

thank you.. yes its been a long road without any kind of tx...
i see u are a military wife, me too....
yes 5am is tough to do, but i'm home by 2:30 which is nice too....
like my other replies i've started the elmiron today and will take my ambien to sleep... i can't take the chance of been sleepy at work... no room for mistakes!!

[kadi]

For me, I was desperate & on the verge of losing my ability to work anyhow, so it was worth it to me to take it at 7:00 or 7:30pm and then get up a little early to shake it off. But, I do understand about waiting to start treatments. I waited 3 months before having the series of DMSO instills once a week, so that I could do it during summer vacation & not miss work or worry that if it made me worse, then what?

The good thing is that you are having some success with the Ambien & you have another option available to you if you want it.

[ICNDonna]

One thing you might do is to ask your doctor about starting the elavil at 5 mg or 10 mg until you find out how well you tolerate it. Sometimes a very low dose will help with pain.

Donna

[Ginny]

I would definetly give Elavil a try. If I did not take Elavil I would never be able to sleep at night. Without sleep I can not work during the day.
25 mg is enough to make you really tired the next day. Try it on the weekend to see how you feel. I agree with Donna about asking the doctor to start you lower. You could just cut the pill in half (it is not timed release).

Also, instead of taking it before bed try to take it earlier. You can take it as early as 6:00pm but you will be tired in the evening.

I am still working full time after 20 years with IC.

[islandgirl2005]

yeah i think i'll start with half that dose... my body does not usually like medication, and low doses are better for me...i can always go up! i've been on the elmiron for 2 days now i've had really bad Headaches, is this normal? could be an onset of the flu too, its going around here... but just thought i'd ask.... thanks so much everyone!!

[ICNDonna]

If Elmiron is giving you a headache, it could be the capsule itself. Many people find that if they open the capsule and dump the contents into water and drink it, they don't have the side effect --- simply discard the empty capsule.

Donna

[Amyinagony]

:welcome:
I just returned back to work full time. (A must for me too!!) After being off on several lengthy disabilities (before being dx'd, and then while receiving 1st treatments until I was under control), I returned to work part time for a while and I've just started full time. So far, not too bad. I take a medication similar to Elavil, called disipramine. I also take an anti-inflammatory called Cataflam (wonderful stuff!!). I HAVE TO take them by 7:00pm, to be able to get enough sleep (with the usually 2 wake up-potty trips) and to wake up early to shake it off before I head out for work. Definitely give the Elavil a try. I agree with Donna...check with your doctor about the dose.
Good luck!!! :) :grouphug: