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10/10/2009 06:11 PM

Toviaz

mimsy317
 
Posts: 108
Member

Hi everyone. My name is Mimsy and I was diagnosed with IC about 4 years ago and years and I mean years of being told that my urges to urinate were stress. I finally found a doctor to dianose me and help treat me. I have been taking Elmiron for many years and now I started taking Toviaz as well. Has anybody tried it? Also, they are trying to get FDA approval to use botox to treat this condition, some states already offer it, mine doesn't, but those of you that have had it, please give me your feedback. I was also diagnosed with Fibro Myalgia a few weeks ago.
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10/11/2009 02:20 AM
blondee8257
blondee8257  
Posts: 1140
Group Leader
I'm an Advocate

Hey and welcome to the ic group! i dont know about the botox, i am kind of a newbie around here,only been diagnosed for a yr now. i have a feeling i have had i for awhile and just did not know it till things got bad. there are quite of few of us here that have fibro as well, when both of those Devil get started it can be a rough ride cant it!!! im very happy to say that for the most part mine stays pretty good, not that much pain just achy bones this time of yr!!! im sure when as it gets colder u will hear me complaining!!! please make ur self at home here and get to know everyone. if u have any questions im usually around here somewhere!!!! really makes a difference to get the right dr doesnt it?

kygirl has been taking the botox and seems to be helping her some. u 2 need to get together!

hugs,

blondee

Post edited by: blondee8257, at: 10/11/2009 02:21 AM

Post edited by: blondee8257, at: 10/11/2009 05:07 AM


10/11/2009 06:37 AM
AutumnSunset
AutumnSunset  
Posts: 1262
Senior Member

Hello Mimsy!! Glad that you found our group!! I've had Fibromyalgia since at least 1995 (according to my rheumatologist), but was only diagnosed with IC in August 09. My MAJOR IC flare started in May 09, and continued all summer!! I'm taking bladder treatments of heparin and steroid about every 2-3 weeks now, and the bladder pain is much better. I'm on a new drug for fibro pain, and that is helping tremendously also. At the moment things are looking up, after an entire summer of horrible pain!

I tried Elmiron for about 2 weeks, but it causes hair loss, and I'm already on another drug that causes hair loss, too. During that 2 week period, I started noticing more hair loss, so talked with Nurse Practitioner, and she recommended that I stop Elmiron. I haven't heard of Toviaz.


10/11/2009 11:52 AM
TaraT
TaraT  
Posts: 4164
VIP Member

HELLO AND WELCOME!!

10/12/2009 06:17 AM
mimsy317
 
Posts: 108
Member

I have been on Elmiron for my IC for about 3 years and it has helped me a lot. But, I did notice that hair is falling out but I thought it was because I was using my flat iron too much. I don't get pain with the IC but I have sudden urges and nothing comes out. Someone said that they are on a new drug for FM. What is it? Also, does anyone at there have pain in your private area when trying to have relations? I am trying to fraze that question appropriately.

10/12/2009 08:03 AM
AutumnSunset
AutumnSunset  
Posts: 1262
Senior Member

Mimsy, I am on 2 new drugs for fibro. I started Savella in May; it has a lot of side effects - including hair loss (like Elmiron). I got up to the recommended dose of 50mg twice daily, but ended up decreasing it to 25mg twice daily. At the lower dose I seem to get about the same results as at the higher dose, but with fewer side effects. It definitely dropped my pain level from about a 7-8 to about 4-5, but I still have major constipation issues and excessive sweating (horribly embarrassing!!).

The latest drug that I'm taking for fibro pain is Suboxone. It is the wonder drug for me so far!!!! It is being prescribed for several fibro patients at a very low dose, and for some odd reason is working extremely well!! It was originally approved for drug rehab at higher doses; they don't have a clue why it works so well for fibro pain at the lower dose, but it does!! Most doctors have never heard of it, or if they have they are only familiar with it in association with drug rehab therapy!! If you are interested in learning more about it, go to "Suboxone or what I Call SuboxWOW" in MDJunction Fibromyalgia area: http://www.mdjunction.com/forums/fibromyalgia-discussions/ medicine-treatments/811574-suboxone-or-what-i-call-suboxwow

Within an hour of taking it, my fibro pain was GONE!!! Yes, I know it sounds too good to be true - but it happened to me, and I still have trouble believing it. Even with all the rain/storms coming through, my fibro pain still has not gotten above 2 - it is usually at 8 in this type weather!! Unfortunately I don't think it helps my IC pain a lot, certainly not nearly as well as my fibro pain. Now that would have indeed been wonderful!!!

As to your other question, personally I haven't had that problem so far, but I was given literature from the doctor's office about IC and intimacy, so I know that other people do have pain during relations. Maybe someone else can help with that question. I did find these links that might be helpful:

http://www.ichelp.org/PatientInformation/LivingwithIC/ Intimacy/tabid/249/Default.aspx

http://www.ic-network.com/guestlectures/ cjaynetranscriptfinalrev.pdf

Hope you have a good day. We are supposed to have rain most of the week here. I use to really dread that, but with Suboxone, it is not too bad!!

I just saw an ad for Toviaz in November's Good Housekeeping magazine. That is the first time that I have ever noticed the drug being advertised. Does it seem to be helping you?

Post edited by: AutumnSunset, at: 10/12/2009 08:05 AM

Post edited by: AutumnSunset, at: 10/12/2009 08:11 AM


10/12/2009 08:32 AM
blondee8257
blondee8257  
Posts: 1140
Group Leader
I'm an Advocate

yes i also have pain w/relations. it is one of the problems that goes along with ic.

http://www.ehow.com/how_2136182_painful-sex-as-ic- patient.html

u might want to talk to ur dr, he may have some suggestions also.


10/12/2009 11:40 AM
nkier

Yes. I started having pelvic pain 1 yr 9 mos ago. The discomfort with relations was just the pressure on my bladder. Now I have pain internally and just recently external pain started throughout the entire area. I guess the external pain can indicate Vulvodynia. This entire IC disease if rough. Its a rollercoaster every day with pain, frequency, urgency, pelvic floor spasms, nerve radicular pain all starting and stopping when they want. I am going to physical therapy which my help the intercourse pain since all the muscles around this area are spasming and are painful. I wich you well. --Nickie Sad

10/12/2009 11:46 AM
nkier

How long have you had IC? When the pain started after having years of frequency and urgency, I only had some discomfort with intercourse. Now I have actual pain. I asked my husband why he put sand paper around his ____. I tried relations a few days ago and had pain on the outside too. I even used lubrication on the outside just in case. I think this indicates I probably have Vulvodynia too. --Nickie

10/12/2009 02:39 PM
blondee8257
blondee8257  
Posts: 1140
Group Leader
I'm an Advocate

im kinda new, just been diagnosed for yr now but mine started out as discomfort then steadily got worse over time. i had a cystocele and had a pretty rough time during my hysto(4 yrs ago)-i just thought the discomfort was from all the problems!!! i just recently had support surgery for bladder and he did give me a steriod cream to use 3 times a wk, which has helped w/dryness. i really dont know but it is possible u have vulvodynia...need to talk to ur dr about it and ask him for suggestions. it never ends w/ic does it?

hugs,

blondee

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