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I have been diagnosed with IC for about 4 mnths now, I had a biopsy done this month and they said it was one of the worst cases they had ever seen, they didn't know how I have been going so long up till now, anyway they are going to try the Elm. before going further. My Dr said it would make me lose some hair and stuff I just wonder about the worst side effects that people are having while on it. What is common and and what is rare? Am I going to have to take other meds to be able to take this? I'm really frustrated about it all. I was also told my immune system was low because IC was so bad in me and will have to take rx for that too, does anyone have that problem?
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Mrs. Ridings
I was on...
Loestrin 24(to prevent period induced flares)
Elmiron since Feb.'07 for a year and half
Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
Tried Prevacid didn't work.
Tried Axert for migraines didn't work.
Tried Frova for migraines made worse.
Atarax Feb.'07-Feb'08
Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.
Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!
Find the good in all things and then
anticipate the good so that you may enjoy it.
(KJV)Psalms 37:
3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass. -
It does happen for some, but not most. In studies it was only shown to cause hair loss in about 4% of people taking it.
Probably one of the most common side effects is nausea, but for many of us that goes away after a few days. If it does not go away, some find that it is the capsule itself they are reacting to. Some find that if they empty the contents of the capsule into water and take it that way and the stomach upset goes away.
Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
*****************************
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy -
I had some over all hair thinning (not sure if it was Elmiron related). Not noticeable to anyone but me.
Have been on Elmiron for about 15 months and have only recently been noticing a very small balding patch (about the size of a nickle) on the top-back portion of my head. Not noticable if I pull my hair back or comb it so there is no part.
Also, you should weigh the pros and cons of Elmiron. I was helped so much by it that I don't really care about the slight hair problem.
It's something you should decide for yourself, along with your doctor.
Medical "Issues":
IC
GERD
Tachycardia(resting rate is 125-130
)
Medicastions:
Tramadol-as needed (IC)-50mg
Elmiron 200mg twice a day
Levsin .125mg 1-2 pills 4 times a day
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I hope I don't get nausea, I cannot hardly take Prelief or Pyridium because they make me so sick
. I am going to take Elmiron anyway because I know it will benefit me, but I just hope I don't have to take a bunch of other stuff. I'm already on about 4 or 5 meds not counting prelief when I do take it. I am also going to start another med for the immune thing.
Mrs. Ridings
I was on...
Loestrin 24(to prevent period induced flares)
Elmiron since Feb.'07 for a year and half
Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
Tried Prevacid didn't work.
Tried Axert for migraines didn't work.
Tried Frova for migraines made worse.
Atarax Feb.'07-Feb'08
Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.
Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!
Find the good in all things and then
anticipate the good so that you may enjoy it.
(KJV)Psalms 37:
3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass.Comment
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I'm 20 and have been on Elmiron for almost 4 months and I havent had any hair loss yet. (knock on wood) lol***Rachel***
Dance like no one is watching
Love like you've never been hurt
Live today like it's your last
Dxd with IC in June '06
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Elmiron
I stopped it, not for the hair loss, but for the anticoagulant effects. It is very similar to heparin and I was getting bruises very easily, my gums were bleeding and my periods were getting heavier too, even after an endometrial ablation. Now i use it in my instills.
MariaComment
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I been taking Elmiron since 1997/98 haven't had any side effects even after they doubled my dosage. I take several medicines for other health problems including coumadin, which is a blood thinner.Comment
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Hi,
I have been using Elmiron since December and have not noticed any hair loss. The only side effects I noticed were upset stomach which seemed to go away after a couple of weeks. So far, I have not noticed the Elmiron helping my IC symptoms, but I heard that it can take several months for it to kick in so I am waiting and hoping...Comment
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I've been on it for almost a year w/ no hair loss.Comment
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Thank you everyone, I hope I do not get the upset stomach, or at least that it will go away. I am most afraid to start it because of that. I am going to start in the morning, I read someone's post about if you take the med. out of the capsule it won't make you sick, does anyone know about that? If I do that, do I mix it with water or eat it with applesauce or something?
I am so new to this. I was diagnosed in Nov. 06. I also have a lot of cyst and ovary problems. Ever since I was 12 and first started, I always thought it was supposed to be normal.Mrs. Ridings
I was on...
Loestrin 24(to prevent period induced flares)
Elmiron since Feb.'07 for a year and half
Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
Tried Prevacid didn't work.
Tried Axert for migraines didn't work.
Tried Frova for migraines made worse.
Atarax Feb.'07-Feb'08
Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.
Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!
Find the good in all things and then
anticipate the good so that you may enjoy it.
(KJV)Psalms 37:
3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass.Comment
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I tried taking it 3 different times but had to stop due to the stomach pain and it made me dizzy. If you do get nausea there is a med you can take for it. That seems to help me with that problem. Doctor gave me a suppository and I can't think of it off hand. Taking the capsule apart for me made the symptoms worse. I did have a little bit of hair loss but then I have the alopecia too. You could try using Rogaine if that did happen. Good luck with it. All the information can be Overwhelming. I found it better to take one step at a time.Comment
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Hi,
I have been on elmiron for a little over a year and it has worked really well for me. I was having more hair loss then I would like but then I read somewhere to stop it for 2 weeks and restart it. That worked great, I`m no longer having hair loss. I hope it works well for you too. I don`t remember having any nasea.Comment
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I started it today March 3rd, haven't had any symptoms yet, I hope it will be alright for me. I also have IBS so I take Zelnorm, I don't know yet how they will interact together I am going to start back on my Zelnorm about a week after I've been on the Elmiron.Mrs. Ridings
I was on...
Loestrin 24(to prevent period induced flares)
Elmiron since Feb.'07 for a year and half
Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
Tried Prevacid didn't work.
Tried Axert for migraines didn't work.
Tried Frova for migraines made worse.
Atarax Feb.'07-Feb'08
Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.
Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!
Find the good in all things and then
anticipate the good so that you may enjoy it.
(KJV)Psalms 37:
3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass.Comment
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No hair loss here and I have used it for over a year, maybe more. No nausea either.Meds I take:
Elmiron, Elavil, Vagifem- for IC
Albuterol, Flovent, Atrovent- for Asthma and lung problems
Paxil, Clonazepam- for depression and Anxiety
Atenolol- for rapid heart rate
Nexium- for Gerd
Levothyroxin- for Hypothyroidism
Lasix, Pottasium- for edema
Lipitor- for High Cholesterol
I coated aspirin
02 at bedtimeComment
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HI! I've been on Elmiron for 8 months now with no problems at all. I know some have that barfy feeling but I didn't even have to deal with that. Hopefully you'll be just fine......either way......it's a great med. Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Hypothyroid
Dx'd Chronic Axonal Neuropathy & Myopathy
June 2007
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:Comment
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