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Anyone out there take more than 4 months to notice results?
hi Hello! I was wondering if anyone else out there, took more than 4 months to notice results on Elmiron..such as 6 months? One year? If so please share how long it took you to have some relief from your pain. I need some encouragement, since I've been on it 3 1/2 months w/no relief yet. Thanks!
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Jeannie
"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown
IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies
Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed
Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.
Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden.
I'm under the care of a Pain Management Clinic.
Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!
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My doctor told me 3 - 6 months. At six months I really didn't notice any change, but by 9 months I did. It was so gradual as to be hardly noticeable. I used to get like a shooting pain/urge to pee and just one day realized that I hardly got them any more. And my frequency went from about 12 (I think) to about 8 most days. Hang in there, it's worth it. -
Hang in there. I'm at 2 months and nervous too, but my Dr. said to give it one year!Comment
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Yes, give it some time. It took about 6 months for me too. I would say it took about a year to het to full effect. I have been on it since 1998. Good luck,
Hope
HopeComment
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Thank you!!! kissingJeannie
"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown
IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies
Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed
Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.
Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.
Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!Comment
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I am still hanging in there, I have had 12 once a week elmiron bladder instills, and will see my Uro. on 1-13 to follow up on my last cysto with hydro. He told my husband that he wants to do 12 more weekly instills and also start me on the elmiron orally. I have not started it orally, yet, I have bad ibs and am worried about that, but I know I am going to have to get brave and just do it...So, I guess I am hopeful it will eventually work, my Dr. also has said it can take 6 months or longer...
Good Luck
KandyAlways try to do the right thing; it will astonish some people and gratify the rest- Mark Twain
DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
Elavil and Ditropan-severe bladder retention
Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.Comment
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I have heard others say it even took up to a full 12 months to see a difference. my uro told me to look at staying on it at least a year before giving up on it.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.
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“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 TracyComment
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It took about five or six months before I really started seeing result. Thank goodness the nausea and hair loss stopped long before that. Good luck!Endo, chronic pelvic pain, IBS, IC, LS, FMS, CFS, GERD, possible adenoComment
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I have been on Elmiron since 5/25/03 I remember it well cuz dr said it is going to take any where from 6/12 for you to feel the diffrence and I finally did in October so hang in there?
Bye,
Ruth angelBlessings,
RuthComment
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At least six months maybe more depends on severityComment
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Two of my health care providers, one a uro and one a nurse practitioner specializing in IC in a gynecology practice, told me to stay on it indefinitely. I have been on for 1 year and a month. It is supposed to be an effect that continues to build over time, in other words, don't even think about stopping it, is what they have both told me!
Lowell Parsons, the doctor who helped invent Elmiron, is a big advocate of staying on it indefinitely also.Comment
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All these replies make me feel much better.
I actually had a whole week last week, where I didn't hurt!!! 
It was awesome...I felt great! But guess what today I am hurting again...boo hiss. I was on antibiotics last week for a nasty chest cold. I've seen other ic'ers say antibiotics help some of their pain? It's interesting..whenever I go on antibiotics my pain lets up. I have verified I have no infection etc. so this is very curious to me. Also, I ate a peppermint patty in a moment of sheer weakness last night..(chocolate...bad me!). So, I'm thinking the chocolate was probably the culprit. This is the first time I've tried to eat chocolate since I was diagnosed. Big mistake. Thanks again for all the replies..... kissing
Jeannie
"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." -Unkown
IBS/Endometriosis/Prolasped Uterus/CFS, ME/Fibromyalgia/Refractory IC/Celiac Disease/Autonomic Nervous System Dysfunction (Immune System issues) B12, Vit D deficiencies
Many surgeries over the years, mainly: Total hysterectomy/Gallbladder & Thyroid removed
Treatments: Tried all except Interstim, Botox injections and bladder removal. I've never been in remission.
Daily-Prednisone steroid down to 3mg long-term, Demerol 50mg, Diazepam 2mg
As needed-Home TENS unit, AZO Standard, Marshmallow Root Capsules, D Mannose powder, Prelief. STRICT IC DIET or I'm bed ridden. I'm under the care of a Pain Management Clinic.
Was on SS Disability for IC 2004-2006. Back to work 10 years. Annnnd-My bod gave out. Back on Disability as of Aug 2016. WE NEED A CURE!!Comment
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I took Elmiron for 2 years, I recently have stopped it due to some headaches I need to discuss with my uro on the 27th.. it took about 9 months or better to get results.. nowadays I just not sure anymore.. but I do have the interstim that has helped with the urgency and freguency.
Brat'The will of God will never take you where the Grace of God will not protect you.'Comment
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I have been on Elmiron 300 mg for 6 weeks. My URO said it was going to take a long time everyone responds differently. I'm already feeling better and the side affects
hair loss and gastro problems are subsiding. Meds and the IC diet have forced me to eat healthier and to have patience. Looking forward to more good days...
soooo thankful.
Tilly
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it took me a few months for relief , i am not sure yet if pain will not come back . i started using a heating pad and it really helpedComment
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