Anyone on oral elmiron and elmiron instills at the same time?

[kiffy313]

Hi everyone,
Just wondering if anyone takes elmiron orally and at the same time has elmiron bladder instills? I have just finished 12 weeks of elmiron bladder instills, once a week. I had another cysto with hydrodistension yesterday, and the Dr. told my husband that he wants to continue with the bladder instills and that he also wants me to take the elmiron, 3 100mg capsules every day. I have had no trouble with the instills, but am a little worried about the oral elmiron as I do have bad irritable bowel syndrome and have heard that it can be hard on the tummy. I also have to take lipitor for high cholesterol, and so I do also worry about my liver. I do have my liver enzymes checked for the lipitor, and I know they will do that while I am on the elmiron, but I guess I am just a worrywart... banghead Any thoughts? Thanks to you all for being so supportive.
grouphug
Kandy

[havingsuccess]

I used to do both at the same time. It never caused me any problems but all the cathing made my urethra feel so raw I had to stop. Once I went into remission I stopped it altogether. It did make my symptoms better though. I would talk to the doc about your liver concerns. Good Luck!!

Success

[kiffy313]

havingsuccess,
Thanks for your reply. My urethra is not "liking" all that cathing, either, but I am hopeful that in the long run it will work...My Uro. has me applying Estrace cream topically every night to try and help with the urethral symptoms, so I hope it helps...Thanks again, and Happy New Year!
Kandy

[havingsuccess]

Kandy,

Your so welcome. If you ever wanna talk just pm me!

Success

[Sandy M.]

HI! my name is Sandy.
I am the new girl on the block. I am suffering from IC. Looking for someone to talk to. I have had it for three years. Has anyone been given pain medications by their doctor.Mine refuses to give me anything and tells me to take advil or Aleve. These do not relieve my pain at all. How about you?.
Thank you Sandy.

[Nina 23]

He guys- its Nina . I'm two days on the board. :hi:
I can honestly say it took about 8 months before my body got used to
the oral elmiron. It also gave me diarrhea and made me queezy every morning. Now 9 months later the hair is coming out way too much in combs and if I just put my fingers through my hair the hair just comes right off in strings. Now I am taking 4 I00mg of Elmrion daily. I am supposed to bring it down from now. Although it did wonders for my bladder the side effects were extremely apparent.
Bye for now Nina :angel: :kiss:

[Nina 23]

OOOps Sorry Sandy I forgot to tell you. Hey its Nina again. Sorry My first urogyno gave me nothing for the pain. Diagnosed me with ic and said you don't need a cysto but you are a candidate for the interstim. When I went for my second opinion after a temporary excrutiating interstim, two uro's and a neuro said to me" What, you are not taking anything for the pain." They were appaled .My new uro in nyc Dr Marx gave me ultracet - a godsend. Do not sit and suffer. YOu can take it anytime you want and every 6-8 hours. Of course check your pharmacists if you can take it along with your other med.I take it with antihistamines and elmiron and asthma med. Ultracet that's the way to go . My first uro gave me nothing and I suffered.
Good luck,
Nina:kiss: :pray:

[curlycue]

Hey sandy,
Thats to bad that the Dr wont give you anything for pain. I would seek another Dr that is not right. They dont have to live with the pain on a daily basis.You have a right to fight for your pain.

[Imustpee]

I am on 4 pills a day and did instillations twice weekly for 2 months ..No problems at all..what a HUGE difference tho..I haven't had any treatments for 5 weeks and I can tell I need to go back for more..

[SurferGirl]

elmiron helps me, but i do have just about all of the bad side effects from it too, and i'm scared to find out if i have the "rare" side effects listed (hemmorhage and thrombo______?) you need to find another dr. QUICK to help w/ your pain!




HI! my name is Sandy.
I am the new girl on the block. I am suffering from IC. Looking for someone to talk to. I have had it for three years. Has anyone been given pain medications by their doctor.Mine refuses to give me anything and tells me to take advil or Aleve. These do not relieve my pain at all. How about you?.
Thank you Sandy.

[tulsateacher]

is the estrace cream by prescription only?
does it help with the spasms?
i have a very hard time getting started peeing during the night but the darn pain still wakes me up so i try to go...
just wondered if this cream could help before i go to sleep?

[curlycue]

Hi Ladies,
I went to see dr lowell parsons yesterday and I am going to start on the Elmiron bladder instills 3 times a week. I am not really happy with it but I guess a girls got to do what a girls got to do. I have to drive a 1hour and 30 minutes to see him and that it what sucks,the driving. I just hope its all worth it. I hope everyone is doing good and have a great summer.

[bunnykinb]

I will try the Elmiron instill on 7/14/05. I can't take Elmiron orally, but will try the other route. The 2nd uro's office doesn't have solutions in his office so now I have to pay separately for them. OUCH. My first uro gave me heparin instills and the solutions were at the office, but they didn't help. Now, I have switched uros because I felt the first one wasn't too concerned with all my pain. The 2nd uro said IC is difficult to treat and there will be days with pain. But, I have too many days, weeks, months, and now a year and a half of pain. Why do we have to suffer so much? I will see what this uro will attempt with me a little while longer. Then, I'll have to switch doctors again. I also take Urocit-K 3 times a day along with Atarax once a night. The uro gave me 600 mg of Motrin but that does not help with the burning.

I sure hope the Elmiron instills will help, but I am not very confident.

bunnykinb

[curlycue]

HI Bunnykinb,
Can you tell me what urocit-k is? When I went to see dr parsons he gave me the elmiron instill right there and then it I felt great for about 6 hours, I hope that once I start 3 times a week it will be better, I just hate the hour and a half drive? Well I will be thinking about you on the 14th good luck.

[mela414]

why hot ask the doctor to teach yo how to do it at home so that you don't have to make the drive.
i have an appt this week and the nurse is going to hsow me how to do it to myself. then I'm going to start the bladder instillations with elmiron at home. if i can tolerate the pills orally I'll do that too but I had a problem with them a few years ago.
I also started urocit-K yesterday. I thinmk it irritated my tummy after I took it but am going to try it again today.
do you have any relief with it....bunny? Aslo...how is the atarax working for you?

[curlycue]

Hey Mel,
Let me know how it works out for you. I hope you are able to tolarate it. I am SOOOOO SCARED that I dont dare do it but I asked the nurse today about it and she said that she can train my husband to do it. YEA I hope that he can go through with it.

[bunnykinb]

Ruth & Mel,

Urocit-K is supposed to reduce the acidity in the urine, it is also to help reduce kidney stones. I started taking it 2 times a day beginning April 2005. I was still having lots of burning so when I went in June 2005, I was increased to 3 times a day. I still get the burning which is a pain in the butt or should I say, pain in the pee pee. The 25mg nightly of Atarax doesn't seem to be helping either. I also started taking samples of Detrol LA last week, but I still am peeing every hour during the day. I have also increased my water intake another 2 glasses. But, even before Detrol LA, I still was going every hour. 7/14/05, I will get my first Elmiron instill. But, someone mentioned there was grit left over inside and it hurt for days after. Now, I am worried about that.

bunnykinb

[mela414]

bunny,

I've been wrorried about that too but in light of the way that I have been feeling I really don't have a choice.
I'll let you all know how it goes.

[curlycue]

I will tell you ladies right know, Elmiron instill are way better than DMSO I dont know if you have ever had them but they are painfull? Elmiron is wayyyyyyyyyyyyyy better. Good luck.

[kellyann]

I'm just learning all the treatment options for IC...you can have Elmiron instills and take it orally? Why wouldn't that be one of the firts courses fo action then? I am just starting Elmiron 100mg 4x a day and DMSO..OUCH...but would do anything right now for relief. Is this something I should suggest to my uro? (Elmiron instills) Also, is it easy to do at home? They talked a little about me doing it myself...little hesitant though.
Kelly

[curlycue]

Hi Kelly,
The Elmiron instills are way better cuz it goes directly into your bladder. It works 90% better than Oral Elmiron.

[mela414]

Ruth,

how fast before you feel results form the Elmiron? Do they mix in anything else like lidocaine? I haven't had DMSO in a while. They were horrible!
The uro I am using now doens't like the DMSO. she says it's too agressive. she makes a cocktail for me....there are 5 things in it.
thanks,

[kellyann]

Ruth....can I request this treatment instead of the DMSO? I am still in terrible pain from it (had it yesterday in the am). How often do you do the Elmiron instills? I was told yesterday that if I needed to have immediate relief from a flare that I could have an instillation and that it had several things in it. Including Elmiron, hep, lido, and something else...is that the same thing as an Elmiron instill? Sorry for all the questions :) I'm still learning..Thanks!! Kell

[bunnykinb]

I had six heparin w/lidocaine instillations. They did nothing for me. I don't know if I should have been taking Urocit-K back then while doing the instills or not. But, sometimes it would burn for days, while other times it didn't. It might have been because on certain days I had been in a flare.

I can't do DMSO because of the sulfa; so hopefully, Elmiron instil will help. Two more weeks before that is done at the uro's.

bunnykinb

[kellyann]

I heard that some people had immediate relief and others didn't, so I guess it varies...as does everything else with this disease :) After the DMSO I burned sooooo bad and am still, so I wonder if it's going to be a good course of treatment for me. I will have to ask about the Elmiron next week. Yesterday was the first of 6 scheduled DMSO's...so we'll see. Good luck with yours, let me know how it works. Email me or post...I'm interested in all info on this that I can find. Thanks! Kell

[mela414]

When I had the DMSOs done they burned like crazy! the nurse would put the stuff in and leave it in for 20 minutes then take out the cath and send me home. She told me to hold it in for and hour. I would go home shaking and in such pain! the I wouldneed to lay down for the rest of the day. The relief would start ot came late that night and the next morning. It would give me relief for only a couple of days at the most.
The uro i use now does her own cocktail....she doesn't like the DMSO...she feels it's too aggressive and rips up the bladder wall ...which then allows it to heal. that's how you get the relief. she said in the long tun it's now worth it.
the cocktail that she mixes is: heparin, antibiotic, sodium bicarbonate, marcaine, cortisone. When I first did these with her a few years ago they burned too! I started them again with her about 2 months ago and they cause me no discomfort and actually start to relieve the pain because of the marcaine with in a few hours. Of course when it wears off the pain returns. But the idea is to do a few to get the badder to heal so that you have a longer period of relief. For me, I think the reason that they are not burning me this time around is because I've been on estrogen for about 7 months. I was not on HRT after I had my hysterectomy because of possible endo but that only caused me to atrophy. I think that made me so much more sensitive as all of my tissues were thinner in that area.
Anyway, I'm getting another one of those cocktails tomorrow morning and then going to start Elmiron probably next week. I have to ask her if I can mix in some marcaine.

[curlycue]

Hi ladies,
The first instill of the Elmrion and Lidocaine and something else I cant spell but its a angelstic? I felt greaaaaaaaaaaaaatttttttttttttt I felt like I did not have a bladder I could not belive how fast it worked for me? that lasted about 6 hours of relife the second time I got about the same 6 hours.

I am going in on the 5th of this month and getting another treatment, they are going to teach my husband how to do it? what do you ladies think. I am afraid. Please wish me good luck and I hope he has the patience to do it and not hurt me????

Have a great 4th and be safe out there.

[bunnykinb]

I have someone else on the board who I PM frequently since over a year now. It is great to have someone to discuss my problems with IC and that understands. Anyway, she does at home instills and is now a pro at it. It takes time and there will be times that some days go smoother than others. I hope Ruth has a patient instructor on at home instills.

I lasted 6 days without any pelvic pain, urethral pain but here it is again.

After all the ouchies for the DMSO, I don't even want to bring it up to my uro.

bunnykinb

[mela414]

Has anyone had longer periods of remission ater having more treatments.
I also get about 6 hours of relief after my instills........but then the pain returns and it is upsetting. I'm wondering if the longer you so Elmiron.......the longer you eioll be paind free. Do they take several sessions to do longer term relief. 6 hours is a tease.
I never made it to my appt yesterday as AI got an allergic reaction to a mes and was sick all day. Hopefully they will have time for me next week. This is when being able to do your own instills at home owuld have come in handy!

[curlycue]

Mel,
I know the longer I take Elmiron the better my bladder feels and I dont get as many UTIS and I over all feel better.

[mela414]

glad to know that and happy that you are doing better!

[bunnykinb]

One more week before my Elmiron instill. Oh gosh, I am hoping for some long term relief. My hubby thinks even the urologist may be miss diagnosing me.

bunnykinb

[bunnykinb]

Well, I had my first Elmiron instill. What I didn't know is that the nurse told me I would be getting them once a week for six weeks. I just had heparin once a month. For all those who get their instills at the doctor's office weekly, what do you do when you have your period?

For those allergic to sulfa, but had Elmiron instills, did you get any allergic reaction?

bunnykinb

[curlycue]

They just clean you up and put the meds in?

[bunnykinb]

Thanks for the info. I felt embarrassed to ask, but having 6 weeks of instills does come the period.

Does anyone have sulfa allergies, but were able to do the Elmiron instills?

bunnykinb

[Dianne]

To those of you doing elmiron instills, how often did you do them, when did you get results, and to those that had a lot of improvement, what was your maintenance schedule, like were you willing to decrease how often you do them?

[purpleviolet]

I have similar questions as above. I posted on another Elmiron thread that my URO doesn't seem to know about Elmiron instills. You experts - do the docs tell you that it avoids side effects like on the liver and hair?

[Dianne]

I haven't heard anyone say but I would think there wouldn't be any liver/hair issues because it wouldn't be absorbed systemically.

[bunnykinb]

I was told that the instills don't go through the bloodstream so a person wouldn't have the side effects as the oral med. Yet, after my first instill 7/14/05, my throat felt swollen and it lasted for 9 days. I skipped the next week and felt better. Then, I had my second instill on 7/28/05 and 4 hours later my throat felt swollen again and it lasted 10 days. I skipped the 8/4/05 instill to see if my throat would feel better. I have been ok for 3 days and I am supposed to go in this coming Thursday.

I had a swollen throat feeling in the January 2005 that lasted 2 weeks after being on Elmiron for 2 weeks and continued taking the med even though my throat felt awful. My primary care doctor had me stop it because he said not too much is known on the side effects despite research. I was given Prednisone steriod to reduce swelling. I have had a swollen throat feeling on and off for a couple of days between stopping the Elmiron and beginning the instills. I saw an ENT in case something else is going on and will have a nasal scope to check if anything is wrong with my sinuses that is triggering something in my throat or whether there is something in my throat. I don't look forward to having an optic fiber up my nose, but it beats having a cystoscopy in the urethra while awake in the uro's office.

bunnykinb

[purpleviolet]

bunnykinb,
Sounds like it did get into your system and that you are allergic to it. Sounds scary. Maybe a leaky bladder lining lets things thru? Maybe a blood test would show if it gets into your system. When I did the RTX study (which failed) after the instill they tested my blood to see if it came thru at all. I didn't know if I had RTX or placebo.

[bunnykinb]

The uro did say that the instills can leak through your bloodstream. I asked him this 2 weeks ago. Right now, I am getting the instills every 2 weeks instead of every week.

I had the nasal scope which didn't feel comfortable, on August 10. Everything looked normal. The ENT doctor said I should see a GI doctor because I might be having esophagus spasms.

bunnykinb

[Dianne]

I had a lot of pain again last night soon as I lay down. I hope this heals up soon. I took two Tums the night before and fixed it but I generally can't get away with tums two days in a row. I can't handle the carbonate and last night it healed the esophagus burning pain but my bladder has been horrendous every since. Always something....

[bunnykinb]

I was prescribed Zantac thinking it was heartburn, but it didn't help. I was given 1 mg of prednisone steriod, but that didn't help either and I didn't want to be on steriods. I bought some tums and have taken it when I feel that tightness, but it doesn't help. I already know that the GI doctor will probably order a scope to sholve down my throat. I have been poked in more places than I like to.

[bunnykinb]

Has anyone asked their doctor how long the effectiveness of Elmiron instills last once instills have stopped? I am getting instills every 2 weeks for the next 8 weeks. I never asked my doctor about its effectiveness. I hate to jinks myself, but this has been the best that I have felt since Nov. 2003.


bunnykinb

[mela414]

HI bunny,

glad to hear the instills are making you feel better. Do you still feel that your throat is swollen after the instills? Did you get to the bottom of why that was happening? What was it from?
I am having a cysto/hydro in 3 weeks.....and if I don't get any relief form that we are going to start the elmiron instills. I could never tolerate elmiron orally as it did a terrible number on my gut. I am very sensitive to meds.
Are you on any oral meds besides doing the instills?
Just curious to know what is working for you.
Hope you continue to feel better!
Take care,

[bunnykinb]

Mel,

I have had UTI's in the past, but have always been a major pee pee buddy since I was a kid. I started having a feeling of UTI's that never seemed to go away since Dec.2003 and kept going back to the doctor until finally I asked to see a urologist in Mar. 2004. The urologist diagnosed me with IC in June 2004 but in between Mar. and June I was left in pain. I started with heparin instills monthly from Sept.2004 until Feb.2005 but found no relief. I started Elmiron Dec.2004 but I kept feeling a swollen throat and did have a swollen throat maybe from the Elmiron that I had been on for a month. My primary care doctor said to get off Elmiron because the sulfate in it might be causing the swollenness in my throat since I was allergic to sulfa. But, then after from time to time, I kept having that feeling.

In Mar. 2005 I appealed my insurance to see another urologist who started giving me Urocit K 2 times a day and Atarax 25 mg at night until June 2005, but I kept having urethral burning and pelvic pain so I asked to try Elmiron instills. I get them every 2 weeks for 8 weeks and have increased Urocit K to 3 times a day. This is the BEST I have felt since Dec.2003. I think it is the meds and Elmiron instills that have helped. But, I wonder how long the effectiveness will last? I never asked my uro this. The nurse said if I was feeling better then I would be sent back to the primary care doctor to continue administering the Urocit K and Atarax. However, it is not her call, but the uro's.

Enough of the storybook,
bunnykinb

[bunnykinb]

Oh, the ENT did a nasal scope to check my sinuses and voice box and they were ok. I have an appointment with a GI to see if I am having an esophagus spasm. If things check out there, maybe it is anxiety?

bunnykinb

[bunnykinb]

Anyone reading this?

[monica78]

hey bunnykinb!
I have had the elmiron instills before. I had them once a week for 6 weeks. I was in
a huge remission from my symptoms for a year and a half. I would occasionally have
to take a pyridium if I ate too much of something I should not have ate. My symptoms
came back about a few months ago. I had a cysto with hydrodistention that only lasted two weeks. Now I am having my elmiron instills again. I am on week 3 as of this
Thursday. I also am on elavil and on pyridium plus as needed. The elmiron is the only thing that has really helped me. I have to do the instills because taking it orally gives
me diarrhea or constipation. My hair also was falling out by the handfuls and I actually
was getting missing patches on my scalp. The strangest symptom I had was a tightness in my throat like my throat was too small to swallow my food. But after being off of the oral Elmiron that went away in a few months. I hope yours will soon.
Maybe this helps you. I hope you feel better soon.
Monica78

[cayugaseagull]

I have been taking oral Elmiron for about 9 years now. I need to have blood work every 6 months to check liver function, but no ill side effects yet. I am interested in the elmiron instill though, just heard about them. Any info please send to cayugaseagull@stny.rr.com
Thank you

[DawnsRuby19]

I take the elmiron orally 3 times a day and have just started started back up with the elmiron instillations. Wow!! Everyone seems to have the instills at weird times.. I have my instills 3 days a week for about a month and then go to having 2 a month.. and so on!! I recently just changed uros because my old one wouldnt let me do the instills at home and I got to the point where I couldnt make the 60mile drive so often. expecially after an instillation. My new uro is about 10minutes from my house so it has made things easier on me. The only other instill i have tried is the DMSO.. but I really hated those and they caused me a lot of pain.
Anyway, I too am allergic to sulfa, but I dont have any problems with the elmiron. I just always have a dry mouth.. but that is also a side effect from some of the other medications I take. If you want, you can e-mail me or send me a PM. I hope these treatments keep working for you!

[cayugaseagull]

Is this something that has to be done at the doctor's office or can it be done at home. My husband use to do the combo instills I did years ago.

[bunnykinb]

Monica & everyone,

Thank you for responding and not letting this topic die. Everytime I have my instills, I have to take a benedryl for precautionary purposes. I had my 5th one today. I hadn't asked the urologist yet about how long the instills benefits last. Monica, it is great that yours last so long. I sure hope mine does. The nurse said if I am doing better that the uro will send me back to the primary care doctor for him to give me my prescriptions for atarax and urocit-k. And, if I feel bad again, I will have to ask for another referral. When I talk with the uro in 2 weeks, I will ask him for follow-ups to see how I am doing rather than throwing back into the pile where the primary care doctors don't know how to treat IC. My throat feels a little swollen after hours later from the instill. I have a GI appointment this month to check further into my throat tightness since the ENT scope found nothing.

Feel free to PM me. I welcome your support.

bunnykinb

[monica78]

hey bunnykinb
Please let us know your GI appointment goes!
I wish you will feel better for a really long time!

[bunnykinb]

Monica,

How was your small throat diagnosed? Through an endoscopy? And, how long did you have problems swallowing food or was that with the Elmiron only? I postponed my GI appointment until Oct. 6 because I had too many things going on Sept. 22 and the GI is out the following week. My hubby was just saying that this is the longest I have gone without complaining of pain. It is now 5 weeks, but I certainly do not call it remission. If I ever can be pain free for a year, maybe then.

bunnykinb

[monica78]

HI bunnykinb,
I never saw a GI doc about my throat and it did go away on its own, thank goodness.
It took a few months though. I am now on week four of my instills and I sure can
tell a difference in my bladder right now. I hope it continues to get better.

Monica

[bunnykinb]

Monica,

How long did your doctor initially say the Elmiron instills would be helpful? I go in this Thursday for my 6th Elmiron instill. I will ask the urologist the same question I asked you. My husband is so happy that I have been doing good for almost 2 months now. But, I want to feel good much longer than that.

I noticed though, during my period, I still have the urethra burning. Once I go back on the active pills again, I am good again.

bunnykinb

[monica78]

my doc said if it didn't last a long time that we would have to start the instills again
for another 6 weeks. So far so good, my last instill is next week. I have just quit smoking this week so my bladder does feel better. I am a little stressed out though.
My uro said it will different for everyone, maybe 6 months, a year. It just depends
but if it doesn't help, I will try again. I hope you find long lasting relief.

[cayugaseagull]

My husband contacted Elmiron and they know nothing about elmiron being instilled in the bladder. they only offer the oral pills. Where do you get the instills from?

[monica78]

Hey cayugaseagull,
My doctor gave me a prescription of the oral elmiron capsules. I take those pills with
me to the office and the nurse dissolves them down into a solution, a cocktail that contains
elmiron caps, lidocaine and something starting with a B.
They have really helped me.

[bunnykinb]

Cayugasegull,

The nurse also dissolves the capsule with saline solution only then inserts it through a catheter. I am taking urocit-k 3 times a day and Atarax at night since March 2005, but I wasn't feeling better. Then July 28, 2005, I had my first instill and felt improvement within 2 weeks.

bunnykinb

Monica,

I saw the urologist on Thursday; he said since I am not getting the typical instills every week for 6-8 weeks, and am getting them every 2 weeks, I have to get a total of 16 instills. I have only had 6 so another 10 to go. That will take me through February 2006. Man, that is a long time, but it is better than having burning and pelvic pain all the time. I have cut out the Atarax myself to see if I feel worse. I don't want to be on medications and need to try and cut a cost out.

I see the GI doctor October 6, and if he doesn't see anything wrong with my throat, then it must be the Elmiron or stress causing the throat tightness. I started with the throat tightness 9/21 but didn't have my Elmiron instill until the next day. So, it really might be stress. If it is stress, then maybe I can do the instills weekly.

bunnykinb

[curlycue]

Monica,
Have you ever considerd doing the instills at home yourself, I went through the same thing that you did going back and forth to the drs and it was a pain, after 3 years they finally convinced me to do them at home and they showed my husband how to do it and then I ended up doing it myself. Good Luck

[mela414]

I started doing them at home myself about a month ago. Boy does it make life easier! Once I am set up I usually relax by reading a book. It tkae my mind off of things. Also, I've notice that I do a better job than the nurse as ther is no pain when I put it in! I've learned the exact angle to put it in!
give it some thought...it might be better all around for you and it's not as bad as it sounds!

[bunnykinb]

I am a baby when it comes to pain. I don't know if I could handle doing the instills at home. But, I have heard people using lidocaine to numb the area before inserting the cath.

bunnykinb

[monica78]

Well I work in the same hospital that my uro's office is in. I am an ultrasound tech on the same floor his office is in. So it isn't out of my way to get to it because
I am already there. I have to work to pay the bills even if I don't feel like getting out of bed some days. But here lately I feel alot better. I just had week 6 of my instills
done so maybe this time it will last a long time. I hate having that cath every week.
I quit smoking all most 2 weeks ago. I think that has alot to do with it.

[mela414]

Monica,
I'm gad that you found some relief. I hope it lasts a long time too for you!
What type of instills did you get?

[monica78]

hey i got the elmiron instills. It was an elmiron cocktail. I actually drank a coke
and I still am not hurting. Soda is my #1 trigger. I really am feeling better. I also quit
smoking 2 weeks ago, that could have alot to do with it also.

[bunnykinb]

I had my 7th Elmiron instill Thursday, Oct. 6. I had been doing so much better since I started getting the instills on July 28. About 2 months of almost pain free. I was playing with the kids more. Well, I don't know what happened, but on Sunday, I started getting pelvic pain again. And, yesterday, I started with the burning. I really don't know what triggered it. When I have my next instill next week, I'll have to ask the nurse to check with the uro to see if the number of capsules for the instill should be increased.

Ugh.

bunnykinb

[bunnykinb]

I spoke to the nurse today. She said either my period caused the flare or that I was coming down with an illness. This passed Monday, I spent 2 hours at the doctor's office and was given antibiotics for bronchitis and maybe early stage of pneumonia. The nurse said I should wait to have my instill until next week when I will hopefully be healthier.

For those who do your own instills or have it done at the office, does your office or you do the instills when you are sick?

Oh, my insurance says I have to pay my co-pay for the instills even though I don't see the urologist. I already had 7 and have another 9 to go. Thankfully, the nurse said the doctor will waive the first 7.

bunnykinb

[mela414]

I'm sorry to hear that you are not feeling better. Hang in there..."this too shall pass". I don't do instills when I am sick with anything else. It's just too much for me to do or handle...let alone driving to the drs office. I don't do them at home either because the only energy I have is to lay on the couch and rest!
Please feel better! :)

[bunnykinb]

Has anyone who just does the Elmiron instills (no Elmiron orally) ever experienced hair loss? I don't think my thinning hair on top is really from the instills but wanted to get someone's opinion. I think I was wearing my hair in a ponytail too often.

I did go back to the doctor's yesterday for my little son who has bronchitis too. The doctor rechecked me and now I am taking Advair and prednisone too.


Thanks,
bunnykinb

[pattig89]

Hi Kiffy,
I was wondering with the Elmiron Instills do you have that body odor you have
with the DMSO's ?I am worried about taking the oral Elmiron too....I sometimes have
problems with meds so this is a concern for me....My uro mentioned the Elmiron
instills so that might be the route I will take...I will let you know if I start both
also...I wish everyone luck with there method of treatment I only hope we all
find what is best for us....Thanks for your input....

Patti G.

[rosesitty]

Patty G - I take oral Emiron (for six weeks) and was having Elmiron instills weekly as well. It didn't make any difference, so I switched back to heparin. I usually have trouble with meds, but haven't had any serious side effects with the oral Elmiron. No, there's no body odor with the Elmiron instills - unless you don't bathe! :-)
Stephanie

[pattig89]

Hi Everyone,
I just had an appt. with my uro today..I will be starting the Elmiron instills in a couple
of weeks for 3x a week for 6 weeks...Unfortunately they had no appts. for next week
so I have to wait a little longer than I wanted but hopefully it will be worth the wait.
I to didn't want to take Elmiron orally for the G.I issues bothered me when reading
about them...I so do hope that the instills work....I am nervous about the uretha
burning and some of the side effects from the cath I am hearing...I hope I can
handle it...Though my uro didn't say I could take the Elmiron orally and do the
instills at the same time...Is that something your uro decided on his or her own??
I am still confused by that...I hope that the instills work without having me take
the pill orally....Does anyone know how long these instills will work for after the
6 weeks is up...?? I am curious to know more about them...And if you did have
any side effects from the instills could you tell me about them.....I am to trying
to find that right mix of diet and meds...Good luck to all of you..I will let you know
how it goes...
Thanks
Patti G.
Ic for 2 yrs.
Meds
Allegra 180mg. for allergies.
rhinocourt for allergies
oxytrol patch
premarin cream on occasion (menopausal issues)
prelief for acid food

[pattig89]

Mel,
Let me know how you do with the home instills..I feel the same way going to the
dr.'s 3x a week for 6 weeks is going to be a pain but you do need to do what
you need to do...Good luck with that.
Patti G.

[pattig89]

I just had my 6th DMSO instillation yesterday and had a very long day at work from it.
I had noticed the last few times I had one done the day after I got G.I. issues....
I spent quite a bit of the day in the bathroom....At first I was constipated but than
low and behold I got diarrhea it lasted for quite a few hours...I wanted to know if
anyone else ever had this reaction to the DMSO instillations...If so could you let me
know..I beleive that is my last one I will have especially how I have reacted to them
these past weeks...I will start the Elmiron instills in a couple of weeks...Let me know
if anyone has ever had this symptoms with this..
Thanks
Patti
IC for 2 yrs.
Meds
Allegra 180mg.
rhinocourt for allergies
oxytrol patch
prelief for acid
patanol for allergies

[wife2TJ]

I get 2 instills a week and am on 300 mg's of Elmiron daily.