Stopped Elmiron TEMPORARILY

[massagedoula]

I am very dissappointed and upset about this, but I have stopped Elmiron for a little bit. That headache that I talked about in earlier posts was just getting worse and worse and after I had had it for 5 days, I called my "wonderful"-NOT! Doctor and Nurse Practicioner at the University hosptital to ask what I should do. I called 3 times. No-one ever called me back. I am sick of that, it happens all the time. I am going to have to find a new uro. I am going to order the list from the ICA. (The ICN list only lists one uro and I don't want to go back to him...been there done that.....)

So I am left alone to try to figure this all out. I called Ortho-McNeil and spoke to someone about it and she knew less than me. She just documented that I was having that side effect and that was it. I asked about if I opened the capsule would that help, and if the medicine would still get absorbed. She checked and said that Ortho does not recommend taking the medicine in any other way than in the capsules. So now I don't know what to do....

I stopped the Elmiron at 3pm yesterday, and will stay off of it all day today too, maybe another day as well. My head already feels better but my bladder feels worse. That pill was REALLY helping me, even after just 1 month. I could really tell the difference. I have to find a way to be able to take it. I know it is my miracle drug. I am so dissapointed. Yes, I have other side effects, I am also losing hair, but I can deal with that totally if it helps my bladder. However the headache I cannot deal with.

I wish I did not have to go at this alone, but my doctors will not call me back about this and I am sick and tired of them doing that. So I really need advice and support here.
Thank you!

[tigger_gal]

I too had to stop Elmiron because of severe headaches.. and blury vision. here is a link in the hand book about Elmiron http://www.ic-network.com/handbook/oral.html

What are the possible side effects of pentosan polysulfate sodium?
• If you experience any of the following serious side effects, stop taking pentosan polysulfate sodium, and seek emergency medical attention or contact your doctor immediately:
· an allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives); or
· any prolonged or unexplained bleeding (e.g., nosebleeds, coughing up blood, blood in urine or stool).
• Other less serious side effects may be more likely to occur. Continue to take pentosan polysulfate sodium and notify your doctor if you experience
· increased bruising (contact doctor if severe);
· diarrhea or upset stomach;
· hair loss; or
· headache.
• Side effects other than those listed here may also occur. Talk to your doctor about any side effect that seems unusual or that is especially bothersome.

[KeeKee]

I would call a pharmacist and talk with him/her about Elmiron. I've found that sometimes my pharmacist knows more about a medication than my doctor! Ask them about opening the capsule....I know I've read many posts here on the message boards where people can't tolerate the Elmiron capsule, but they do just fine when they take it out of the capsule and dissolve it in water. Also, could you try lowering the dosage instead of completely going off it? That way, you'd still have some left in your system that would hopefully help your bladder and not cause a headache.

[massagedoula]

KeeKee,
I tried lowering the dosage this week. I only took 2 some days, and one another day, and I still had the headache, just not so bad.

I will try to call the pharmacist now. Very good idea!

[Babs RN]

ICK--headaches are horrible thing to put up with. To top it off your bladder was doing so well. Talk about a serious emotional roller coaster and just wanting to get off, right? :kissing: I hope they are able to put together a plan that you are confident, feeling like you're moving forward and feeling like your self again.(Yike, my English teacher would kill me in high school for a run on sentence like that)

Hugs,
Barb :grouphug:

[ICLori]

I'm so sorry. I'm disappointed for you because you were one of the rare people Elmiron works for!

Everyone has given you so many great ideas, and hopefully you'll find a doctor soon who will give you the best guidance.

One thing that I might ask a doctor would be if we could combine a couple of treatments, such as Elmiron and Elavil - it seems to me I read once that Elavil works on headaches as well as IC pain, if the medication is tolerated that is (I myself couldn't take it.) I'm thinking that way you might be able to get the bladder relief from the Elmiron and have the headaches prevented by the Elavil (and the Elavil might mop up any residual bladder pain you got left....)

Blessings, Lori

[emilyrose197377]

Emily , I agree call your pharmacist sometimes they know more than dr.'s. I was having all that trouble when I took elmiron my pharmacist told me I could empty the inside of the capsule in water . you might want to call your pharmacist and ask him if it will help your headache if you did that .

[ICNDonna]

The drug company cannot legally suggest that you take an FDA approved medication in any manner other than that which was initially approved by the FDA. I'm not surprised that the company was not able to give you this information.

There are, however, at least several people who post regularly here who have taken it successfully without the capsule when they couldn't tolerate the capsule itself. Hopefully you'll hear from some of them.

Donna

[massagedoula]

I went to the pharmacy and the pharmacist told me that I could put the contents of the Elmiron in a plain gelcap, but that I should not empty it into water, as I would not absorb the medication as effectively. So I went out and got gelcaps and vegicaps (made out of vegetarian source gel) and will give both a try. I have no headache right now whatsoever, so I will re-start the Elmiron tomorrow (in the original capsule) if that does not work and the headache comes back, then I will put it in the gelcaps and vegicaps and try it that way. I already experimented with putting it in the gelcaps and it is really hard---some powder always escapes and goes on the floor or my hand, but I get most of it inside the cap.

I am starting to get a huge flare today. It was my fault because I knew that I would be extra sensitive today because of not taking the Elmiron for the last 24 hours plus, and I was at the bar with my friends for lunch. I ordered french fries because they were the only thing that I thought would be safe. But when they came they had all sorts of spices on them...and I think that one was cayenne or paprika. I ate them anyway because I was so hungry and now my bladder hurts so badly...I almost forgot what it was like to flare like this since I have not done so in the last 2-3 weeks (during the while I was on Elmiron).

I am restarting it in the normal capsule tomorrow. Pray and wish me luck because I really want it to work, and the headache have not been from the medicine.

PS, I have to work this out for myself, as my doctors have proven useless yet again. I called 3 times and never heard back from either of them. This is what always happens. My next appt. is not until December, so I am on my own. I am going to try to find another doctor, but I have been through 5 so far in the 2-3 hour radius around me, and these ones (at the university of washington) were supposed to be the very best in the area. I think that WA sucks for urologists and I am going to have to figure this out on my own.

PPS, Lori, for many reasons, I have always refused to try Elavil. It is one of the only meds that I don't ever want to take. And I know that Elmiron works for me, however, if my body does persisitantly get a headache, then I will know that I am allergic to it and it is making my body toxic and will be forced to stop. I don't want to take another drug to cover up the headache, because the headache is there for a reason. I only pray that it is not the case.

[Romans8:28]

massagedoula
I am sorry your going through this alone! I know it is disappointing! I sure hope you can find a different doctor!!!! :grouphug:
I have found that I can tolerate Macrobid better when I put it in the gel caps so, hopefully you will be able to also!

[marsi4]

Hi Massagedoula!

I don't think that the capsules would be causing the headache but instead the medication itself might be. If you find that it was helping your bladder I would continue taking it and would take something for my headache pain. Afterall, I know you don't want to try any invasive treatments so there aren't too many options as far as oral medication goes. I find Elavil causes my head to hurt at times and doesn't help me with pain. I know how hard it is to find a good urologist who knows something about ic and wwill take the time to listen and help. I have been very dissapointed with 2 uro's I've seen so far. Moreover, if you do happen to find another one the wait is usually quite long. Unfortunately we're all in the same boat struggling with this disease and desperately seeking help and relief which is so difficult to find. I,m so discouraged and frustrated with ignorant doctors who lack compassion and understanding of this illness. They always downplay the severity of this disease and don't give us the time of day to ask us questions so they can become more educated and aware of how disabling this illness is. It seems to me that all they care about is seeing the most patients they can in one day and make more money. I am also losing a lot of hair which doesn't bother me anymore because I spend most of my time at home duje to intense pain. If Elmiron could work for me the hairloss would me minor. Hair tends to grow back. I'm sorry to hear that something was finally helping and it seems to be bothering you. I'm sure there are other uro's in your area but it's so hard finding a good and caring doctor who puts a patient's suffering and needs before money. Hope you can continue the Elmiron and the side effects will subside.


Marsi4

[massagedoula]

Marsi,
The reason that I thought the caps MIGHT be causing the headache is that I looked up the ingredients and there is yellow #5, red # something, and one other color. I have always been really sensitive to artificial colors, they have made me get headaches in the past if they were in foods. So...I know it is a long shot but I am hoping that is it. I am going to re-try the normal Elmiron in its normal capsule tomorrow....Wish me luck! If that sets off a headache, I will stop until it goes away then try the clear gelcap with the drug inside.

I can't just live with a headache for the rest of my life either, no matter how good it works for my bladder, so we just have to find some middle ground here.

Cross your fingers with luck that I can restart it successfully tomorrow....

[Peta B]

Hi Massagedoula

I read a guest-lecture on this site, about elmrion from Dr Parsons (http://www.ic-network.com/guestlectures/parsonstranscript.html it was posted from 2001). I've copied the bit about side effects like headaches here:

<icnmgrjill> What about patients who either have side effects or can't take Elmiron because they are on blood thinning meds?

<drparsons> GI Problems - 90 to 95% of people won't have any problems taking Elmiron but about 5% will have problems.. mostly GI. The most common complaint I get is epigastric distress, acid indigestion. At least half will get improvement if they take the Elmiron out of the capsule and mix the contents with an ounce of water and drink it. Another trick is to take it with a small snack if though we encourage you to take it on an empty stomach. It will still be effective if you take it with a small snack.

Headaches - Another side effect is occasional headache that, again, seems to be related to the capsule. Taking the drug as described above... seems to help. If it's an allergic type headache, hydroxyzine can significantly help.

So this doctor seems to think it's the capsule like you do. He is suggesting to mix it with water (sorry if i'm giving you too much conflicting advice here), so if you don't find the gel caps or the vegi caps working perhaps you could try the mixing thing. It would be a great shame if you stopped taking something that was working for you!

Sorry about the fries incident as well - it's so annoying to end up with a plate of food that you can't eat, when you're out socialising (and hungry). Perhaps we should start the first IC bar that serves plain boiled potatoes instead mmmmm!

Hope you find a solution that helps you soon. :grouphug:

[tigger_gal]

I hope that you figure something out.. headsches are horrible..

[vm]

Aw, man... I'm sorry you are having this side effect. :(

I wonder, too, that if putting the med into a different capsule doesn't help ---- maybe you could try going off of it for 2 weeks and then trying again??? I know some people say that helped with the hair loss side effect. Worth a try, anyway.

[ICLori]

Keeping my fingers crossed for you that it's the capsule and that you get much better results from taking it another way.

Blessings, Lori
P.S. Some health food stores sell a device where you can basically make your own herbal pills....it hold the capsules and fills them precisely...wonder if such a device would help you?

[icsonja]

HI massagedoula (gee I wonder what you do for a living...lol). I also had bad side effects from elmiron and taking out of the capsule didnt work for me, but I do use it as an instillation, it makes sense as my wondernurse said, why not put the medication right where it needs to be. This way I can use it, no headache and the lidocaine that I mix with it blessedly numbs my bladder for a little bit.Just one more idea in the mix for you to think about.
Keep with it, you are one of the lucky few who elmiron helps, I am sure you will get a way to use it. I am thinking positive thoughts for you!!
Sonja

[massagedoula]

Hi everyone,
I wanted to let you all know that I have not restarted on the Elmiron yet. The reason is that today is the day with the least pain that I have felt since I got IC! I don't know why this is...but I kept feeling like I did not want to start the Elmiron again whne something this strange has happened. I still have symptoms of course, and can still feel my bladder always, but it is not incapacitating to me, it feels dulled.

So I will go with the gift of feeling better that I have been given today, and will hold off and restart tomorrow. I think that it is good anyway to give one more day of a break to my body before restarting the medication.

I will let you know what happens, and also let you know if I EVER hear back from my doctor. (Who never called me back.)

[massagedoula]

PS,
Since I have the great side effect of hair loss too, maybe this break will help that as well, though it is not as important to me as the headache one.

[TabbiH]

What do your pills look like? Mine are either white or clear (hard to tell with white powder in them) with black print. It would be very strange for there to be color in them. Maybe some look different than others, perhaps based on dosage? I used to get stress headaches all the time before I had IC, so headaches are just part of life for me. It's hard to tell what causes them these days.


Marsi,
The reason that I thought the caps MIGHT be causing the headache is that I looked up the ingredients and there is yellow #5, red # something, and one other color. I have always been really sensitive to artificial colors, they have made me get headaches in the past if they were in foods. So...I know it is a long shot but I am hoping that is it. I am going to re-try the normal Elmiron in its normal capsule tomorrow....Wish me luck! If that sets off a headache, I will stop until it goes away then try the clear gelcap with the drug inside.

I can't just live with a headache for the rest of my life either, no matter how good it works for my bladder, so we just have to find some middle ground here.

Cross your fingers with luck that I can restart it successfully tomorrow....

[massagedoula]

All Elmiron is the same. However, in order to get that nice white pill with black writing, 3 artificial colors are used. Don't ask me why...I got the capsule ingredients straight from the drug company itself....

[massagedoula]

I just decided to start it again. After thinking about my last post, It occured to me that this the best time to start it, when I am feelin' good!...so I just took one...wishing myself luck luck luck luck luck fingers crossed 4-leafed clovers, etc.......

[Romans8:28]

:)
So thankful your having a good day and may it be the beginning of a many better days!

[SandyRN]

Hi sweetie,

I'm SO sorry that you're having that awful headache. I wanted to tell you that you might want to consider trying the heparin instills. I have noticed a difference after 2, just did my 3rd one today. I know that I have read in several places that the heparin is a substitute for Elmiron for those that can't take it.

I am having a hard time with my instills right now (see my post "OWWWWWW" in the instills section, BUT, once the pain from doing the cath stops, the relief is absolutely wonderful.

I am supposed to do these every day so that the heparin can help my poor bladder and hopefully give me some long term relief. I'm very optomistic that once I get my cath situation straightened out I will have no more problems with this......and that it will help me as much as the Elmiron would have if I could have continued it orally.

I know that you're taking things slow, baby steps, but it's something you might want to consider. I've had no other side effects from these instill other than the urethral burning, which is caused by massive, man size caths, and the lack of the lidocaine jelly....once I get that I'll be fine.

I hope you feel better soon. I really feel for you as I've been there with the Elmiron, but had the severe stomach upset---not the headaches.

Hugs, Sandy

[pj77]

After taking the Elmiron without any symptoms for the first week- two weeks I developed a headache too. It lasted for 2 solid weeks. I stayed with it though. I take 2 pills twice a day. After I couldn't get rid of the headache. I stared only taking 1 pill in the morning and 2 later on. I did this for like a week, week and a half, A few days I tried 3 pills spread out. My headaches DID GO AWAY. I'm back to taking two pills twice a day now. I don't know why it worked to take a little less , but it did. Maybe my body needed to adjust a little. If you think about it- just starting 4 pills a day all at once is a lot for your body to adjust to. I should have started slow and took like 1 pill for 3days, 2 pills for 3 days etc etc. So far I'm doing ok now- we will see- I hope the headaches don't come back. I also take the first pills a little later in the day now -so my head wakes up a little before I take them.

Hope this info helps-GOOD LUCK!

[massagedoula]

pj, That is very inspiring news that your headache went away. How long has it been gone? how long have you been taking the Elmiron? I thought about that today, to try to only take 2 pills a day and one in the late AM and one in the early PM so my body is not groggy when it digests them....

Sandy,
What do you think about Elmiron instills? Do you think that the Heparin is better?
I just want to try the oral meds first because I do verrrry bad with catheters (but with lidocaine I bet it would be tolerable) and also worry about UTIs. Plus (big one) since I am going to school to be a midwife, doing instills while on call or at births would be a bit of a nightmare. The oral meds are so much easier....but I do also think that Elmiron instilled right into the bladder makes more sense than it going through the whole body. I will ask about instills at my next appt. It is the first week in December, I posponed it so I can have some time to play around with the Elmiron pills, taking it out of the capsules, drinking it in water, taking less of them a day....etc......

But I will ask about instills if this does not work, because I can't take Atarax, won't take Elavil, so if I also can't take Elmiron there are not really any oral meds left!

But as I said before, the Elmiron is really helping me...so I hope that I can take it. I have a little headache now but nothing much, so I don't know if it is from the Elmiron or just because I am thinking about it so much! It is nothing like the incapacitating headache that I had last week!

[SandyRN]

Well, I was told that you can get the same side effects from the instills as you can the oral form. Someone else might be able to answer that better than I can. I do believe though, that Dr. Evans has me doing the heparin because I told him about the side efffects of the hair loss and stomach paiiiiiiiiin, and he said he'd prefer not to do those instills.

I've done a search on the web...googled heparin instills + IC and found a lot of very hopeful, useful information. Also, on askjeeves.com, I found some other articles regarding it.

It's not that bad to do the instills, it really isnt. Right now it's a pain, and difficult, but I can see that it's going to get easier, and like I said, with the lidocaine jelly and smaller caths, I'm going to have it made.

You can do them in the morning, or evening, whatever is best for you and hopefully they will last all day long for you...they are giving me 36-48 hours or so relief. I hope it continues that way.

You can do these! If you're gonna be birthin babies sweetie, you can cath yourself :)

[massagedoula]

Sandy,
When you get relief, is it total or partial? Just curious!

I will ask about them at my next appt. but until then I will try to work with the pills....But instills will be my first question when I see them again (unless the headaches go away, of course!)

Thanks!

[massagedoula]

Sandy,
I just noticed that you take 25mg of hydroxyzine 3x a day! How do you do that?! I took one 10mg once a day and I got a blood pressure of 85/55 and fell asleep at the table in the middle of dinner!!!!

[SandyRN]

Once my bladder irritation, and the urethral pain goes away it's GONE, and I mean all the way. I have had some bladder spasms, and I've always had them very severely, but I'm telling you, this is the best thing that has happened to me since I've been dx'd with IC. I'm crying now as I write this. I never thought I would have this kind of relief ever again. Nothing is 100%, but there are times I do NOT know my bladder is there until I have the urge to pee. It's mind boggling to me!!!! It's truly a Godsend.

Have you looked at the meds I take? LOL I am like a horse when it comes to meds, it takes a LOT to knock me out. Dr. Evans just RX'd the 3 x a day at my appt last Monday, and I have to say it helps with anxiety, and it seems to be helping my allergies as well.

I just have a high tolerance to meds. Now, the Zanaflex knocks me OUT at night, and so does the Ambien (of course it does). But, the 25 mg spread out during the day have not made me sleepy at all.

Our bodies are all different, and we all have different reactions to meds. If you can take benadryl, or maybe ask for that other drug, the Asthma drug/antihistamine (theres a post on here about it somewhere), you may not have the same reaction and can get that antihistamine help for the mast cells.

pm me if you would like to talk! :)

[Romans8:28]

The instill meds are the only thing that really work for me too! If the Elmiron doesn't work I would recommend them. Mine have lidocain/marcaine/sodium bicarb and solu cortef but I get about 5 days out of each treatment! This weekend I had and bad flare and this was the first time I couldn't just pull out of it with one treatment but even then in just a day I'm MUCH better! I can't live without these, and yes it's a little tough to get used to doing yourself at first but it really does get easier and I don't want to go back to them doing it!!! Hang in there Sandy!!!

[sbelle474]

massagedoula, how are you feeling? I will keep you in my thoughts and prayers that the headaches will subside and you will continue to get better! I started the elmiron about the same time as you and think it is working! :) I just keep a positive attitude for all of us. I hope you feel better and that you are able to take elmiron to make you better. Wishing you the best.

[pj77]

Don't give up on it just yet. I haven't had the headaches in like two weeks now. I started it around the same time you did. I've been taking it for like 5 weeks. But I swear I did have the worst headaches for 2 solid weeks and the would not go away -all day long-and no medicince helped. That is when I dropped from the 4 pills a day to the 3 a day (one in the morning , two at night). I wasn't sure if the headaches were the Elmiron or tension/stress. But now I think It was the Elmiron.

If you have started again, try taking one in the morning (not too early) and one in the evening (not to late). And see how that goes for awhile. Maybe later you can add the extra pill in - in the evening.

I am back to the 4 a day now. Good luck!

[diane57]

I also had slight headaches the first few weeks I was on Elmiron, I didn't change my dose and the headaches went away by themselves. I hope this happens for you, Massagedoula!

[icsonja]

HI massagedoula, I am the one who wrote to you about elmiron instillls,I have been doing them for about two years now and I have hunners ulcers in my bladder which I belive the elmiron instills have healed up greatly. I also add in lidociane and sodium bicarb and use a tiny 6 or 8 french foley cath with alot of lidocaine gel on me and it first( That is one trick I have learned for thoses who are cathing, let the lido caine gel set up to 10 minutes use a cotton square and soak it and leave it be and then cath, it won't hurt, so you wont be as tense and then all will work better)wow that was windy, sorry. :bonk:
But you would easily be able to do instills and work, and I just like the idea of putting the medication right where it needs to go, why add MORE drugs than I have to to my bloodsteam. Plus, it takes much less when it doesnt have to go thru your bloodstaem and finally reach your bladder. I read some where that bt the time meds reach your bladder they are filtered out about 85%.
I wish you all the best and hope we arent overwhelming you with advice!
Email me if you have ??? at icsonja@sbcglobal.net

[massagedoula]

update:

This is day 3 of restarting and no headache yet! (Though I am still losing a little hair here and there....) So.....I'm hoping for the best! If is doesn't work out I will ask about the Elmiron instills....but I don't like the catheter idea, even with the lidocaine, more for fear of UTIs than pain of insertion....

[Janie Miranda]

oh good Emily. I'm glad you are doing OK with the elmiron again!! I'll keep my fingers crossed for you!
jane

[purpleviolet]

Hi Massagedoula,

You were having a rough time with the Elmiron! Are you taking it out of the capsules like many seem do? I would give that a good try before moving to instills. Maybe it will still work that way. I can't believe they didn't call you back from the U. Hope you get to come to IC support meeting Thurs., but if you can't make it we will just have to meet sometime when you come to Seattle for your classes or doctors appt. PV.

[JaniceB]

I hope it goes OK for you. I am hopefully going to start Elmiron later this month or next, after my last clinic appointment (11/22) in the amitriptilyne study. So I've been reading alot of the Elmiron posts. Your situation sounds alot like mine so sure am hoping it works for me to.

As for drs not calling you back, yep, been there, done that. The first uro I had, was terrible. I called 2 or 3 seperate times about things - am still waiting for return phone calls from back in AUGUST (don't worry I'm not holding my breath!) LOL. I've given up on that one!

[Cricketmk3]

By all means, take it out of the capsule. I have taken Elmiron for two years and I simply open the capsule, drop it on my tongue, and drink. No biggie!

[massagedoula]

I am doing fine with it in the capsule now...No headaches anymore.

[vm]

Yay!!! :)