Ouch! Ouch! Ow!! - Interstitial Cystitis Network Support Forum

clementi60 · 08-22-2006, 02:08 PM

I am having a serious flare-up and don't quite know what to do. I have oxycontin for something else and today it took 60 mgs to get things quiet. Now it hurts again. I was offered elmiron but my neurologist says it makes your hair fall out and from what I have read here, it doesn't seem to work all that well. I have been taking aloe capsules and they have really been working - until today.I also see a pain management guy, but have never asked him for help with this. Should I? Suggestions?

ShePurzz · 08-22-2006, 05:08 PM

I had great results using Elmiron -- didn't lose hair, didn't have other problems -- the only reason I am not taking it now is that I had to start a different medication and the two of them seemed to clash -- I could live without the Elmiron -- I really needed the other.

I hope you will try it and see if it helps you as well -- we are all so very unique in our treatments -- I hope you get good results!

Mary

***ICNDonna*** · 08-22-2006, 05:14 PM

Only a very tiny percentage of people lose hair from elmiron. There are some risks with any medication. However, it can take up to six months or more to become effective so you might want to talk with your urologist about other treatment options in the meantime.

Are you following an IC diet? Do you smoke? The diet can be found in the Patient Handbook at http://www.ic-network.com/handbook --- and that single thing can really help keep IC under control.

Sending healing thoughts,
Donna

vm · 08-22-2006, 05:15 PM

Most of us on Elmiron do not lose hair. Only 4% of patients have hair thinning as a side effect.

Elmiron does not help everyone - that is true. The thing is that for those of us it does help -it helps A LOT and no one ever knows if they'll be part of that group unless they try it.

I do hope something can be done to alleviate your pain. Hopefully you'll find a treatment soon that works - even if it's not Elmiron. Just keep trying!

clementi60 · 08-22-2006, 07:18 PM

I have looked over the diets and I can't see anything Iam doing that is different. Last night we had a ham, potato and cheese casserole. Now what's in that?This morning I woke up in agony. I DO smoke, but I have been smoking for years. I don't think that's it. I don't know what triggered it, but it's not over yet and I sure wish it was. Maybe I'll call my pain guy and see if he has any suggestions.

***ICNDonna*** · 08-23-2006, 02:46 AM

Ham can be a problem, as well as cheese. ICers can usually have processed cheese, but the aged cheeses can be a huge problem. I have learned to read labels on everything and it really helps me with my diet.

Also, if you aren't feeling better this morning, you might try going without smoking for a few days to see if it helps you feel better. I know that when I quit 22 years ago it didn't take many days to know my bladder felt better.

Donna

tizib · 07-10-2007, 06:32 PM

Hi there,
Unless your ham was nitrate and natrate free (labeled that way) than I would think that is what caused your flare. Those chemicals are absolutely deadly to ICers and I would also stay away from cheese or be very careful with it. Some people have problems with cheddar if it is sharp...

**kadi** · 07-10-2007, 08:42 PM

HI Clementi,

Do check out the diet link Donna sent you, okay? The diet has helped so many of us,& no side effects & no insurance copays! For me, if I'm not following the diet strictly, no amount of medicine in the world will be enough to help me. My medicines only work for me if I avoid my diet triggers.

The only cheese most IC-ers eat are: mozzarella (Kraft bagged or Sargento slices for example), cottage cheese (individual cups only, the larger ones contain citric acid), string cheese, cream cheese (Philly Original, in the block. The tub cream cheese contains citric acid & just 2T of it gave me a 3 day flare). I can have a occasional slice of American cheese as part of a larger meal & with Prelief (an acid reducing supplement).
I've not had ham in years, my IC doesn't like it. It's a shame, because I was quite fond of it.

I know you probably hear this all the time for lots of reasons, but it would be a very good idea to find a healthier habit/treat/stress relief (?) instead of smoking. There is something in it that makes it harder for bladder cells to heal.

How long have you had IC?

Briza · 07-10-2007, 09:25 PM

The other suggestions were very good; diet is very important, even though some patients are much more sensitive than others, most of us have some triggers and hopefully you will determinee yours...it mostly takes trial amd error and avoiding the most commn irritants in the beginnng, you might not find the diet as restrictive as orignallly appears,
If Elmiron is your only med, look in to others...many of us have them listed in our sigs and most are protocol IC/vulvodynia meds. Best of luck to you
Bri~

Plsgoawaypain · 07-15-2007, 12:05 AM

I have found that anything pork flares my IC. I can't eat pork chops. I found this out when I ordered a loaded baked potato, which had a pinch of real bacon bits on it, and I have tried pork again in my years with IC to confirm the reaction. Yes, I know this takes a chunk out of your diet but I would rather do without and not have the flare than to enjoy a few bites of bacon!
Good luck, hope you ease up soon.

sunny day · 07-17-2007, 04:50 PM

Elmiron worked great for me. I did not lose hair. I just went from 300mg to 200mgs a day. I also use atarax. I also stick very closely to the diet.

amartaingirl · 07-21-2007, 01:05 PM

heres the deal with the hair
as i lost a bunch of mine.

if you are the skinny girl in the office..who is always Cold
you will have hair loss.

for me...began about 2 months into
and it took exactly 62 days...after being OFF elmiron for it to STOP Falling out.

its been about 4 months now...what fell out..hasnt quite come back yet.

if your vain..like me...the hair loss wasnt worth it.
the aloe vera...well...works well to prevent a flare.
but if a flare does break though...i cant seem to get it under control w/ the aloe.

you must try CYSTOPROTEK
i bought it in the ICN shop
and it seruiously worked in like 2 days for me...
sometimes i forget i have IC
thats how good i feel

i see if i can find that one post of mine..

clementi60 · 12-06-2007, 07:57 PM

I put in something about a flare-up and got all those lovely answers and I just want to thank everyone who took the time. I don't think my case is as bad as most of the people on this site. I seem to be able to control it with simple OTC medications. What seems to cause most of my pain is if I don't have a BM for a day or two. That is the way I always was and now I just have to be a little more careful. Again, I thank everyone who took the time to answer me. I am sorry I didn't write a reply sooner - I lost my password!! Thanks again.