meds. for inflamamation

[Dianne]

I've been on motrin for 2 yrs., 800mg. at bedtime. I'm worried about the long range but it's the only thing that makes it possible for me to lie down. I need a list of every mainstream and alternative that deals with inflammation to see if I've missed anything. I've tried: aspirin, serraptase, MRT, EPO, Algonot, quercetin, bromelain, gotu kola, omega's, vioxx, aloe vera, GS/chrondoitin (can tolerate N-acetyl glucosamine - that wiped out my vulvodynia but doesn't help the bladder). On the instillations I've done elmiron, DMSO, uracyst, cystistat, heparin, lido, aloe vera juice, solu cortef. I know I've done many others but they aren't coming to me right now. If you've had any success with reducing inflammation, please share the specifics. Thank you.

[kadi]

I flare horribly from Advil/Motrin.
Recently I tried Etodolac for an inflamed nerve in my face. It didn't bother me as much as Advil, though it was still a little irritating. Maybe that might help.

Just wondering, is it possible you've had so much trouble getting your pain level down because the Motrin is constantly undoing the effects of the other meds? I know that even 1 pill of 200mg Advil is enough to make me really IC- miserable for 2 days.

Good luck! Maybe someone will come along with something new!

[Dianne]

Thank you, I've tried without motrin a number of times and the pain is unbearable. 800mg. at bedtime takes away that horrible burning until late a.m. the next day. I know most IC patients can't take motrin but in my case, it's the only thing that has ever worked. I still keep looking for something else though.

[ICNDonna]

Motrin can be a horrible bladder irritant. My husband takes Lodine for arthritis and it doesn't have side effects as bad ad ibuprofen.

Donna

[Dianne]

Donna what color is it since dyes make me itch? It'd be great to find something that works as well as motrin for pain but without all the water retention. What side effects are less? Is it considered safe for long term or just same category as any other NSAID?

[ICLori]

You know, I was thinking, maybe you are right in wondering if this is actually some type of nerve entrapment rather than the traditional form of IC...I was just turning this around in my head...because nearly every IC'er I know gets a flare from Motrin.

That got me thinking - what if your theory about it being the nerves and not the lining of the bladder is correct? That would explain this - if your lining is intact, then Motrin would not irritate the bladder further. And it would work as a pain reliever or work to silence the entrapped nerves or whatever that is...you know?

Can doctors tell where pain is coming from? I mean, they say that even "normal" bladders can have glomerulations like an IC bladder. And sometimes an IC bladder can be completely free of glomerulations. So how do doctors know for certain if the pain is coming from the nerves in the lining of the bladder, or nerves that are up higher like in the pudendal nerve area or the back? Would the potassium sensitivity test give a definitive answer on that?

IF it were nerve entrapment/damage rather than the lining of the bladder....that would explain why most of the standard IC treatments didn't work - and why you are able to tolerate Motrin....

I just don't know....

Anyway I hope you find something that works for you soon. I know you can't tolerate Cytotec, or I'd recommend that medicine that combines motrin and cytotec, forget what it's called, because the Cytotec would protect your stomach lining.

Well, maybe you won't have problems with the Motrin, not all people do, maybe you can just keep taking the Motrin without any worries.

Blessings,
Lori

[Dianne]

Thanks, Lori, I've always wondered about that since my case seems different. I've been to orthopedics, neurologists, neurosurgeons, re-hab drs. and they all laughed me out of the office. I've had nerve blocks and MRI's, ultrasounds and cat scans, nothing. The only thing that makes me think no on that is Azo gives me such tremendous relief. If it was a nerve then it seems that numbing up the inside of my bladder with Azo wouldn't change anything and it does. I printed off the post someone put up yesterday about the illeal-femoral nerve and dropped it off to my OBGYN this a.m. I appreciate all ideas and input though.

[akrose]

Hi Lori and Dianne- the med is called Arthrotec- taken by the elderly with arthritis symptoms- mixes and nsaid with our famous med - cytotec. now for the good news, minimal bladder/urethral pain today, feeling good. doing the home care job and smiling alot. oh and one important thing- went to church last night and my pastor- mark stafford- gifted in healing. spoke a word of prophecy and it went like this- if any of you, sitting out there are having a disease or pain in an area that is too embarassing to talk about- come to the front. well, we all know that this is a very embarassing problem and we sure don't want to talk about it in front of a group of strangers, but i went to the front. i closed my eyes and thought about god and receiving healing, and Pastor mark came to me and laid his hand on my forehead and it was like a bolt of lightening went thru me, and he called this dreaded disease out of me and I started crying happily. and today is better day than any before. so listen ladies- get yourselves to a good healing church, not a dead one. your friend- aileen, and thank you Lori for telling us about Cytotec. I am eating golden yellow apples- and no burning. so much better than yucky pears.

[akrose]

this is day 5 on cytotec 200mcg every 8 hrs. aileen

[ICLori]

Hi, Aileen, I'm thrilled that you are feeling a little better, and also that God worked through your Pastor to help you heal!

My Godmother always told me, pray to God, but also do your part...I was thinking in this case...might be wise to continue to take the medicine in case God is also working through the medicine...(I believe God works through many people and in many ways.)

So...not to be too much of a pain in the neck, but do you feel that Cytotec has made somewhat of an improvement in your symptoms?

When all is said and done, I wish I could have some kind of a poll...you know, like for the people who have taken Cytotec - I could ask, how many were able to tolerate it...then, of those who tolerated it, how much benefit they feel they received from it (like they would say, I was 50% better after one month, 70% better after two months, etc. just as an example.)

I just wish I could really get a good feel as to whether or not what the study says holds true...if this medicine might be helpful enough, to a large enough percentage of IC'ers, that it might be useful. I just wonder if I am a fluke, you know?

Blessings,
Lori

[ICLori]

Dianne, I'm wondering, have you tried using Motrin around the clock, 24/7? It helps you so much at night - if you were able to tolerate it all the time, would it give you a pretty good quality of life?

Blessings,
Lori

[purpleviolet]

I'm going to my reg doc tomorrow and going to ask for a prescription for cytotec to take after I'm done with Bladder-Q ( which I temporarily halted because it might have been making me tired ontop of amytriptyline) Does anyone know what to take with cytotec to stop the side affects (stomache cramps?) PeeVee

[akrose]

I can't really say what the difference is just yet. BUt today was a comfortable day, unless my bladder was really full. So I think I need to continue on the med and wait about one month and tell you then. I am still taking Elmiron 300mg bid, n-acetyl glucosamine 750mg bid, calcium citrate bid, neurontin 300 mg bid, amitriptyline 25mg po qhs, atarax 10 mg po qhs and if at night I have pain ativan 0.5mg po qhs. so I will just keep on with the above till I am exactly like you- without symptoms. It would be great if we could get a little research study going here in our group in about one month. it would be valuable to my urologist, i think. good night to all, aileen

[Dianne]

On the motrin when I tried to split the dose for better coverage what happened was increasing urethral pain. It seems that I need the break between doses or I pay for it with urethral pain. I also tried splitting the lasix into a tiny amount twice/day and same thing happened. I just can't handle drugs passing through. Ditto neurontin. So I save the big guns for bedtime.

[ICLori]

Hi, Dianne, Oh, okay, that makes sense! So your urethra just kind of has a limit on how much irritation it can take! That's how I was too - meds just really made me flare. Well, I hope that the nurse can help you and put you into remission hopefully!

Hi, AKRose, I wonder if you would be willing to copy and paste your reply about Cytotec to the Cytotec thread? I was thinking people who are curious about this might want to be able to read all the results in one thread....or maybe I should make a new thread, "please tell me your experiences on Cytotec" so that it can be kind of condensed down to one page or something for people who are curious?

Just trying to figure out how best to work this...

You know from what Norm said, antihistamines (like Atarax) actually work against the Cytotec - because they dry up the mucous in your bladder while Cytotec tries to make it jucier - might be worth it one day to experiment, keep a voiding dairy/symptom diary and see if you are better or worse if you go a day without taking Atarax.....

You know what really surprised me? When I was doing voiding dairies for my Bion, and before the surgery, I had to do a diary where I'd been off all meds I had been taking (high dose Elmiron, Atarax) for a week - and my symptoms improved when I went off the meds that were supposedly helping me! I realized then that these meds that were supposed to be helping me, were actually making me worse!

Keeping my fingers crossed for you that the more comfortable bladder thing will continue, and get better and better as more time goes on!

Blessings,
Lori

[akrose]

I don't know how to paste my articles over to the cytotec thread. But i will give your suggestion a try today, i won't take the atarax at night starting tonight, and see if that makes a difference, because it might work against the cytotec. Also, since i am peri-menopausal, the doc wants me to start using estrace cream, well if i use the vag. applicator, I am in pain all day, in the pelvis. so I tried just placing some cream around the perineal area, still in pain with burning. so i am just going to stop using that too. even though premarin cream states that continued use decreases vulvovaginal pain and burning. I am still hoping for the Cytotec to work!!! aileen

[ICLori]

Hi, Aileen, I've heard of people getting worse on Premarin, too - we all just react so differently to hormones - and it seems like for most of us, hormones one way or another make us better or worse - some react badly to progesterone - sounds like you might be having a bad reaction to that type of estrogen. I wonder if there is a different type of estrogen cream they could let you try? I remember I read on the boards about a woman taking Premarin pills, she said those made her worse but a different type of estrogen made her better.

I'm sure hoping this will work for you - I know it's not 100% yet but I hope it's making somewhat of a positive difference...

Blessings,
Lori