WHAT PAIN MEDS DO YOU TAKE?

[ibtracy]

Hi there. I was recently diagnosed with IC in Febrary of this year. I am experiencing a horrible flare right now and don't know what to do. My urologist doesn't believe pain is associated with this disease and my medical dr up until last week was willing to work with me on pain issues. I called in for a refill of Lortab 5 and they gave me 10 pills to use from Friday until today. I've tried to explain that this isn't working, it's taking the very edge off but that's about all. I can't go into work today because the pain is so intense and quite frankly don't even know what to beg him for when I go in this afternoon.

MY LIST OF MEDS...
Elmiron 300mg x3 daily (been on for 3 wks)
Pyridium 200mg as needed (joke - doesnt do anything)
Detrol LA (frequency and spasms)
Hydrocodone (Lortab 5) 1 tablet every 4 hrs as needed for pain
Esclim Patch (estrogen patch for HRT due to surgical menopause)
Macrobid x1 daily as a preventative
Elavil (just started last Friday)

What has worked for you all for horrible chronic pain during a flare? How long before this Elmiron works and what will it do? I'm sorry to ask all of you to do this, but need some quick advice before I go back to the dr this afternoon. Thanks so much and I hope I'll get some good responses.

:confused: :( toilet

[DanaW]

Hi Tracy,
I feel for you. I looked over your meds. and noticed you take Detrol. Does that help you? It never did for me. Also, the daily antibiotic? In my opinion, I would not take one unless you have an infection. As far as your Uro. not understanding your pain. That is a red flag. I would look for another Uro. My Uro. has been treating my pain since last late summer. I am now getting a referrel to a pain clinic. That may be your next option. Tell him that if he isn't willing to treat your pain, then, you want a referrel. I take 2 Percocets every 4-6 hours for pain. (which is all the time, now) I have tried the DMSO treatments without success. I am now getting referred to the pain clinic in town.
I also take Prozac,(for depression) Atarax (at night) and the Percocet. Is lortab a generic version of Percs or Vicodin? I hope you feel better soon. Let us know what happens, ok? grouphug

[Iris]

Hi Tracey, sorry you are going through so much pain right now. I was put on Detrol and Ditropan, which did not help me at all. I changed urologists, and he tried Elmiron and Atarax, but that did not help, I am now on Elavil, and Effexor-XR, and Ambien for sleep. I was put on Vicodin but could not tolerate it, and Percoset, could not tolerate that either. I take Ultram for pain, and so far for me, it has worked. I have a great Nurse practitioner, and a wonderful Urologist and they agree on my meds. I will be seeing both of them next month for a check up. Hope that you can get some help with your pain, I do not understand a uro who thinks there is no pain. IC pain is worse than any pain I have experienced, and I have had two children, and a miscarriage, and nothing came close to the IC pain I was experiencing. Hope you will get some help fast. Keep us posted and soft hugs Iris. hi grouphug

[tigger_gal]

Tracey,
I am sorry you are in so much pain.. Your doctor is very wrong pain plays a very large part in some IC patients. I am an icer who constantly has pain. I do take vicodine for pain.. hoping that you feel better soon
Brat

[ibtracy]

Thanks alot for your replies. My dr appointment turned out well today. I saw my medical dr who is more willing to treat my pain than the uro is. He put me on the duragesic pain patch and took the detrol and pyridium out of the list and added urised. I sure hope this works, the pain patch is only a 25 because he wanted to start me off slowly and work my way up - but so far it's not doing much for the pain. The Lortab worked better but will give it some time and see what happens. He said if this doesn't offer help, we might have to go with Oxycontin due to the fact that my liver enzymes are slightly elevated. Thanks again for your responses.

[Dixiefireball]

for pain i take perocet 10.325 one to two every four to six hours as needed and heparin and maracaine the dmso. which helps me alot i take them at home and can do them up to three times a day if needed.

[creolelady]

I take Elmiron twice a day. Just started Nerontin, 300 mg three times a day. Percocet as needed up to three times a day. The pain doc I saw says not to take more than that and I should be ok to take it for a long time. That is about the only good thing that came out of my visit with her. She wants my family doctor to control my pain pill prescriptions. Trying to get refills from my family doc is hard. I have been on the phone for two days now and still waiting. Good darn thing the nerontin is taking the edge off and as long as I am good on my diet and drink alot I can manage. I am a stay at home mom with 18 and 21 year olds still at home. I love having my children
around. It is a blessing that they are independent and that my husband is a dear and has my best interest at heart, at all times. If only all doctors felt the same.

[jackie3]

I have read on the IC board before that someone had used aloe vera for IC have you heard of this and how much would you take? Are they in capsules? Do they help? Thanks

[emilyrose197377]

I take elavil 50 mg at bed time, kepra 500 mg twice a day ,vicodin 2 a day, pyruiduim 1 tablet 3 x a day and noraflex a muscle relaxer 100 mg twice day.

[ibtracy]

:help: :help: I live in the midwest where there isn't a good education of IC and it's sometimes debilitating pain that accompanies it. My MD is trying to get me off my oxycontin (which after 6 months was the only drug that helped) he keeps telling me that he's going to loose his license to the FDA if he continues to prescribe it to me. I don't understand, I think it's a cop out because alot of you on here are on oxycontin, morpheine and other meds and your doctors aren't getting their licenses taken away, nor are you doctors taking or decreasing your meds for his same fear. My uro says the state police will come after him if he helps me with pain long term.


Where does one turn in this situation? They've cut my Oxycontin dose in 1/2 and dropped my Percocet 7.5 down to just Darvocet which does nothing. The oxycontin is working so hard to cut the pain and it just can't do it.

I'm willing to travel but don't know where to turn, anyone live in the midwestern states that has excellent care with pain control that can recommend someone to me? I live in Iowa but border Nebraska, South Dakota and Missouri but will travel further if I can find a doctor that's knowledgable about IC and the pain that it causes some people and can help treat my chronic and everyday pain. :toilet: :help: Until then, I'm just trying to get by on what little pain control I have.

Please help...
Tracy

[kiffy313]

Hi,
I am on the Duragesic patch, have lortab for b/t pain. It took me a while to leave the patch on, as I am a "med phobe"...but, turned out the "pain phobe" in me won out LOL...it works well for me, I do see a PM Dr. and she is great!!! It says on the patch handout it takes 12-18 hours or so for the med to "build up" and get in your system, that may be why you are not getting much relief yet...Talk with you Dr. and see what he/she thinks...
Take Care,
Kif

[Pain]

From what I've heard...there is un underground push that IC patients do not need/should not be prescribed Oxycontin as it's not a 24/7 pain disease which is BS...I have five years of solid 24/7 pain to prove it. I expect to see more and more of us have to suffer needlessly in the future. I won't be able to survive with the kind of pain I'm in..and short acting do not make sense...you end up taking MORE of the drug, not less!

[lilfox]

Hi Ladys , I too had a hard time getting pain med's after uro. passed . I found a pain management clinic and now see the DR. 1 time a month and he has no problem giving pain med's. maybe you can check in your area and see if there is a pain clinic or pain management Dr. that will take care of you.
Hugs to all . Hope this helps. Take care

[rosesitty]

Tracy - I HATE taking so many meds too! I'm on oral Elmiron, Pyridium (or Urelle), Valium for PFD, Sanctura as needed, Benadryl (I couldn't take Atarax, it cause severe urine/water retention), Macrobid (for a UTI), Diflucan (for a yeast infection) and the UTI was SO BAD that she prescribed oxycodone. I can't take Vicodin because of the Tylenol. I feel really, really bad for my liver right now! I should be done with the antibiotic and Diflucan by this weekend, thank god. My consult uro wants me to take Elavil, but my home uro wants me to take Elmiron for at least three months to see if it will work. I don't want to add something else, so I'm waiting to see what happens. I'm not on the oxycodone daily, I only used it trying to survive over the weekend with the UTI until the antibiotics kicked in. I hope you can find a doc who will address your pain.
Stephanie

[kmvps]

Hi everyone. I am new to this site and am so happy I found it. I am 26 and was diagnosed with IC in early 2005. I have also been diagnosed with Crohns disease(which I believe has been in remission for years now) and endometriosis. My doctor and I have also discussed the possibility of fibromyalgia (which I think I have). Before my IC diagnosis I was being treated by my gyno for my pelvic pain (I lived in West Virginia) but then I moved to North Carolina and it has been trial and error. My primary care doc was willing to treat my pain (I WAS taking 4 10/500 hydrocodone a day) but after sending me to another uro she will no longer prescribe them. I have provided her with so much literature concerning treating IC pain but she wants to take this one mans opinion over all the research. When I met with the Uro, his first words were, "so, you have IC....you probably know more about it than I do." GREAT! I told him that I had tried Elmiron, Atarax and Elavil for a long time with no success but that DMSO treatments did help but were only able to take the horrible edge off. So I got one at the office, then he came back in the room and gave me prescriptions for Elmiron, Atarax and Elavil. Did he listen to a word said? He did however refer me to a pain clinic who will teach me how to "breathe" through the pain. I have called to set up an appt with this other doc and have called everyday for two weeks only to get an anwering machine and no return phonecall. I am so FRUSTRATED!!! I take birth control continualy since it seems to help some and have majorly changed my diet. I have educated myself so well about this disease but I feel like regardless of all the information I present to the doctor my pleas are still going in one ear and out the other. Without narcotic pain meds I have no normalcy in my life. I can't work,eat, sleep, or move because of the pain. I guess I don't have to mention that I haven't had sex with my husband in....honestly, it's been so long, I can't even remember. I got all my records from my primary care and have made an appt with another but I am so SICK of tyring to find someone to believe me when there are junkies who walk into the doc, say they have back pain and leave with pain meds. What, just becasue I don't have a giant bandaid wrapped around my whole body and I try to put on nice clothes and makeup when I see the doc then I must be drug seeking. I'm sorry to go on but it seems like after reading this, a lot of you have experienced the same judgement or dificulty obtaining the meds we do so truely need. Any suggestions?!

[vocalsgsc]

Hi guys,
I am currently taking Elimeron 3X a day, The Fentynl patches 50 mcgs and Percocets 7.5/500 every 6 hours as needed. My family doctor is GREAT!!!!! She is willing to help me and listen to me and we will try whatever she thinks or I come to her from the website as a suggestion. I am so tired of this pain. And the problem is all you can do is try to manage the pain. Thank God right now I have a wonderful doctor and she knopws that I am not pain seeking. Now my pharamancy and insurance has been treating me different until I have to explain the diagnoisis. Until that the pharmastist looks at me like I am a druggy! That makes me so mad because I am very antidrug abuse as my parentswere drug abusers. I just keep trying.

[Kara29]

Tracy,

To Answer your original question without having read everything that everyone else wrote.......

I take for Pain:

Lyrica 150mg 3 times daily

As Needed Meds for pain:

Vicoden 7.5/500 one every 8 hours
Fentanyl Lollipops 200mcg every 6 hours
Klonopin .25mg 2 times a day
(The Vicoden and Fentanyl are taken opposite or substituted for one anther)

For Vestibulodynia:

200 mg Diflucan Weekly

[jess_78]

I just recently change pm docs and I love my new doc. He never makes me feel bad about taking pain medicine and he is very nice and understanding. If I use all of my breakthrough meds in a month he automatically writes the new script for a few more without me even asking. My old doc never changed my medicine or gave me breakthrough meds even though my pain level never got below a 6 he would just say " Well, that's better than a 10." It may be better than a 10 but I wasn't functioning or living a normal life and isn't that what pain management is for, to help us live somewhat of a normal life. Anyways, I've babbled on long enough and if anyone would like the name of my new doc I would be glad to pass it along just send me a private message. If you live far away it would be worth the flight to see him, especially if you are in a lot of pain. Take care everyone, Jess

[daphne]

valium helps too

[Claredale]

Once I get through my doctor's nurse (she is young and very unaware of pain!), I have no problems getting pain meds from my doctor. I do go see him every month for follow-ups. I research every med that I hear about on here and other sites. I take my research to him and he actually listens to me. My doctor has several IC patients, so we are not "strange" to him. He is my 4th doctor. I would still be going to my previous one, but she is up in Knoxville now! She did recommend my current doctor and told me that he was very knowledgeable on IC.

My problem is that I have the interstim implant, which really helps with my ferq/urg, but we no longer have a full time doctor in our area (I live in a large city!) that I can see to manage the care of my implant. My doctor's office has a doctor that comes in about once a month. I am afraid to get my settings changed since if they are off at all, I can't use my implant until he comes back the next month. When I had Dr. Ragi, there were times that I saw her 2 or 3 times in one week to get the settings just so.

For anyone that has doctors that don't understand IC or don't believe that pain is related to IC, I truly pray that y'all can find a doctor that will be able to help you. As all of us know, we just want to live normal lives. It is not our goal to take pain meds to get a "buzz", but to continue with our lives! I can honestly say that I have never experienced a "buzz" by taking Lortab (not that I ever used drugs in my life!). If I am just stupid and don't know how a "buzz" feels, then I don't see what the big deal is for people to want to be an addict. All I do is take my meds, get ready for work, go to work and do the best I can at my job, then go home and get us much done in the way of house work and spending time with my family as my body will allow me to and then take the meds I need in order to get as much rest as I can so that I can get through another day. I really don't need much in the way of pain meds during the day, but when I do, I am so thankful that I have a doctor that understands!

Hugs to all!
Tracey

[kmvps]

hi everyone. just wanted to tell you my recent experience with my new doctor to offer you all some hope that there is someone out there that cares and will help. first of all in my last post, i told you that my uro had referred me to a pain clinic that i had been trying to get a hold of for weeks with no luck. well, it turns out that he had referred me to a clinical psychologist who does not have the ability to even write scripts. can you believe that? i totally agree that chronic pain needs to be attacked different ways (by learning how to deal with it as well as taking meds and physical therapy) but for him to refer me only to a psychologist really rubbed me the wrong way. I asked the doc when i finally spoke to them..."are you suggesting that my pain is all in my head?" of course not but narcotic pain meds were only detrimental and i needed to figure out another way of dealing with the pain. the uro did offer bladder stretching. where he would put me under general anesthesia once a month and stretch my bladder until it bled. sounds fun, sign me up!
anyways, i went to another doc...i don't even know what number he is....but i love him. not once has he made me feel guilty about needing pain meds and he has actually done some research so he could better treat me. he first prescribed me my usual hydrocodone 10/500 4 times a day as needed but stressed to me that he really wanted to find a long lasting narcotic that would help. next visit he switched me to opana er. one every 12 hours. when that wasn't working he gave me the short acting opana to take for break through pain. i have never had luck with morphine products and called to tell him i was still in pain. he took me off of it (all over the phone) and put me back on the hydrocodone until i could get into the office to see him. then his staff called me the next week to see how i was feeling. we have discussed oxycontin and i think that is the next path we will go down when i see him this coming monday. he has also given me samples of cymbalta to help with fibromyalgia and the depression that accompanies chronic pain. i haven't started it yet. i am waiting to clear up a bladder and vaginal infection (yay!) and get my pain meds straightened out before throwing another drug on top of the mix. does anyone take cymbalta? if so, any luck or anything i need to be aware of?
sorry this has gone on so long, but just wanted to offer the possibility of finding a compassionate doctor who wants to help. i have been through a long list of doctors, trying to find the right one, and a long list of medicines. right now, i feel like sometimes the only thing i can do is treat the pain because everything else i have tried to treat the ic has been unsucessful. if any of you live near wilmington, north carolina, i would be more than happy to pass along the name of this doctor because i know how hard it is trying to find one. best of luck to you all and i can't even explain how much i appreciate this site. i often feel like it is the only support that i have and that you all are the only ones who truely understand. thank you!

[hdb1982]

Any dr who says IC is not painful is an idiot. If that is the case why is it also called PAINFUL BLADDER SYNDROM? I take loratab 7.5/325 4 x day( which is not a generic Vicodin it is its own drug) Neurontin 300mg 3 x day and on Monday I started Elavil 10mg 1 x day and Ibuprofen 800mg 2 x day. I am already having retention problems since starting the Elavil which is one of it's side effects. I think you either need a nes dr or a referral to a pain management clinic. All of the one's I have called do not treat IC but hopefully you will have better luck.

[dancemomof2]

Becareful with the Ibuprofen it cause alot of IC'er more trouble and could be your retention trouble itself.

[hdb1982]

I have only taken the Ibuprofen once since he rx'd it. I am on my4 dose of ELavil and am begining to have mild panic attacks again. I don't want to stop it though because I want to see if it helps first. If it does help and the panic attacks continue I will talk to my dr about going back on xanax. It seemed like my IC was a little better when I took xanax.

[dancemomof2]

Sure hope it works for you, I just knew how awful I feel on Ibuprofen when I use it.

[HillaryD]

:cussing:
I was DX'd with IC in early 2003 & have never had problems getting pain meds for it until today. I've been lucky enough to not have a flare up for 6 months now, but one started yesterday. I just got insurance again, so I went to see a new dr today, just a general md, because I thought that maybe I had a UTI instead of a flare & I've also got a yeast infection under my breasts. I had an old RX of Percocet that I was given in 2005 when I had my Hysterectomy. This medicine is 2 years old and when I tried to take one a couple of months ago it didn't help at all. I showed it to the dr and asked if he could write me a new RX for it & he wouldn't. He wrote me for Vicodin, which I can't take & told him I couldn't take it & he still wouldn't write the Percocet for me. I am not a druggie, obviously since I've had this Percocet for 2 years now- was given #30 and still have 7 pills left. Why do dr's do this? Is Percocet that much worse than Vicodin?
The only good thing I can say about this dr is that he got me an appt with the top IC dr in the state for tomorrow. I sure hope this guy can help me out some how. I have a friend that has seen him and she said he has no problem writing pain meds, so that gives me some hope. Now all I have to do is try to sit with a heating pad in this 100 degree heat and wait for tomorrow.
:confused:

[daphne]

I hope your appointment goes well. I get vicoden and it helps. Percocet makes me itch from head to toe. Do you have any diazapam? (valium). That sometimes helps to calm the spasms if you take it with pain meds. also the heat and I sit in a hot tub. If it is still really bad when you see the Dr. tomorrow ask about an emergency instill. When I am really bad I get these 3x a week for a week or two and they usually help (may take a few days). I wish you good luck. If the Dr. is afraid to give you pain meds ask for the name of a pain management specialist. iI see one and get my meds every month. good-Luck!!:pray:

[HillaryD]

Daphne-
Thanks for your reply. Percocet makes me itch from head to toe as well, but helps with the pain. I hate the itching! And, I also can't sleep when I take one. I do not have any Valium, but I take Clonazepam at night for Restless Leg Syndrome, and I know those two medications are very similar. I am hoping they will give me an install tomorrow, I haven't had one in such a long time and I need it! Thanks for the good luck wishes!:angel:

[daphne]

maybe you can try some benadryl for the itch and it will also help you sleep. You need to get a different pain. Percocet is not the med for you. There are so many different choices. I also take lyrica 2x in the am 1x at noon 2x at bedtime it is for nerve pain. It works great and has very few side effects.

[HillaryD]

Again, thanks daphne for your reply. You are probably right about Percocet not being for me. I am so scared to try something new though, because I can't take Vicodin or Lortab. I wonder what he will prescribe? I have tried Neurontin and Topamax before and they both made my entire body swell up & I couldn't stand it. I hope he will give me something that will help me and not give me any side effects.

[soccermom32]

I am fortunate that my pain doctor believes I am in pain. He gives me vicaden with many refills. I also use Pyridium and Urelle. Pyridium with a vicaden though and my pain is gone within an hour.

I only use it when its a real flare. Sometimes I may need vicaden like 2 or 3 days in a row, but never more. I also use it for the first 2 days of my period b/c cramps flare my bladder. For the rest of the time that I get a twinge of pain or something, I use the arthritis Tylenol - its 650mg compared to 500mg and I take 2. They work really well.

I don't know what I would do if my doctor didn't perscribe me pain meds. I would be devastated. He is well into his 70's too....he better live forever and be practicing forever if I'm going to have this dreadful disease forever :pray:

Good luck.

[sickofmybladder]

I am newly diagnosed and so far have not received any pain meds - am leaning on my remainder of the post op meds....... I go back tomorrow and my husband has indicated that I have to ask for something.... I don't want to seem like a "drug seeker" -

I am consistently at a pain level of 4 & and at night up to a 6 or 7 (I base this on - if I could I would be in bed with the 4 - but I can't - at night I can't do anything after working all day but go to bed with heating pad - my mom says I'm not stating my pain correctly - that it sound higher to her based on how I feel - my husband says the same).

Do you have any suggestions how I can approach this? I really want some level of life back......

[Claredale]

There is a pain scale in the patient handbook, but the way you are describing it sounds good to me. When I am at a 4, I say the bed is calling for me and when I am at a 7, I am in bed or in my comfy chair with my blanket and heating pad! I am still not comfortable, but I am doing the best for myself. When I reach an 8-9, there is nothing to make me comfortable.

Check out the pain scale. It will definitely help you and the doctor will know that you have researched your pain and know what you are talking about. I honestly feel that doctors that deal with patients with IC know that you have chronic pain and will need pain meds just to function. All that is in the patient handbook as well.

Happy thoughts for tomorrow!

Tracey

[boukie]

for flares i take 10 mg of vesicare and 20 mg of ditropan. I was just in a flare for the last 2 days and I missed work. Now I am finally feeling some relief. I would find a diff. dr if he's not listening to you. I hope things simmer down for you.