WHAT PAIN MEDS DO YOU TAKE?

[ibtracy Registered User Find all posts View Profile Close 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.

toilet

[DanaW IC Friend Find all posts View Profile Close 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 ICN Member Find all posts View Profile Close 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 ICN Member Find all posts View Profile Close 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 Registered User Find all posts View Profile Close 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 ICN Member Find all posts View Profile Close 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 Registered User Find all posts View Profile Close 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 Registered User Find all posts View Profile Close 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 Guest Find all posts View Profile Close 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 Registered User Find all posts View Profile Close ibtracy]

My MD is giving up on me.....after this refill I have no where to turn

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. Until then, I'm just trying to get by on what little pain control I have.

Please help...
Tracy

[kiffy313 ICN Member Find all posts View Profile Close 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 ICN Member Find all posts View Profile Close 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 Registered User Find all posts View Profile Close 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 IC Friend Find all posts View Profile Close 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 IC Friend Find all posts View Profile Close 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?!