sulfasalazine (Azulfidine) was one of the earlier UC drugs, a derivative of 5-ASA. Not prescribed much anymore. Yes, I've taken it. For many years I didn't have health insurance, I was cash pay so I would try to get an affordable office visit with a GI Doc, then stock up on scripts of the cheapest IBD drugs.
Azulfidine rarely does much for severe or Refractory UC anyway. There are a high percentage of UC/Crohn's cases that just don't respond to anything very well. Generally it takes a few years of messing around with every therapy they have to reach a point that they absolutely have to put you into a remission to keep you out of the Hospital. That's when they pull out the Prednisone and start down the track of immune modulators and biologic drugs, ramping up the toxicity until they shut down the immune response. I've already had years and years of Prednisone and thought my surgery was going to be curative (as we are told), but, really, I still have the same problems just a different variant that seems just as defiant to treatment.
Part of my problem as a Pain patient now is that I'm accustomed to being my own Doctor due to my 20+ years of self-managing my GI Diseases.
Articles on IBD and Pain Management are mixed at best. Studies don't really recommend Narcotics for most GI Diseases, and in most cases Narcotics makes things worse. My absorption and metabolism of many drugs may be compromised or unpredictable. Really not sure.
"Honeymoon from Hell" is exactly right.
Last edited by Isotope; 12-17-2010 at 10:13 AM.
Reason: Add to Shoreline
I've been a bit hair-trigger and reactionary this week, It's just been a tough one. Last weekend I didn't hesitate to reach for the BT Norco (Flag as problem), and did overlap the Opana with the Oxy the prior week, so, plenty of mistakes. Then this work week comes around and I'm trying to cut out all BT (old habit of thinking I can't be on pain meds and be at work) -which I realize is actually backwards..... And my dosing times have been all wrong for my work schedule, and I didn't account for the fact that the OxyContin does not last a full 12 hours, and the effects of tapering Prednisone from 60mgs to 5mgs that are making me a mental and physical wreck, yet again.... All conspired this week.
The past two days I've completely changed up the LA dosing times and added back the BT, and I think I feel a bit more stable now. The Honeymoon is definitely over though, it's just plain work now, and that's just what it's going to be I guess......
Maybe next week I can get an appointment with my PCP and run this all by him. Perhaps there should be adjustments, I'll be open to listening, and will try mightily to go with the flow of this...
It did seem easier to manage in the past when it was just me and Norco. Not that Norco was actually working that well -it was just barely taking the edge off, but better than nothing.
It used to be that my LA was Norco, my SA was Norco, and my BT was Norco. Easy. Break the pill in two and pick the best two times of the day, that's all there was ....
Last edited by Isotope; 12-17-2010 at 12:17 PM.
Any chance you could take a couple of weeks leave, while you work out the right dose of oxy for you, and taper off the prednisolone?
While tapering the prednisolone, getting a shot of ACTH can "kick start" your adrenals, make them start pumping out their own cortisone again, might be worth asking your doctor about.
If Oxy isnt lasting the full 12 hours, there is the option of taking it 3 times a day, many people do this. The 10mg dose you are taking equates to 3mg every 4 hours, about half of a 5mg Percodan, a very small dose, and i think an increase would certainly be in order.
There is also the option of trying MS Contin, that might last the full 12 hours out, because it uses a different time release system, most people on that manage well on twice a day dosage.
The desire to take medicines is what seperates man from the lower animals - William Ostler
Multiple anecdotes do not equal evidence - Me
Last edited by jonnstar; 12-17-2010 at 02:23 PM.
The Following User Says Thank You to jonnstar For This Useful Post: Isotope (12-18-2010)
No chance of taking time off work. I already cut my hours last year to half-time due to all of the Doc appointments I seem to have and the stress of doing my job, blah, blah.....
The timing of my doses was definitely an issue. I was experiencing a huge gap in the middle of the day from taking my first dose of Oxy too early, and the second dose too late.... 3X day may be the right answer. I will read up on MS-Contin and Kadian also (but not too much! LoL).
I am sorry that I'm dumping the blow-by-blow of the whole thing on you guys. You've been great, with really good information, keen insights, and solid support.
Isotope: I don't have any magic for you. I just wanted to tell you I feel for you and this sucks. Can I say that? I am having tolerance issues too but I'm still pretty young and I don't want to end up on 1,000 mg of oxy when I'm 50 so I decided to try to stave off asking for any increases. I have you in my thoughts though.
The Following User Says Thank You to Toonces1 For This Useful Post: Isotope (12-18-2010)
While 10 mg bid is a usual starting dose on Oxycontin, I am a little concerned by what you describe as your warm, fuzzy feelings on it.
ALL pain medications are going to loose that warm , fuzzy feeling after a few weeks on it. Those feelings are supposed to disappear. Especially with the long acting pain medications, in fact, I can't recall ever getting that feeling, long acting or short acting medications, although I have read others that have as well.
The idea is to reduce your pain levels by 40%-50% of what you experienced prior to the medications so that you are able to function reasonably in your daily activities.
It sounds like you are taking the pain medications more to help with the diarrhea from IBS, than for pain??? Or am I misunderstanding??
It may be that you do need a small increase , but I wouldn't be so sure that it is tolerance that you are experiencing so soon after being on these meds, but something else???
I highly doubt that any doctor, PM or GP, no matter how good your relationship with him may be, is going to allow you to switch around pain medications on a monthly or bi-monthly basis just because.
I've been in PM now since 1995 when I first had my shoulder reconstructed and developed RSD in it and my entire arm and hand as well, and there were relatively few "restrictions" when it came to how meds were prescribed back then to 2006 when I had my first back surgery, and developed CES, which led to my 2nd surgery in 2007 , and I have never heard of any doctor doing what you are asking about.
I have heard of some doctors who will have a patient stop taking any pain meds for several weeks to months to reduce tolerance, but that method is considered highly controversial and mostly ineffective since within days to weeks in restarting the medications, the former dose is attained and often surpassed.
It might help to reexamine what it is you are expecting out of the whole pain management experience and to talk with your doctors about other modalities that might compliment the pain medication in reducing your pain levels.
Best of luck to you,
My ortho surgeon uses this reduction method in order to get me ready for suregeries, so that the pain medicine will work like it's supposed to afterward, without having to use extremely high doses of it which is very dangerous. I've had 13 surgeries in both knees so I've been through this procedure quite a bit...it's not fun, but its not the most horrible thing I've had to endure ever. Knee surgeries are one of the most painful surgeries you can have and the extreme pain last for a while, so not haveing adequate pain management afterward would be a horrible thing.
You've been awfully quiet. I wish you'd drop a line and let us know how you're doing. I realize our posts might have seem kind of harsh, but I guess we just are trying to make you understand the seriousness of the questions/plans that you ask or take to you doctor, then can determine the course of your relationship for the rest of your PM life.
Please drop a note and let us know what's up and how you're doing.
I'm fine, just a rough week last week. Prednisone has a way of making me nutty (Pred has numerous psychic effects).
I've been learning so much here, and going through this acclimation to LA Pain Meds etc.... My Oxy 10mg (b.i.d.) with Norco BT may need some adjustment. I did just send an online 'note' to my PCP with a very brief update, and the promise to schedule an appointment.
I am just a little worried that he will tell me that he is out of his comfort zone making any modification. I've already looked in my Med-Directory to see if there any PM's covered by my plan -and I don't see any, yikes.
So, we will see what happens in the coming days. Overall I'm doing better having switched around the times that I take the Oxy to cover the middle of the day better etc.... It's all a learning process.
Thanks for asking
The following user gives a hug of support to Isotope: katlin09 (12-19-2010)
I'm hesitant to respond to this thread because I confess, I didn't read all of the posts. But I must say after being on percocet for almost 11 years I never once felt a "warm, cozy blanket of comfort." I've never experienced "euphoria" from my pain meds. Probably the only time I felt 'euphoric' was my first trip to Disneyland at age 7. Also, I do not understand how the original poster has reached tolerance level already. I have severe pain due to vasculitis (was on prednisone for years until it caused extremely high blood sugar & I lost vision in left eye, temporarily). I've been on percocet 10/650, 120 pills per month, since Sept. 2007. I will admit I am never pain-free, but the percocet does allow me to sleep & have some quality of life. I'm guessing I have not become tolerant of percocet after being prescribed the drug since May 2000. I do not have a PM, only a PCP who prescribes opiates reluctantly. So there is zero chance of me getting an increase in my pain meds any time soon, if ever.
Champagne for my real friends & real pain for my sham friends! (teehee)
I have never felt anything except pain releif from codeine or tramadol, and when i recieved morphine, i didnt find it plesant at all, actualy I disliked the feeling intensely, dopey and spaced out - I guess i am not one of those who is born to be an addict
The desire to take medicines is what seperates man from the lower animals - William Ostler
Unfortunately you said some of the "forbidden" words before anyone had a chance to worn you. Hardcore CP'ers just don't like to associate their pain control with those "euphoric, warm and fluffy" feelings,since those are generally what addicts are looking for. Don't worry about it, you didn't do anything wrong, you just were honest in how they made you feel.
The Following User Says Thank You to katlin09 For This Useful Post: Isotope (12-28-2010)
sorry i have not been able to read theu alot of the posts here lately. i usually hit here, then the mails sent for responses is usually all i can get to.
iso, for anyone that has to suffer severe abdominal pain that IS a constant like yours, you DO have my deepest sympathies. many times it simply cannot be knocked down or the meds as you mentioned can actually just make things ten times worse too. my abdominal is enlarging constantly from having a really sick and inherited kidney/liver disease that creates ungodly cysts inside and out and enlarges my organs seemingly by the day, as now my labs are also going downhill(PKD, no stopping it, no cure, just transplant). at times i feel like my whole body is being spilt in half from the insane pressure/compression thats just going to keep getting worse, since i am very small and also running out of flippin room in there now. this particular 'brand" of pain for me has been very hard to try and manage.
while i am really glad that the OC did give you the relief you have been seeking, at least that first month so at the very least here, you DO KNOW it IS a good med to stay on(it simply DID 'attach" to your pain at all?). the bigger thing here with ANY LA meds as the others have pointed out IS "titration". starting any LA usually also requires, mostly initially ongoing raises upwards til you can simply 'find' the best dose level for YOUR particular pain process too as you being these types of meds.
as jon pointed out and i was also feeling when i initially read your actual very low starting dose, only ten mgs seriously is SO very low dose going into your body at a time, i am kind of suprised it truely worked for you except that it was a "new" addition kind of thing? it just is NOT alot overall when your actual LAs are simply supposed to be ment to cover or take the edge of the main pain process so the BTs will not be needed or not needed as often just is more the gold standard docs try and reach with the LAs. this just kinda seems a wee bit backwards the way things are now.
when i started at my PM, it took going back and forth to my PM for like two months, and at times every two weeks while we just went up on the OC dosage and also trying other meds too. and also when i told my NP at the time that there was no way on gods earth that this stuff actually even could possibly last the stated '12 hour' crap, she just automatically popped me up to three times a day instead of the two i had been(that simply showed me that "they" WERE also very much aware of crappy non existant 12 run too)? and it made a HUGE difference in my overall 24/7 coverage. so there can be a couple of "possibles' for you here working with your doc to either try and see if this at least can be upped for the best 24/7 coverage with the three times a day you are on now. or trying to simply set the next dose up to at least twenty mgs and see how THAT goes too. and if you could get THAT at three times a day, it could be a very good dose and way to try and keep things on a more even keel too, AND less BT meds needed, thats a bonus there, trust me. and simply mentioning about that "big gap" you stated you feel to your PM as well, it may just make him raise you up TO that three times per day that seriously worked soo much better for me and still does. its kind of in what you say to them and HOW you tell them.
i just seriously think that since you just did even HAVE that real level of relief at the beginning here at all, that THIS particular LA is what you should try and stay on as long as possible too. simply actually finding what any pain process will even respond to as far as LAs or any other meds that give relief, it just makes good sense to try as much as possible to work within THAT particular med type in some way too. i just really do NOT think, like others here do too, that your "only ten mgs" is even close to enough the way everything is simply 'set up" at this point.
there are just many different things your PM CAN do here with regards to titration or just going the three times a day too just to even see if THAT would work all just with the OC? i DO wish you luck with this iso. i hope your PM will simply 'do" what he is supposed to do in getting YOU more comfortable with the pain levels you have. just even taking the edges off my many pain process is a huge thing for me and most of us here too, since "painfree' is NEVER going to happen in i know MY lifetime. BUT we DO deserve to have "tolerable/liveable", ya know? Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
The Following User Says Thank You to feelbad For This Useful Post: Isotope (12-28-2010)
I'm so sorry you are in such misery, and if I was your Doctor I would do everything in my power to make you comfortable! I think we all have good intentions here just trying to manage our many varieties of pain, all just looking to live a better life.
I've learned soooo much on this board. I didn't know that my dose was considered a fairly low dose. I didn't know that it would take a good amount of fiddling and titrating to find the right balance. I didn't know that after a few weeks the body learns and adapts and does a great job of neutralizing and metabolizing and trying to correct for the effects of Opiates. I didn't know that needing those adjustments doesn't necessarily mean that tolerance has been built, or is to blame. And on and on ......
It's all been a learning process and I'm still in the adjustment phase. You guys have been a great source of information, inspiration, and support!