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Am I being fast tracked through medication progression? Advice Pls!

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Ulcerative Colitis
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Posted 4/8/2011 12:56 AM (GMT 0)
I'm new to the forum and just looking for some opinions other than my GI's, because I feel she is moving me along treatment options WAY too quickly without giving each stage a fair chance to work.

I was diagnosed with UC in the summer of 2008 when I had my initial flare.  It was about 5 weeks and rather rough as my family Dr. and then ultimately my GI determined what I had.  I was able to stop this flare by starting Asacol 800 x6 per day, Salofalk enema each evening and a daily vegetable juice drink consisting of brocolli, cauliflower, spinach, cabbage and carrots.

I was able to remain in remission until the middle of this past Feb just taking the Asacol (same dosage) and the Salofalk every now and then if I felt a blip. This was the first "level" of treatment offered to me and it worked very well.

In Feb a series of stressors arose (applying for competitive jobs out of graduate school, long term relationship ending, studying for a particularly stressful exam period) and this was combined with myself having let my guard down/being stupid: working out too vigourously, consuming alcohol, not watching my diet closely enough.  I believe these things lead to my current flare.

A week ago I was hospitalizd with high inflamatory markers and 40 lbs weight loss.  They began me on IV feeding and hydration and eventually IV prednisone 30x2 a day.  The IV steroid slowed my BM's to 2-4 semi-formed.  Then I began the tablet version once released from hospital and BM's increased a bit to 6ish a day and looser.

My GI told me today that because of this 2 day blip the pred is not going to work for me and scheduled me to have a Remicade infusion tomorrow.  How can I have gone from nearly 3 years of successful maintenance on Asacol alone to being fast tracked onto Remicade and Imuran being discarded as an option in a 2 week period of time?

Shouldn't I have been advised to try my enema's and Asacol again and continue the pred a bit longer before it being declared completely ineffective? Dr's can be hard to question but this feels way too fast.

Any thoughts? Thanks in advance!

Posted 4/8/2011 1:21 AM (GMT 0)
Just my opinion, but I would try to stay away from Renicade and Imuran until all other less potent meds have been explored.
I would definately ask for some rectals. Rowasa enemas or suppositories. There are several.
Best of luck.
Donna
Posted 4/8/2011 1:23 AM (GMT 0)
Hi Stevie -

I do think the doctor is moving quick but some GIs are using a top down approach these days because they believe Remicade is a better, more longterm option than Imuran. I personally opted for 6mp (similar to imuran as you probably know). My GI did offer Remicade or Humira but I told her my preference would be for pills and I've been doing well after a few months of experimentation with the dose of 6mp.

Perhaps the GI thinks you will relapse too badly to wait for 6mp or imuran to get into your body? It can take up to 3 months to see effects from imuran. 40lbs weight loss is not a small amount, and you're not improving on 60mg of prednisone? You've been on prednisone for about a week? It can take longer than that to have full benefits.

You have to say what you think, don't let the doctor push you around. If you're not ready to move on to the next thing tell them you would like to give prednisone another week before making a decision about where you want to go. Or request steroid enemas. That's what I did when I relapsed from pred, I told my GI I'd like to try Lialda & Colazal and she was open to it. I tried both. I even tried antibiotics. You should have a say in your treatment. If you don't like the way this GI works, get a second opinion. I hope you're feeling better soon.

Posted 4/8/2011 12:16 PM (GMT 0)
I do think the doctor is moving quick but some GIs are using a top down approach these days because they believe Remicade is a better, more longterm option than Imuran

Agree. Your GI is using current protocol. Is he/she right? No way to know for your particular case. You are one of hundreds your GI treats so he/she has some experience and you are one of one to yourself with a very personal stake in this.

I also failed with Asacol (unlike your success for 3 years) and several other meds and was told that the biologics (Remicade, Humira) were the next step. Which I didn't take. However I have never been hospitalized as you were and never lost 40 lbs. That is a level up in seriousness.
You can certainly doctor-shop and find one that will agree with your plan to avoid Remicade/Imuran. No one knows what the right answer is for each person.

In every event that I am unsure which decision to make I ask myself on the scarier one "What's the worst that could happen" and decide whether I could handle that.
BTW I stayed with my current doc that said Remicade was next, she didn't divorce me.

No one here can answer your question of what is the right drug to take. Some have had great success with Remicade and Imuran. Some had bad side effects or no success. And some chose not to go there.

But since diet helped you before perhaps once you get out of this very bad flare you can try getting back on that wagon.
Posted 4/8/2011 1:25 PM (GMT 0)
Your doctor may want to fast track you to Remicade but keep in mind there are many other doctors who would think twice before fast tracking Remicade for themselves if they were in your shoes.
Posted 4/8/2011 1:29 PM (GMT 0)

I would look for altrnative medical approaches. I started corrdinating with an intergrative medical doctor. He thinks more out of the box, uses more differnt types of test such as food sensitivty and your adrenal production level whihc effects your immune system to make conclusions.

I also still see my GI. At least I found an open minded GI who is ok with the other doctor's recommendations. My GI was not open to prescribing Low Dose Naltrexone but is ok that it was prescribed by my other doctor.

If I had a choice in steriods, I would avoid predisone.  It's difficult to ween off.  I tried hydrocortisone enemas 100mg but my flare got worst. I think I was over dosed.  If you try the enemas ask for the lowest dose first. I think it comes in 50mg. Another good option is Budesonine enemas (avail in Canada or compounding pharm in US). It's less medication and is easly process through the liver so there's less side effects.  You got to research you're treatment options...there are alot out there it's just trying to find the magic bullet that works for you.

Remicade...I don't like at all. You can only try it once. Once you stop you can't go back to it, plus it does a number on your limpnotes I'm told.

You can also try locating a suport group for UC. I found a local one through CCFA.  It's good to talk face-to-face with real people and they may be able to help you located a better doctor in the area.  I was told so far the best place would be Mayo Clinic in Michican. They have a team of doctors that will go over your history.  Never hurts getting a second opinion!

Posted 4/8/2011 1:39 PM (GMT 0)
You had a significant severe flare that did not respond well to prednisone. Your doctor is probably bypassing imuran or 6MP because both of those drugs have a 3 to 6 month period before they start working. Within the waiting period you would have to remain on prednisone (not a good option for you). So, I can understand why he/she has shot for the higher mark. The goal is to get you in remission so you don't become a surgery candidate. My last flare was as severe as yours, with the weight loss and 20-40 bowel movements per day. I languished for 2 years like that and wouldn't recommend it. As baffling as it seems to you, UC is unpredictable. I had a 10 year remission followed by the flare that resulted in surgery. I know other who have been in remission for 25 years and flared so badly they had surgery. And then there are also many who only have UC for days or weeks and end up in surgery. There is no way to predict what will happen to you next but the goal is to reduce inflammation quickly and get you in remission.

Sue
Posted 4/8/2011 7:46 PM (GMT 0)
I never did Imuran or 6MP. I was tried on Remicade after Asacol and Prednisone didn't work. My doctor, like Sue said, told me other meds would take too long to work and I was too sick to let it go that long
Posted 4/8/2011 8:06 PM (GMT 0)
The current thinking seems to be that Remicade is more effective and possibly safer statistically than Imuran and 6-MP. It targets a specific factor in the immune system rather than dampering down the whole immune system. Also, the statistics for development of lymphomas are much higher with Imuran than with Remi. That may change as time goes on, but it also may not. Remi has actually been in use for quite a long time for rheumatoid arthritis and Crohn's.

I know I flared outrageously (20-25 stools a day with bleeding and pain) for five years before starting Remicade. I would rather have died than to continue "living" that way, so it was an easy decision for me.
Posted 4/11/2011 12:07 AM (GMT 0)
Thank you everyone for your thoughtful responses. I know that I am unable to post on here and be given my magic solution, despite the fact that there are so many very experienced and knowledgable fellow UC patients offering genuine opinions.

I have been fortunate in the sense that before I lost the 30-40lbs I was carrying a fairly significant amount of extra muscle bulk that my body didn't really need, but since the weight loss has become so much, I know that at this point I don't have any more to give without worry. I recognize the desperate nature of my situation, but wonder what criteria to use to determine absolute critical condition, as I would prefer to make informed choices rather than sudden ones, a luxury I know I may not have.

I've just been considering my future more than anything else. I've been weighing the importance of stopping this flare immediately with considering what degree and type of remission I may hope for in the future. Some of the stories I've read about Remicade really frighten me. The whole diminishing results and shorter infusion lasting periods has me picturing 4-6 week stressful periods of counting down until things act up again. That really doesn't sound like much of a life at all compared to the 3 years of complete remission I had last time with diet.

So that's my dilemma: If I go back to the hospital I may be able to try the IV prednisone again which was working nicely, and be hydrated and fed by IV also but my GI's intentions and goals are to have me begin Remicade. I'm currently at home under close watch of my parents using ensure and boost shakes, pedialyte, and continuing my vegetable juicing twice a day which stopped my last flare. I wish more than anything to get remission with the juice/diet because that quality of remission was amazing. I just need to make sure that I'm not in critical condition.

I have a naturopath Dr a friend has recommended who might have some alternate ideas who I can see tomorrow. I also have an appointment with my GI tomorrow, who will likely try to schedule a Remicade infusion. I am so confused right now about what is best for me. Thank you for all your opinions and suggestions, knowing others have experienced this struggle makes it easier.
Posted 4/11/2011 12:56 AM (GMT 0)
UC Stevie, that vegetable juice regime would cause diarrhea, particularly the cabbage. I would steam spinach, eat sweet potato. as options.
Posted 4/11/2011 4:39 PM (GMT 0)
Well, I'll chime in here....I was on Remi for 5 1/2 years; my doc chose the fast track for me because I was the same; about 25 bm's a day and I wanted my life back. He decided to start with the big guns first to get the colon healed, and then work my way down. I chose to take it and it was the best decision for me. I'm now on maintenance meds (6 Asacol a day) and my colon after two cscopes (a year apart) shows the colon clear and free of polyps or ulcers. This is my story though, and everyone needs to make their own decision. Good luck!

Posted 4/11/2011 7:24 PM (GMT 0)
sometimes pred works quick for me sometimes it doesn't. Try the steriod enema's for a couple of weeks first!!
Posted 4/12/2011 2:55 AM (GMT 0)
Thanks for the responses everyone.

I had an appointment with my GI today and I'm scheduled to be re-admitted to one of the best hospitals in western Canada tomorrow for IV hydration, feeding and monitoring. I'm very likely going on the Remicade this week after continued lack of response to 40 of oral pred a day. My GI explained to me that at this point of a lengthy, severe flare the priority should be to try the drug to reduce the inflammation ASAP, and figure out future maintenance options at a later point. She explained the delayed onset of Imuran and 6MP and said those aren't fast enough acting options for my situation.

I did a lot of thinking about the quality and length of remission Remicade may provide me with and, after reading the experiences of many posters, I'm not thrilled or the most optimistic but after looking down at the scale and seeing the total weight loss now at 50ish lbs, I've become just plain scared and there comes a time to just try pulling an ejection chute I guess. No time left at the moment for seeking natural remedies as I had desperately hoped for. I just pray that I have a positive response like some have shared.

Thanks again for the support everyone, this forum is a special place for being able to feel supported talking about this serious illness. I will update the thread with the further treatments I receive and how I respond to them.
Posted 4/12/2011 12:10 PM (GMT 0)
Best wishes for your recovery. It sounds like you have very good medical support helping you get through your crisis. Yes please report back, it will helps others as they have helped you.
Posted 4/12/2011 1:23 PM (GMT 0)
let us know how the remicade goes, I will be joining you very soon!
Posted 4/12/2011 8:22 PM (GMT 0)
Remicade is not as severe as Imuran/6MP. 6MP is definitely the last option. In your case you are very correct - I would try tapering off Prednisone and using Azacol/Lialda before thinking about Remicade or Imuran.
Posted 4/12/2011 8:28 PM (GMT 0)
Also: you might want to look into to seeing a Dr. that specializes in UC. As opposed to just a GI doctor. That ended up being a good decision for me. Even though he's an hour and fifteen minute drive away.
Posted 4/21/2011 6:21 PM (GMT 0)
Just wanted to update this thread on my response to my first loading Remicade infusion.

I had the infusion a week ago Thursday night, during my second week and a half long stay at the hospital in a month. Going in I was having 8-10 loose BM's a day, had moderate to severe cramping and was eating a soft/liquid diet very gingerly.

I had a 400 dosage and the effects began for me immediately. In the middle of the night I woke to have a BM and it felt different. I wondered if it would work for me or not and didn't want to jinx it, but the immediacy was VERY surprising. I still can't get over how much of a change only a week has seen.

A week later, I am selectively eating solid foods, have a good daily intake of calories, very rare gentle cramps (1-3 a day vs constant before) have good hydration and the overall general comfort is amazing. I've been able to visit with friends, begin walking regularly outdoors again, even went to the driving range and comfortably hit my clubs yesterday (50lbs muscle loss changes a swing a lot!)

My Dr. described it is as a fire extinguisher putting out a flame when it works it's best and this is what has happened for me luckily, hoping to the heavens that it lasts!
Posted 4/21/2011 6:26 PM (GMT 0)
Hey Stevie, it worked the same way for me. I woke up the next morning after my infusion, had one long solid bm and haven't looked back. Glad to hear it's working for you, and that you are feeling better. Take care and keep us updated!

Posted 4/21/2011 6:39 PM (GMT 0)

Lonie said...
Hey Stevie, it worked the same way for me. I woke up the next morning after my infusion, had one long solid bm and haven't looked back. Glad to hear it's working for you, and that you are feeling better. Take care and keep us updated!


Did you find the immediate response to be as astonishing as I did?  I mean it's as if I feel like I should be nervous and on pins and needles because it's working too well, way too well.  Not complaining though, I'd happily take this progress any day!

Thanks for the support, glad you haven't had look back, and will update further.

Posted 4/21/2011 6:54 PM (GMT 0)
Yes, I did find it totally astonishing; to the point that I couldn't believe I didn't have the urgency and didn't have to look for a bathroom. I'll never forget the next day; I picked my Mom up to go shopping and couldn't believe I had the energy to do it plus I didn't look for a bathroom all day. It is amazing!

Posted 4/21/2011 7:41 PM (GMT 0)
TThank you for the update Stevie. I am happy to hear you're doing so well in such a short time :)
Posted 4/21/2011 7:57 PM (GMT 0)
hey stevie and lonie......thanks for the positive story.......sounds like your both doing much better.....im going in for the Remicade infusions next week for the first time and hoping for success...very positive!!!!!!!!!
Posted 4/21/2011 8:00 PM (GMT 0)
Hey pain, great news! Good luck to you and let us know how the infusion went!

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