Crohn's Disease Forum » General IBD Discussion » Don't know what to do


08-10-2018, 01:54 PM   #1
awoenker12
 
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Don't know what to do

Hey everyone, I am stuck and frustrated. I was officially diagnosed with Crohn's back in January, and I was put on 40mg or prednisone and 50mg of 6mp. My symptoms are 2-3 loose bowel movements per day, and occasional mild abdominal pain. The first time I tried tapering off the prednisone, I tapered 5mg every week. About a week after I was done tapering, my symptoms returned. So, my doctor put me back on 40mg of prednisone. After a few weeks, I felt good enough to taper again, so we did 5mg every week again. This time, when I got down to 15mg, my symptoms returned. My doctor then ordered a blood test and the results showed my sed rate was high. So, he put me back on 20mg of prednisone, and said that I should start remicade. I felt good for a week on 20mg, but my symptoms returned AGAIN.

I don't know what to do. I really have not felt myself these past few weeks, and school will be starting soon. Should I call my doctor and ask if I can go back up to 40mg of prednisone, or should I wait till my first remicade infusion? I am not sure how long it will be until my first infusion, and I want to feel better sooner rather than later. I know the prednisone has serious side effects, but it seems to be the only medication I respond to.

Lastly, I run cross country and I don't want to miss any of the season because of my Crohn's. I still feel good enough to run, but I feel as if I could run better if my Crohn's was under control.
08-10-2018, 06:05 PM   #2
Trysha
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It might be best to wait and see how you respond to Remicade....itís a very good treatment and could work very well for you.
Could you not ask someone to speed things up in this direction....
Why not ask your docs their opinion.
Ití could be better to get away from steroids where possible.
08-10-2018, 07:36 PM   #3
awoenker12
 
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Thank you for your reply! I went in yesterday to get my blood work done. My gi doctor said they have to do several tests before I start the remicade and that these tests take three business days to get the results. Plus, I am still in the process of finding a place where I can get my infusions.

My only concern is this. My gi doctor said once I have my first remicade infusion that he would do a very quick taper of the prednisone. I think he said I would taper 5mg every two days, which sounds way to fast to me.
08-10-2018, 09:15 PM   #4
Trysha
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Have you asked your doctor for a list of places where infusions are done....here in Ontario there are infusion clinics usually connected to the hospital.
It may be that your doctor feels the Remicade will take effect quickly and you wonít need the predisone.
Perhaps if you made a list of questions to ask the doctor it might relieve your mind a bit
We do face quite a lot of ordeals moving into the unknown depths of medicine and it would help if doctors were more thoughtful and forthcoming with explanations.
I would be quite shocked if you have to find an injection centre on your own.
Perhaps you could ask at the doctors office.
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08-11-2018, 09:28 AM   #5
awoenker12
 
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My doctor never gave me a list of where I could get my infusions, but I assume I can get them at the hospital where I have my gi appointments.
08-11-2018, 11:34 AM   #6
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I'd take the pain and lower prednisone as you have been taking it for a very long time. Remicade is great to keep people in remission in long term.
I'd focus on stopping prednisone even if it costs your running your activity.. prednisone is also very bad for body,muscles and joints so doing sport at high rate may be risky... maybe its better to wait for remicade to kick in before doing too much efforts.
08-11-2018, 11:56 AM   #7
awoenker12
 
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I'd focus on stopping prednisone even if it costs your running your activity..
Yeah, not exactly the answer that I was hoping for, but if it makes me feel better in the long run, I think it would totally be worth it.

I know that prednisone does a really good job of stopping my flares, but I don't know if the remicade will stop my flare like the prednisone does.
08-11-2018, 12:42 PM   #8
Guerrero
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Remicade has good results in healing the bowel without all the nasty guaranteed side effect of prednisone in the longer term.
08-11-2018, 12:54 PM   #9
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That sounds promising. Hopefully within the next week or two I will be starting my infusions.
08-11-2018, 09:41 PM   #10
Maya142
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awoenker12, I know this is not what you want to hear, but over the long-term prednisone can have serious side effects. Beyond the weight gain, puffy face, insomnia and the other short term side effect, it can lead to low bone density, diabetes, glaucoma, weaker muscles (less muscle mass) and an increased risk of infection. It can also cause adrenal insufficiency, which can be fatal.

I don't mean to scare you, just to educate you. My daughter is a college student like you, and we were not really told about all the long-term side effects of prednisone. I knew it could cause low bone density and weight gain, but didn't know anything about adrenal insufficiency. She was on and off prednisone for her arthritis for 6 years or so - but generally she was on much lower doses than you - 15 mg or under.

Suddenly, last year she developed Cushing's syndrome - rapid weight gain (25 lbs - a real shock to someone who had been very thin her whole life), permanent puffy face, dark purple stretch marks and then adrenal insufficiency. Essentially, her adrenal glands got so used to her getting cortisone from an outside source that they stopped producing cortisol.

Cortisol is essential for normal functioning and in stressful situations, your body produces more. Her body barely produced any at that point, which could lead to an adrenal crisis at any time, which can be fatal.

It has been over a year of almost no steroids and her adrenal glands are still recovering. We now have to be very careful around steroids - she can only be on them if absolutely necessary because every time she is on them, her adrenal glands stop working.

I would discuss your symptoms with your GI and see what he/she thinks about increasing Prednisone to 40 mg. Are your symptoms till just 2-3 BMs and some abdominal pain or have they gotten more severe? If you can hang on, I'd just wait till your Remicade infusion.

I would also caution you that your response to Remicade may be slower than you expect. There are some people who feel MUCH better after the first infusion and there are some that take 3-4 infusions (3-6 months). Some people even need a high dose or frequency of the infusions before they have a proper response. It really varies - depends on the person. Hopefully you will respond within a few days, but know that you may not and that is normal too.

Good luck!!
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08-12-2018, 10:25 AM   #11
awoenker12
 
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Maya142, thank you for the info. I knew prednisone had some really bad side effects, but I didn't realize about the adrenal insufficiency it can cause.

I was going to wait until my first remicade infusion, but my goodness yesterday was bad and so was this morning. Yesterday, I had 5 loose bowel movements. Luckily no abdominal pain. This morning, I lost count. I was literally on the toilet for an hour this morning. I think I went like 6 or 7 times. At this point, I think I am becoming unresponsive to the prednisone, so I think increasing the dose wouldn't matter.

I am losing hope. I know people keep reassuring me that remicade is a really good drug to treat Crohn's, but these last two days have me feeling like nothing is going to work.
08-12-2018, 12:33 PM   #12
Maya142
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Prednisone at a higher dose may still help you - you could discuss it with your GI. My daughter has had times like you are going through now - where she is up all night and goes to the bathroom 7-8 times. There are times that were worse - where she was having 20 BMs per day!

But right now, she on Cimzia (another anti-TNF) and her scopes looked GREAT! She feels good too - no more abdominal pain.

So hang in there. Remicade really does work very well for people. For some kids, their parents say they see a difference from the first infusion. It really can be a "magic" drug, as my daughter called it.
08-12-2018, 05:41 PM   #13
Guerrero
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I agree with maya. You could have a very positive effect from infliximab just after your first infusion.
08-12-2018, 06:00 PM   #14
awoenker12
 
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I will try to hang in there. I feel better this afternoon and a little relieved.

The only problem with waiting for the remicade is that I still don't know when I am going to have my first infusion. I am still looking for a place to get my infusions. I will probably end up going to the hospital where I have my gi appointments, but the problem is that is an hour drive from my house.

Plus I start school in the next week, and I don't want to be feeling like crap.

I might have to stop running until my first infusion. That is when it really started to get bad. I guess I could give that a try.
08-12-2018, 06:18 PM   #15
my little penguin
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Most have to get infusions at the hospital
If it gets you in sooner than great
You can. Always move the infusions to a closer place once you are feeling better
Some still need pred as a bridge therapy until remicade fully kicks in 6-8 weeks

Good luck
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08-13-2018, 10:54 AM   #16
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Finally some good news. Got a call from my gi this morning saying that I can get my first remicade infusion this Saturday at the hospital.

I also got the results from my blood work from last week. They said my sed rate dropped slightly which I found hard to believe but they also said something else was high. I am not sure what it was.

They said they will give me a call back later today about what they will do with my prednisone dosage. They are still debating if they should increase it or not.

Lastly, I only had two loose stools this morning and feeling a bit better. At least I am finally getting somewhere.
08-13-2018, 01:44 PM   #17
awoenker12
 
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Got another call from my gi. They want to start tapering me on the prednisone 10mg starting tomorrow! These leaves me feeling very frustrated. I know I am getting my first infusion this Saturday, but if it takes time for the remicade to kick in, why don't they leave me at 20mg for another week then start tapering?

I am prepared for my symptoms to get bad these next few days.
08-16-2018, 02:51 AM   #18
Guerrero
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As remicade is an antitnf it will start working from day 1 of the infusion. Takes a while to fully work, but the first infusion could make you feel better.
08-16-2018, 03:29 PM   #19
Maya142
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Hang in there - if the taper does not go well, just let your GI know. Generally they wait till you are getting better on Remicade before tapering, but remember that your GI has to weigh the risks vs. benefits of being on Prednisone. So if you've been on Pred a lot or for a long time, they may want to taper more quickly.

And it is definitely true that you may see an improvement on day 1, even if Remicade takes longer to fully kick in. My daughter took till the second infusion before she saw an improvement (so only 2 weeks, since the loading doses are at 0,2 and 6 weeks) though it took longer to get a full response.
08-17-2018, 04:30 PM   #20
Jasonaldean
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Get well soon.
08-18-2018, 08:21 PM   #21
awoenker12
 
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Thanks Jasonaldean!

Today, I got my first remicade infusion. Everything went very well. School started a few days ago, so I was able to get my homework done during my infusion which was nice.

As far as my symptoms go, they have gotten worse. I am now having 3-4 loose bowel movements per day. Hopefully that will get better since I just got my first infusion.

Again, I want to thank all you guys. You all have helped reassure me a bit. It finally looks like better times are ahead.
08-19-2018, 10:39 AM   #22
Bufford
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Be patient with the Remicade, there might be a bump in the road so to speak when going off the Pred and starting the Remi. It wouldn't hurt to cut down on physical exercise such as running when your symptoms are on the rise. All that shaking from the running maybe causing irritation to the bowel. You may want to reduce the distances you run, or try walking instead. I find walking very beneficial, to maintaining general health.
08-23-2018, 08:18 PM   #23
awoenker12
 
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Guys, I had my first infusion 5 days ago, and today I have no symptoms whatsoever! I feel awesome! I have one normal bowel movement per day again, with no blood. Also, even better, I am off the prednisone finally! And, my running seems better. Don't know if that is from the medication, or me just feeling good but I like it!
08-24-2018, 01:56 AM   #24
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Great news!
09-16-2018, 02:32 PM   #25
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This is my one month update. I am doing awesome! No symptoms at all in the last month, and I feel a lot better since my first infusion. My cross country running is also been very good. In fact, I had a meet yesterday and I ran a personal record. Thank you guys for all your support!
09-16-2018, 03:25 PM   #26
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That's great!
09-16-2018, 10:39 PM   #27
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Thank you so much for sharing your Remicade journey- I am right behind you. I started on 30mg prednisone a day, now on 15mg a day and 100mg azathioprine. My first Remicade infusion is Sept 25 and after that we are backing off on the prednisone 5mg at a time til I am off. Other than the Crohn's, I have always been healthy and I am afraid of being on all these drugs and what they might do to me. I am so glad to hear you are doing well. Your story helps me to trust my GI doc and follow through with the plan- thank you!
09-17-2018, 05:30 PM   #28
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NuttyGuts, I am glad I could help. This truly is a wonder drug. Plus, it is good that you are on azathioprine at the same time since it prevents antibodies forming to the remicade. The first infusion is always the longest. I was a little nervous at first, but once they got the IV in me, it was a piece of cake. Good luck on your first infusion, and I hope it works wonders for you!
09-17-2018, 06:20 PM   #29
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So what is your game plan from now on? How often do you get Remicade infusions for maintenance? Do you have to stay on it the rest of your life? And do you have to get blood tests- if so, how often? I have been so nervous about the first infusion that I haven't really thought much ahead after that!
09-17-2018, 07:41 PM   #30
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My game plan is to stay on remicade as long as it keeps me in remission. You get your first remicade infusion, then your next one in two weeks, then four weeks (these are your loading doses), then every eight weeks for maintenance. As far as I know, you most likely won't be on it for the rest of your life- you are on it as long as it is treating your disease and keeping it under control which could be for years. As for bloodwork, your doctor may monitor it once every couple of weeks at first, then probably once every three to six months. Don't be nervous. Just make sure you got something to keep you occupied such as reading a book since your first infusion may take up to three hours.
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