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awoenker12

awoenker12

Joined
Jun 3, 2018
Messages
182
Location
Chicago, Illinois
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.:ymad:

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.
 
It might be best to wait and see how you respond to Remicade....it’s 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.
It’ could be better to get away from steroids where possible.
 
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.
 
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 won’t 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.
Hugs
Trysha
 
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.
 
Guerrero said:
I'd focus on stopping prednisone even if it costs your running your activity..
Click to expand...

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.
 
Remicade has good results in healing the bowel without all the nasty guaranteed side effect of prednisone in the longer term.
 
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!!
 
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.
 
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.
 
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.
 
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
 
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.
 
Got another call from my gi. They want to start tapering me on the prednisone 10mg starting tomorrow! :ywow: 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.:yrolleyes:
 
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.
 
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.
 
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.
 
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.
 
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!
 
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!
 
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!
 
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!
 
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!
 
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.
 
Hey everyone, I had my 4th remicade infusion today, and everything is still going perfectly. No symptoms, normal stools. The one thing I did learn is to be hydrated for my infusions. They had to poke me four times in order to get the IV in me.
As for my fitness and cross country season, I had one of the best seasons ever. I took off 3:40 on my 5k time from last year. I swear, if it wasn't for remicade, I would not have ran that well.
 
That is unfortunately often the case if you are dehydrated. The more hydrated you are, the easier it is to get an IV in. Over time you will also learn where your "good" veins are for IVs.

Scar tissue can form if you use the same vein again and again, so try to make sure the nurses rotate. My daughter has had countless blood draws and IVs over the use and 10 years later, we are dealing with scar tissue and "bad" veins - ones you can't draw from or ones that roll etc.
 
Hey, awoenker12!
Good to hear from you again and congratulations on beating your 5K time! I have also come to realize how much my body depends on the Remicade to stay in remission. I got really thirsty during my last infusion- the nurse refilled my water bottle three times during the last two hours. Still scheduled for surgery January 8 and hoping the Remicade will keep me going until then. I have to be really really careful of what and how I eat because of the stricture. But I made it through Thanksgiving and even drank wine! Woohoo!
 
Maya142, yes, I have learned that the veins in my right arm are the "good" veins and the ones in my left arm are "bad" veins according to what the nurse said. I will make sure they rotate arms.

NuttyGutts, glad to hear from you too! Glad you were able to make it through Thanksgiving. I always tend to eat too much and feel really stuffed afterward, but luckily this year I didn't. Good luck with your surgery, and I wish you good health.
 
Hey everyone, just came to update on everything

5 months in and everything is still perfect. Had my 5th Remicade infusion on January 19. I got my routine blood work done on Monday. Doctor called and said my labs looked great. He wants me to discontinue the 6mp which makes me worried about the formation of antibodies to the Remicade.
 
Hi All,
Update time here also. I never made it to the January 8 surgery- the stricture closed up so tight that I couldn't eat and was losing weight fast. We rescheduled for Dec 18, and all went well. They cut out about 10 inches of terminal ileum, the appendix, the ileocecal valve, and the first part of the cecum, and then sewed the remaining ileum to the remaining cecum. No abscesses or fistulas. I was in the hospital four days,the nurses were wonderful, and sent home with Tramadol for pain. And my hubby had to give me shots in the belly every day of Lovenox for 26 days (anti-coagulant.). So far recuperation is going okay, just wish my energy would come back. My guts definitely feel "rearranged" and my belly looks different. I am back on daily azathioprine, and will resume Remicade infusions soon. It's so good to be able to eat again with no pain! Both the GI doc and surgeon don't think I should go on the SCD or low dose naltrexone for at least a year. I worry about staying on drugs and would really love to control the Crohn's with diet, but it's a difficult diet to maintain and not much clinical proof to show it works. So for now, I guess I will follow their advice. Remicade infusion #4 coming soon...
 
Hey there, awoenker12!
Glad to know you are doing well and that the Remicade is still keeping you in remission! Do you know anything about Inflectra? I am going to ask on the general IBD discussion about it.
 
Inflectra is a biosimilar to Remicade. It is suppose to be cheaper than Remicade.

From what I know people who switch from Remicade to Inflectra have a 50/50 shot of their symptoms coming back. People who start on a biosimilar are less likely to flare.
 
Hmmm- maybe a reason not to change? I suppose I will get Remicade this time for the 4th infusion, but by the time the 5th one is due, I guess the Inflectra will be on the insurance company's formulary, and I suspect I will be moved over to it. Let us know if they do the same to/for you, awoenker12...
 
Remicade infusion number six was today. Still working great for me. The only problem is the darn nurses not being able to get the IV in my veins. And I was definitely not dehydrated. I drank three to four full glasses this morning and the night before. The one nurse poked me 3 times and gave up and called in another nurse who said if she doesn't get it in my vein, she would fire herself, lol! :rof: Luckily this nurse was able to get it in properly.
 
Hey, Awoenker12, good to hear you are still doing well on the Remicade! They did not switch me over to the Inflectra, and my infusions #5 is due in April. Still taking 50mg azathioprine every day, also, and feeling pretty good. Since my surgery in December, I have mostly healed up, but now I feel funny, like things are all rearranged inside of me, which really they are. I have had to buy new pants, and can't tuck in sweaters that I used to. Very weird. But overall, I am feeling well and eating well, and glad to hear that you are, too! :dusty:
 
NuttyGuts, glad to hear from you. Also glad that you are doing well. I think the biggest thing about this disease is that if you feel good enough to do the things you like and you are happy, that is all that really matters.
 
Will remember to drink lots of water and coconut water before the next infusion, thanks for the reminder!:drink:
 

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