Issues with taper

Hello Everyone.

I've recently been diagnosed with Crohn's after a month and a half in the hospital with Docs trying to figure out what was wrong. I'm currently on the prednisone taper. Started with 40mg and am stepping down 5mg a week. I'm at 30mg now and have started noticing blood when I have a bowel movement. Not a lot. Talked to the dr two days ago and he said it's okay and expect during a taper and as long as there isn't a lot of blood, fever or pain. I am starting Remicade in a few weeks once it gets approved by my insurance. I'm wondering if anyone else has experienced symptoms returning during a taper.

Some do notice once a taper is started symptoms will start to return, some GIs will have you go back up 5mg. A lot of time maintenance meds are started with pred so that it has time to build up for when you are tapering off the pred.

Thank you! That makes me feel better. If you don't mind me asking, why did you stop Remicade?

I'm not the one with CD, it is my son. He was dx'ed 2 years ago and due to severity went straight on remicade. It was truly night and day after the first loading dose. I mean I got my teenage kid back and he did well for a while.

We eventually had to up the dose, tweak the schedule and then add methotrexate. We learned a couple months ago that his disease had progressed so we are soon to be starting another med or discussing options.

Remicade works great for a lot of CDers!.

I'm sorry to hear that. I hope your son has better luck on a new med. Mine is considered severe as well. I only started getting sick in Feb and thought I had a stomach bug that turned into 103 degree fevers that landed me in the ER. This a scary roller coaster ride. I really hope the Remicade does the trick for me. I've been reading that a lot of people are able to achieve remission with it. I'm really praying I'll fall into that category as well.
I'll keep you and your son in my prayers!

Hi mmcnemar,

For what it's worth, it took me 11 years (!!) to get off prednisone. I am apparently exceptionally sensitive to it -- for every 1 mg of taper, I would get 2 weeks of withdrawal symptoms. If you need to go back up in dose or level off for a while, it's not the end of the world. Keep the lines of communication open with your medical team and taper at a rate that doesn't incapacitate you. Staying on prednisone a little longer can be annoying for its own reasons, but one thing to know is that all of the annoying prednisone side effects eventually do go away.

I'm doing well on Remicade, even after a decade.

Treating IBD especially new diagnoses can be such a trial and error effort. Steroids are meant to be a quick solution to get things under control while you and your doctor further determine the severity of your condition as well as what your long term solution is going to be.

That being said, for some people sometimes tapers do not work entirely the first time around and they have to be repeated. I personally was diagnosed with moderate to severe crohn's and have gone through this before as well. It's usually a sign that you need to be on steroids a bit longer and the doctor will usually either up the dose again and/or slow the taper down even longer to help get things under control while the two of you discuss what your next option will be. Steroids are never meant to be a long-term solution due to all of the side effects they can have on the body as well as certain potential long term issues such as bone loss (though there are some that take steroids long term due to their own special health circumstances and doctor preferences). If you wind up needing to be on steroids for long term, ask your doctor for a bone density test and to have your calcium levels checked to make sure you do not develop osteoperosis or osteoarthritis. I personally take calcium supplements with the permission of my doctor when I am on steroids along with potassium.

Personally, I think any time there is the appearance of blood it needs to be taken seriously by the patient and the treating doctor. A little bleeding is a sign that there is still activity, still a flare within the body. I'm glad you have discussed further options with your doctor and are waiting on Remicade. I hope it works out for you.

Just be sure to always keep open dialogue with your doctor about your symptoms and your concerns and if you ever feel uncertain about any of this don't be afraid to look into second opinions.

mmcnemar said:

I'm sorry to hear that. I hope your son has better luck on a new med. Mine is considered severe as well. I only started getting sick in Feb and thought I had a stomach bug that turned into 103 degree fevers that landed me in the ER. This a scary roller coaster ride. I really hope the Remicade does the trick for me. I've been reading that a lot of people are able to achieve remission with it. I'm really praying I'll fall into that category as well.
I'll keep you and your son in my prayers!

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It sounds like you had the similar experience as I did....I was diagnosed in January, had a very bad first flare in February and a rough 2 months with 2 long term hospital stays 3 weeks apart from each other. My doctors wouldn't allow me to get discharged from the hospital the second time until they had me set up and insurance approved to get biologics either before being discharged or the same day as my discharge. I started Remicade April 8th and I can definitely tell the difference!

I am also tapering off the Prednisone (15mg starting Wednesday) and I've noticed some mucus occasionally and very little blood, but it hasn't concerned me too much, because it's nothing like it used to be! I still have pain everyday in the left side of my abdomen, but it depends on the day as to how bad it is and how frequent it is.

I hope your insurance approves the Remicade treatment soon and that it works for you!

My daughter's first taper when she was on Remicade got her from 40 mg to 20mg (over weeks) before she started to show signs things were coming back. She went back up to 30 and stayed there for almost a year while we switched to other meds as Remicade stopped working for her before tapering to 20 for 3 months, then tapered completely off a month ago. This weekend she went right back to 40 mg as she is now having issues with her Humira/Methotrexate combo.

Prednisone has been a necessary evil in my kid's difficult case. Tapers are tough. Take it slow, and don't be discouraged if you have to stay on it longer than you want or have to go back on it. Just make a long term plan to get off it at some point.

You may want to look into doing a combo of Remicade+Imuran or Remicade+Methotrexate to avoid building up antibodies to Remicade. Antibodies to Remicade is the #1 reason people have to stop the med. It is worth the conversation with your doctor. Once you build up antibodies the other meds take longer to start working in many cases.

mmcnemar said:

Hello Everyone.

I've recently been diagnosed with Crohn's after a month and a half in the hospital with Docs trying to figure out what was wrong. I'm currently on the prednisone taper. Started with 40mg and am stepping down 5mg a week. I'm at 30mg now and have started noticing blood when I have a bowel movement. Not a lot. Talked to the dr two days ago and he said it's okay and expect during a taper and as long as there isn't a lot of blood, fever or pain. I am starting Remicade in a few weeks once it gets approved by my insurance. I'm wondering if anyone else has experienced symptoms returning during a taper.

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May I ask why Remicade rather than Humira? My GI is really pushing for Humira.

Also, being in NJ, have you thought of trying medicinal marijuana? FYI...I just went to the garden state dispensary on Wednesday and they are hoping to be approved to start producing cannabis oil (RSO) within a few months.

I'm on active duty in the military so no marijuana. I don't know why on end not the other. It was the first suggestion from my doctor because of the severity.

barelyalive said:

May I ask why Remicade rather than Humira? My GI is really pushing for Humira.

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Both of them are horrifically expensive in the US.

On goodrx.com:

• 1 kit (2 pens) of Humira 40mg/0.8ml $2,700
• 4 vials of Remicade 100mg $3,600

Since I don't know what a '30 day supply' would be, I just took the default, which I've found is usually pretty accurate.

Does anyone have a reliable way to get rough prices in other countries?

I'm lucky that my insurance covers Remicade 100%. I have no idea what I would do if I didn't have health insurance (growing up we couldn't afford it and didn't have it but luckily never needed it).
Both of those prices are outrageous.