Prednisone while starting Humira?

[suschex]

I was wondering what dose of Prednisone or other steroid you were on when you started Humira? How long did you continue the steroids after starting the Humira?

 

[Gunny]

Reply

Hi,
I had been on 40mg of prednisone daily for seven months. I had failed at remicaide after my seceond resection revealed positive surgical margins. Once I had been on Humira for the initial 3 doses, I started tappering off prednisone, and have now been totally off it for 3 months now, thank goodness. If and when you start showing improvements while on Humira, they will start tappering you off of your prednisone should your situation allow it. We are all really different and therefore what works for me may be quite different for you. I hope it starts working for you and you can eventually get off of the prednisone. For me, that was a huge step to finally be off the prednisone. I can actually sleep better now that I am off prednisone. I realize there may come a day when I have to go back on it, but I am enjoying not being on it right now. Hope that answers your question. Good luck!

Gunny

 

[spcwife23]

i was tapering off of prednisone before humira but couldnt get off of humira at 5mg, soon as i used humira the next week i was off of prednisone

 

[brianncc]

I was on 40mg of pred when I started Remicade. I am getting off it now. Just had my second infusion. I have been on pred for 3 months straight. I feel great, which pred never did. I hate pred with a passion!

 

[Gunny]

dose of prednisone

I was on 40mg of prednisone when I started Humira and after the 3 loading doses of Humira I started tappering off prednisone decreasing it 5mg every 5 days until I was completely off of it. So far, I have not had to go back on prednisone yet and hopefully won't.

 

[suschex]

Thanks All!

I had been on 40mg of Pred. since Oct. 10, 2011 (day of Chron's diagnosis) it didn't seem to help much but then when I started Humira (Nov. 22, 2011) I tappered all the way off the pred in 3 weeks. That is when I realized the pred had been helping some...not a too much but enough to keep me up and gong a little bit. So, I started back on just 20mg a few days ago and it is helping a bit again. The worst part is that 7 shots into Humira I have had no change at all in my condition. Is the Humira not going to work? My GI said to wait until 12 weeks in and then we will do another colonoscopy. Honestly, this wait and see is just not fun plus then what???...change to Remicade and give it the same 12 weeks and after that try to get in a trial and then finally just remove my colon to feel better....I just feel so frustrated and out of places to get information on what to expect or what is normal...

I'm so sorry to vent, I just feel so frustrated now.....

Suzanne

 

[brianncc]

I'm sorry Suzanne. It is tough to get good advice because everyone is so different. Just keep some faith. It's hard not to get down. Remicade has worked great for me so far. I think the combo of azamiaprine and remicade are getting it done. I was crazy sad but then it got better.

 

[beth]

I've never been on pred, let alone whilst on Humira. If you need it and Humira I'd ask whether any tests have been done to find out exactly where and what kind of inflammation you have, surgery might be a quick fix. Stay on the Humira to keep anything new from occuring.

Sounds like you need to 'hang tough' as your GI has said. I can understand the frustration tho!

 

[Gunny]

Frustration should be part of the medical definition of Crohn's Disease!!! I think all of us at one point or another have or continue to feel frustration with this "crappy" (lol) disease. Like Brian so correctly stated, it's tough to get advice, we all have the disease, but we all react so differently to the treatments out there. There is no magic treatment for this. It is one giant puzzle for each individual, a puzzle that their Physicians need to figure out with your help. Only you can show them the big picture while they put the pieces together. That won't happen quickly I can assure you. Just try and hang in there. I feel confident saying most all of us have run out of patients at one point or another. It truly is no fun to deal with this disease. Sometimes the best healing is venting on this forum, so you should feel better already, right? Just kidding. Hang in there, we are all in this together! Give the Humira a little more time. If you smoke, stop immediatley as it causes incredible flares. If you use black pepper, stop. Don't eat spicy foods. Try and stay away from deep fried foods. Foods high in fat, such as candy, ice cream, whole milk and such will mess you up too. It's trial and error. I kept a food diary for quite awhile to help me figure out what foods were messing me up. Eventually I would see patterns of what made my Crohn's worse. It's a start, especially since you say you were just recently diagnosed. I wished someone had told me about these dietary issues when I first got diagnosed. It would have saved me a lot of unecessary trouble.
Enough babbling for now. I hope some of this helps

 

[suschex]

This forum has been such an amazing place for support! I have now been back on 20mg of Pred for a week now and although it has it's negatives and isn't the long term answer, it is allowing me to be involved in life again as a Human-being, Wife and Mom. In fact, I am going to give a short, slow run a go today. Being able to run again would help so much with the mental part of this thing! 12 weeks ago I lefft the hospital after my colonoscopy with a "Name" for what was making me ill and the idea that I would hop on Pred., move on to maint. drug and get back to life as it had been...I am now dealing with the reality of how getting back to 'life as it had been' really happens. I will keep my chin up and lean on others for support when I can't!

 

[brianncc]

I'm glad you are able to give a run a try. Just remember to go slow and take it easy. I love working out. Fitness and health were a huge part of my life, and still are, so it was frustrating when those things were being taken from me. You will get better and get back to everything you want to do. It just takes time. Good luck! I hope the humara works. Are you taking Imuran or azamapthrine too? Sorry for not spelling meds right, I should really memorize how to spell the meds I take. Haha!

 

[brianncc]

BTW, if you do change to Remicade they say it takes 12 weeks or a few infusions, but mine worked in a week. I know a lot of people are the same as I was. Good luck!

 

[suschex]

I'm glad you are able to give a run a try. Just remember to go slow and take it easy. I love working out. Fitness and health were a huge part of my life, and still are, so it was frustrating when those things were being taken from me. You will get better and get back to everything you want to do. It just takes time. Good luck! I hope the humara works. Are you taking Imuran or azamapthrine too? Sorry for not spelling meds right, I should really memorize how to spell the meds I take. Haha!

Well, the run turned out to be just a very slow walk but it was for 37 minutes and with my dog (it was harder for her since she has always been my marathon training partner and a walk just didn't do it for her...she will wait for me though...a good partner for certain!) and my sone who is almost 7. It was nice to hear my son recount watching me run and how he felt about my distance running and about my long illness. I was never a fast runner (5:18:00 PR) but he understood the meaning of the running and was telling me how it was the same as the struggle I am in now...kids can be so much smarter than their parents sometimes :rof:

Anyway, I will take my 8th Humira injection tomorrow and hope it works this time. I am only on the Humira and 20mg of Pred. Right now. Next, I will try Imuran and Remicade for 12 weeks.

I am so glad you have had success with the meds!!! :dance:

 

[brianncc]

Thanks. I honestly feel bad sometimes telling people that the meds are helping me so much, because I know others struggle to find something that helps. So I don't want them to get frustrated and feel mad about it. I hate putting all this crap in my body, but am glad it helps.

It seems that Imuran and Remicade success rates seem to be the best out there from the research I have read. I am a avid triathlete, well I race maybe 4/5 olympic distance events a year, so I understand wanting to get back at it. I haven't done any real miles yet, maybe 15 on the bike and 3 mile runs, but I have been able to get back to the gym four days a week and workout. It is winter in Chicago so it isn't killing me. Keep me updated with how things are. Do you have stomach cramps, lots of bathroom breaks, blood, or nighttime bathroom breaks (the worst)? I am still on pred, tapering at 25mg right now. I tried pred, Imuran, asacol after I left the hospital and was right back three weeks later. But like I said after I went on Remicade I have feeling good. I had terrible cramps, blood, nighttime breaks, 20-25 total trips a day for 7 or 8 weeks, and now 2 breaks a day (solid), no blood, no cramps, and eating normal. So it can get better. Keep me posted! Good luck!

 

[suschex]

Thanks. I honestly feel bad sometimes telling people that the meds are helping me so much, because I know others struggle to find something that helps. So I don't want them to get frustrated and feel mad about it. I hate putting all this crap in my body, but am glad it helps.

It seems that Imuran and Remicade success rates seem to be the best out there from the research I have read. I am a avid triathlete, well I race maybe 4/5 olympic distance events a year, so I understand wanting to get back at it. I haven't done any real miles yet, maybe 15 on the bike and 3 mile runs, but I have been able to get back to the gym four days a week and workout. It is winter in Chicago so it isn't killing me. Keep me updated with how things are. Do you have stomach cramps, lots of bathroom breaks, blood, or nighttime bathroom breaks (the worst)? I am still on pred, tapering at 25mg right now. I tried pred, Imuran, asacol after I left the hospital and was right back three weeks later. But like I said after I went on Remicade I have feeling good. I had terrible cramps, blood, nighttime breaks, 20-25 total trips a day for 7 or 8 weeks, and now 2 breaks a day (solid), no blood, no cramps, and eating normal. So it can get better. Keep me posted! Good luck!

Oh, don't feel bad about sharing your success!!!! It is so good to hear that others are doing so well!

Although it is winter down here in Texas as well, that meant it was 75 and sunny yesterday. O.K., I should admit that those temps are a bit unusual but still never anything like Chicago. At 38 and being a full time mom to two (just turned 5 and almost 7 year old) running was my selfish thing so I miss having it to turn to in life!

I will have another colonoscopy on Feb 14th (gotta laugh at the date for this one!) and at that time they will either up my Humira, add another med to it or move on to Remi. Honestly, with severe, advanced pan-colonic Chron's Disease I would prefer they must go ahead and take out my colon. I would be instantly well since there is no other disease involvement in my GI anywhere. From the search I have done, I would have decent odds of a long remission and a good possibility of never having it come back anywhere else. The doc. Just looks at me like I am nuts when I tell him this...lol! At least I a, still on 20mg of Pred. it makes me have enough energy and masks enough of the symptoms that I can function pretty well...oh, if I can overlooks the weight gain, moon face, bone loss, etc....LOL. :rof:

Anyway, I am so glad you are doing so well on your meds and hope it continues for a long, long time! Let me know how things continue for you!

 

[suschex]

BTW, if you do change to Remicade they say it takes 12 weeks or a few infusions, but mine worked in a week. I know a lot of people are the same as I was. Good luck!

Do you know if the time taken to work has anything to do with severity of disease or advancement of disease? I know mine is sever, advanced pancolonic CD...I am wondering if that is why I am not getting better?!?!?!

I am going in for another colonoscopy this week and may be changed over to Remi/Imuran as early as next week.

 

[AdamJC]

I'm just starting humira and I had to go straight back up to 40mg of pred because I was experiencing problems again... im slowly tapering off now.

 

[suschex]

I'm just starting humira and I had to go straight back up to 40mg of pred because I was experiencing problems again... im slowly tapering off now.

Sounds similar to my experience...I was dx'd on Oct. 10, 2011 and was put on 40 mg Pred....Started Humira on Nov. 22nd...came off Pred totally, had to go back up to 20mg now waiting to see when doc wants to taper me back off...not sure he was very thrilled that I went back on to begin with but he was on vacation and I had to do something so my GP put me back on...:ywow: