Some background:
My wife and I enjoy CrossFit, mountain biking greenbelt trails around Austin, traveling. We did some fundraising for Team challenge CCFA and ran the 1/2 marathon in Vegas Nov 2013
Symptoms:
Nothing major
Giving in to Biologics
Hello, my name is Lane and I live in Austin, Tx. I have been married to my wonderful, supportive bride since April of 2008. I have a 14 year old daughter and 6 year old boxer. I’m a manufacture sales rep and sell HVAC products and have been doing this job for 19 years. It’s a very hectic, fast paced job and the stress level can be very high at times. I try to work out 4-5 days a week doing CrossFit. We eat mostly Palo diet and gluten free. However we are not strict to this all the time.
I started having symptoms in October of 2012. By February 2013 going into my colonoscopy I was pretty sure I had cancer. I was going to the bathroom several times through the night and frequently during the day with urgency. Most the time this involved being bent over on the toilet with abdominal pain and just blood production. Scary stuff…
Colonoscopy revealed left side UC. I don’t remember exactly but I think it was in the 30-40 cm range. Dr started me on Lialda and after a few weeks I was not having much improvement. Next visit I switched to Apriso and we stated talking about Prednisone. But at this time I was very reluctant to get on Pred because of the horrible side effects I had read about. Weeks later I surrendered to the Pred and this started a years’ worth of roller coaster tapering on and off Pred as I tried Mesalamine Enema (not a fan), Asacol, and Azathioprine. I actually respond very well to Pred with little to no bad side effects. However, I realize this is not a permeant solution.
Fast forward end of March of 2014 and I was admitted into hospital with DVT and pulmonary embolisms. (8-10 clots made it to my lung) Had about a week of strange symptoms before I finally decided to go and check it out. Strangely enough not real big flare at the time this all happened. But now it’s time to get serious about getting this UC under control.
April of 2014 and I started discussing biologics with GI as it appeared I was Prednisone dependent. Over the last year while trying the different meds I would start at 40mg Pred get into remission and begin the slow taper. I could get down to about 7mg but below that blood, frequency and urgency would come back.
In June 2014 I started taking Humira. Absolute miracle drug for me. Off Pred and maintaining remission. Within a couple of weeks everyone I ran into would say “have you been in the sun?” Uh, not more than usual. By December 2014 my face started peeling. By end of January 2015 I made an appointment with my dermatologist as my face was peeling off, cracking and bleeding behind my ears and red spots and rashes over my body. Got some good prescription lotions that have definitely helped but not cured the situation.
Due to the skin reactions I have made the decision to switch to Simponi. Took my first shot February 12th. Fingers crossed and good Lord willing this will be the one….
I currently take Azahioprine (200mg per day), Simponi (after loading dose,100mg 1x/month) and VSL#3 DS (daily)
I really have not been able to identify any food or beverage that sets me off with the exception of diary. I avoid milk and ice-cream. But cheese even queso is fine?
Just wanted to share my UC life so far as I have enjoyed this site and following other folk’s battles and successes.
Good luck to you all and praying for cure soon.
Philippians 4:13
Medications:
Side note, before starting the Prednisone I did attempt a very clean diet, gluten free, no alcohol or process sugars. It did not improve my condition or get me into remission and I submitted to the drugs.
written by Lane
submitted in the colitis venting area
Hello, my name is Lane and I live in Austin, Tx. I’m 41 years old. I have been married to my wonderful, supportive bride since April of 2008.
Hi Lane!
I feel like I am in the same boat as you. I too have become Prednisone dependent, as it seems to be the only thing that helps. I have tried Lialda, then they switched me to Apriso along with Canasa suppositories and still on the Prednisone.
I cut back on the Apriso and Canasa as my hair was falling out like crazy. I am doing the pred taper right now and I have started bleeding again, hate the fact that prednisone is the only thing that stops the bleeding.
I took Imuran for 7 days last year and got a really bad URI so they told me to stop and I was hesitant to go back on it so I was hoping the Canasa and Apriso would do it, but it hasn’t.
My question for you is After how long on being on Humira did you start seeing the skin side effects? Also, I see you took both Imuran and Humira, I thought the docs only wanted us to take one or the other, I didn’t know that you can take both at the same time. So did the Imuran alone not help you at all?
I have an appt next week and I just know they are going to want to put me on some sort of biologic. Is the Simponi not supposed to be as harsh (when it comes to side effects) versus Humira??
Thanks for any info, hope you get to feeling better soon!
Hey Jenna,
I started having intolerable skin conditions about 7 months into Humira. This included cracking and bleeding behind my ears, peeling of my face at hair and jaw line, and strange red spots and rash on arms and legs. I have only been off Humira for 4 weeks and have sense started my first 2 injections of Simponi. So far there has been no miraculous improvement to skin with the exception of the prescription lotion that my dermatologist has given me. Time will tell. I’m not sure how long it will take for the Humira to work itself out of my system.
The original plan when staring Humira was to eventually stop taking Imuran. I started the slow taper and as I got down to about 100mg a day in lieu of 200mg I had been taking, I felt like my symptoms were getting worse. Talked to my GI about it and he recommend a go back to my original dose of Imuran. He does not seem to have issue with me being on both.
My insurance company made me take Humira first before they would let me try Simponi. Otherwise from the research I had done I would have preferred to start Simponi first. In my opinion from the research I have done on both there appears to be less skin complaints on Simponi.
Thanks for your comments and please feel free to hit me back with any questions I might be able to help with. That’s what great about this website. We can lean on each others experience while dealing with this dreadful disease. I’m available by phone too if you need to bend my ear.
Thanks and good luck to you
Lane L
hey lane!
I have had a lot of the same issues you are having. PREDNISONE SUCKS! I tried Remicade and the first time it worked WONDERS for me, but the second time I took it I had a horrible allergic reaction, sure enough..I had developed antibodies against it. I was diagnosed with UC in 2002 and had been on all kinds of weird stuff back then…then finally LIALDA came out and I have been on that for years. I also tried Azathioprine and it didn’t help me. I tried Uceris which didn’t work for me, but may be good for you to look in to if you cannot handle the Simponi. It is a steroid but doesn’t cause all of the crazy side effects that prednisone does, and you can be on it for a longer period of time.
At last, I tried Simponi and it helped for a while, then they had to increase my dose…then finally my body stopped responding. I actually live in Houston…I know that Simponi is extremely expensive, please send me an email if you would like amsies811@gmail.com so I can give you some info….
I am now waiting for approval of the new medication, Entyvio. I also have recurring C. Diff which I cannot be more passionate about… WASH YOUR HANDS AFTER USING THE RESTROOM and take PROBIOTICS, especially while taking antibiotics. This disease has totally knocked me out and people with UC and Crohns have a very hard time getting rid of it because we already have so much going on in our intestines. I am awaiting a clinical trial here in Houston for a FMT any day now…but I have had C Diff for over a year.