Sunday, July 7, 2013

Side Effects From My Ulcerative Colitis Treatment

Back in January of 2009 I was started on Remicade. This is a drug which you take via an infusion, and it is approved by the FDA for Ulcerative Colitis. For me, I travelled down to the PAMF Infusion center which is actually in Mountain View, California where Google is headquartered. I am guessing you have probably heard of Google. I will go into details on a later post about the Remicade and the infusion process. The long story short is the Remicade was not working as planned, and I was then started on Humira for my ulcerative colitis.

I can remember the first day I started Humira clearly. I made my way up to my GI doctor's office to meet with his nurse, a woman who at this point was one of my closest friends. (for those of us who have had been given the present of severe Ulcerative Colitis, it is truly amazing how close you can become with your nurses/doctors/even receptionists since they are the first person you see when you arrive at the doctors.

How many people on this planet really don't mind having shots? I feel like I am a macho person sometimes. Fell down playing ice hockey when I was 12 or thirteen and slammed my face against the ice, blood was flying out of my mouth since my teeth cut some things up along with the impact blowing a hole in my lower lip. But needles...for some reason never got used to them. All along, my doctor was telling me how it was no big deal. Well, my doctor was right. Needles like the Humira needle are no big deal. It is so small, I had to blow the picture up to the left just so you could see the thing. Once I arrived, I had my actual prescribed Humira in my hands.

So, on my first day to start Humira, I arrived with my 4 Humira pens and the 4 yellow pages of side effect information that is included. When it came time to do the actual shots, this is when I really started to stall with the nurse. You could ask her, but I believe we may have counted down doing the "ten,nine, eight, seven, wait wait wait wait...." anyways, I was there for about 45 minutes before I had all 4 shots of Humira in me. I was hoping that, when I was supposed to take the medications next(in two weeks) that I would get it going much faster. (That never really was the case, but I did start taking them at home which must have made the physicians assistant happy!)

So that is my story of the first encounter with treating my ulcerative colitis via Humira.

Did Humira Treat My Ulcerative Colitis?
Great great question. One that is a topic of debate among the medical world. Going into taking my Humira I was really severe with Ulcerative Colitis. Has anyone ever been prescribed Humira for Chron's or UC when they were just dealing with a "mild" case of their respective disease? I guess I just assume they save the Humira for when people are not responding to any of the "less dangerous" medications. Well, the fact of the matter is that I was very severe. In looking back on the situation, I would probably only take Humira again if I had tried all the other medications available on this planet including crack cocaine, PCP, opium etc... and going to the bathroom 150 times/day. But that is just my personal decision on when to try Humira again.

Within Two or Three Weeks of Starting Humira:
This was probably about the time where things started getting a bit weird. Someday if the Ulcerative Colitis community thinks it would be valuable, I will pull up my medical records and transcribe them on this website, but for now, I think it was about two or three weeks after starting Humira that some side effects start to appear. It all began as some aches and pains in my upper back/shoulder area. It is the type of thing that anyone can easily pawn off as "oh, I must have slept wrong" or "maybe I pulled a muscle yesterday..."

That is exactly what I did for several days if not a week or more. But as all good things must come to an end, I eventually said no way jose, and dragged myself back the gastroenterology department of the Palo Alto Medical Foundation. My favorite gastro doctor was on vacation while this was happening, so I began working with another excellent doctor until the return of my main one. At this point, I had been under the influence of Humira for maybe about 3 or 4 weeks and I simply could not move. Again I don't remember how bad the skin problems were at this point, but my joints were all messed up. It felt like they emptied out oil in my elbows, shoulders, sternum, and some other parts and I simply was all locked up. To give an example, when it was time to sleep at night, my wife had to push a pillow under my head since my arms were useless. I basically would sit down on the side of the bed, and lay back. Wherever I landed was where I laid. It was almost like dropping off a scuba diving boat, just Humira style. Yeah that's right, my upper body was all messed up including my elbow area. From the waist down, things were fine, thankfully. At least I could walk.

Decision to Stop Humira
As I mentioned, all good things come to an end, and I stopped Humira. This was a decision that was made by me, my temporary GI doctor, and the rheumatologist doctor I saw at the Palo Alto Med. One great part about going to the doctor this day was they prescribed me some Vicodin to take care of the pain. One thing is for sure, Vicodin works on me. Humira does as well, just not how I would have liked, but Vicodin definitely works as intended. The vicodin gave temporary relief, which was better than any present or gift I have received. At this time, there was also a decision made for me to go and up my dose of prednisone to 60mg/day which for a 160lb guy like me is a high amount. But, these were bad times, and drastic measures had to be taken.

Even stranger side effects from Humira:
Along with the Ulcerative Colitis, I now had some horrible joint pains in many spots. The consensus as to what I had come down with was some type of Arthritis. This is actually interesting because Humira is normally prescribed to Arthritis patients to help that. In all honesty, I have a very good friend who is on Humira for arthritis and is doing reasonable good. He has not had any fingernails fall off yet.

For me, another little bonus to go along with the ulcerative colits and joint problems was some real strange bumps on my head. They were something like really large pimples, and they were on my scalp under my hair. And man were they itchy sometimes. The doctors all thought this combination was rather strange, as did my family. I can only imagine what it is like to watch someone in your family go through such strange ordeals. Also, for many of us who have UC, it is not something that just happened overnight, there is usually a long history that goes along with it. So to be adding some more fun on the fire, well lets just say if it don't kill you it makes you stronger. I must be pretty darn strong then!

Time to go to Vegas
After leaving the doctor's office this time, I was heading home with my dad, and the plan was to start up the steroids and also some Vicodin and to get ready for azathioprine. At this point, I was very familiar with all the names of the medication, and this was just another situation where I was going to try out another medication since the previous ones were not getting me better. WRONG. For some reason I can't explain, I always thought the word Azathioprine was scary. maybe its the "z" in there. I did pick up that prescription, but this was the first time I decided not to take it. Basically this was the first time I was going against the doctors orders for any of my treatments up to this point. I wanted to wait until my main gastro doctor was back in the office before popping some more pills. That night, I got home and told my wife the deal, and went online to buy a plane ticket via and flew on down to Las Vegas, Nevada. I stayed at the Monte Carlo and tried to take my mind adrift, which surely happened.

How much did I like my Ulcerative Colitis at this Point?
Most of the doctors I have met with in the past few years have at times asked me this question: "On a scale of 1 to 10 how bad is the pain?" I was asked some variation of this when I went to meet with the doctors from the previous paragraph. I think this is when I started responding with this type of line: "If I had to choose from UC or this joint problem for the rest of my life, I would chose the ulcerative colitis!" That is what was starting to go on in my head, simply based off how limited you are if you can't move. It would be better to need to go to the bathroom 10-15 times per day, then to not be mobile at all right?

Lets fast forward about 8 months to January 2010.
So, now, it is time to share some photos my current skin problems that started developing back in May of 2009, and its January 2010. Most definitely, the skin problems have gotten much better, but they are still there for sure. I have been prescribed things like Clobetosol which is a very strong steroid cream. UV Rays, other rx creams, and other stuff I don't remember. I really don't think these skin problems are here to stay forever right? But, again, the consensus from the doctors at Stanford Hospital, Mayo Clinic in Scottsdale Arizona, and the Palo Alto Medical Foundation is that my skin problems are a direct side effect from the Humira.

If anyone has similar side effects as this, please contact me, supposedly it is a very small group of people who have this type of reaction to Humira, and I would be truly honored to speak live with someone in the same shoes. Lastly, this particular post is very negative on Humira, or at least that is what I am expecting some people may think. Please realize that my goal is the same as every doctor that is exists on this planet. That is to see as many people as healthy as possible. If you or someone you know is currently taking Humira, and is having great results(much like my good friend) than please congratulate those people. My hope would be that someone considering Humira as a treatment option for ulcerative colitis may actually find a way to treat their UC with a much much smaller chance of having these side effects. Had I treated myself with my diet, I am convinced none of this stuff would be taking place now or in the past.

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