I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, March 31, 2012

Trouble With Imuran

  UC = ulcerative colitis     GI = gastrointerologist     BM = bowel movement  

Around 2:00 AM Monday morning, I woke up with chills .  After tossing and turning for a few hours, I finally got up and took my temperature around 5:00 AM.  It was 102.3.  Since I'm on immunosuppressing drugs, I'd been told that at the first sign of infection, I should go in to be seen right away since my body can't fight it off properly.  Thinking this was the flu, I called in to work and went in to see a doctor.

THE MEDICAL CENTER

It took me a while to get my sub set up, and by the time I was headed to the doctor, my temperature had risen to 103.4.  When I arrived at my medical center, I wasn't sure whether to go to the GI area, who knew all about my situation and history, or the family practice area, who knew more about viruses and infections.  Well the desk I came to first was the GI desk, so I told her my situation (on immunosuppressants, rising fever, etc.) and asked where to go.  She made an appointment with the next available doctor in a half hour.  As I was waiting in the waiting area, feeling horrible and shivering every time I took my sweatshirt off, my temperature rose to 103.8.  I was starting to get pretty concerned about it since I know that if a fever gets high enough, it can start affecting the brain and even cause damage, but I wasn't sure exactly what that number was.  How long would I wait, and how high would my fever get?  I knew that with my medical situation, this exact scenario could come up again, and I started to wonder if and when I should go to the ER instead of waiting around at the clinic.  What if my temp was 104?  105?  I would still be waiting there...

By the time I was called back, I was dizzy, flustered, and a bit disoriented.  I told the lady taking my blood-pressure that my fever was rising and currently at 103.8, to which she gave a half-hearted, "Oh, that's too bad," and put me in the room to wait for the doctor.  When the doctor arrived, I asked him how high a fever should be before I should get worried and not wait around in a clinic but go straight to the ER.  He couldn't give me a straight answer but said that 103/104 was pretty high and cause for concern.  I asked him to take my temperature, and he said he didn't have the ability to do that.  I said, "Isn't that a thermometer on the wall right there?"  He said, "No," and started asking about my UC symptoms.  After I explained my situation and concerns a bit further, he told me to go to the lab to give a blood and urine sample, then go to the pharmacy to pick up some Tylenol to reduce the fever, then go home and rest and drink plenty of fluids.  I asked if there was anything else I should do to reduce the fever (as I was sitting there in a sweatshirt and scarf), and he said not really - maybe a damp cloth on my forehead.  I asked him to find someone who could take my temperature, and an assistant came in and used the thermometer that I had pointed out on the wall earlier to give me a reading of 103.4, then left.  Really?  Was NO ONE at this doctor's office concerned about my fever?  I was starting to wonder if I was over-reacting.

As I was walking out of the office, I tried one last-ditch effort to find out whether I should be worried.  I asked the same question of the girl behind the desk: how high does a fever need to get before I should be concerned about my immediate safety?  She didn't have an answer for me either, but at least had enough sense to call a nurse who would have a better answer.  As soon as the nurse heard the question, she told the girl to make me wait right there, and she rushed right over.  The nurse wouldn't even let me explain my situation - she interrupted me and said, "Before we talk, we need to get this fever down."  Finally!  She told me to take off my sweatshirt, scarf, and shoes, and gave me an immediate dose of Tylenol.  She wouldn't let me leave the area - she took my urine sample herself and had the lab come to me to draw my blood.  After discussing the whole situation with the nurse, I learned that I was pretty much AT that ceiling.  If it got above 104, I was at serious risk, and if it got up to 105, I could start seizing.  After confirming that my fever had gone down to 100.5, she let me go with instructions for keeping it down and told me to keep it below 102.  I felt much better.

Lesson learned: If this happens again, do NOT go to the GI area where they know nothing about fevers; go directly to the family practice area and ask to speak to a triage nurse.  Also, be your own advocate and don't give up, even if all the "experts" seem to be ignoring you.

THE FEVER'S PROGRESSION

When I got home, I kept an eye on the fever and continued with the Tylenol.  By evening I was feeling fine, and the fever was gone.  However, the next morning at 2:00 AM on the dot I was again awakened by chills.  The fever was back and on the rise, so I took more Tylenol and stripped down to tank top and shorts.  When it continued to rise, I  put the fan on me and started using a cool damp cloth on my head, but it didn't stop.  When it reached 102, I took a cool shower, which finally brought it back down, but as soon as I laid back down, it started rising again.  I continued battling the fever with these cooling strategies for seven hours, and it finally broke at 9:00 AM.  It jumped around a bit throughout the day, but remained low-grade and manageable.  By evening time, it was gone again.  The next morning my fever again arrived on schedule - 2:00 AM exactly.  I went through the same battle as the day before, but this time couldn't get it under control; even the shower didn't bring it down.  It was rising quickly and uncontrollably, and when it reached 103.5 I considered going to the ER.  Finally, as I was looking online for a 24-hour nurse hotline, it started to *slowly* go down but was still a battle to keep it under control for the next several hours, repeating the same pattern as before: jumping around a bit throughout the day and gone by night time.

This pattern is what had me curious.  I did a search online and on message boards for "Imuran" and "fever", and the only cases I could come across that had an unexplained fever arriving on a schedule like this told stories like mine that just got worse and worse, landing people in the hospital.  Several days and many tests later, they were diagnosed with something called "serum sickness."  I looked up the term online, and found out that it is a sensitivity to a protein in some medications, similar to an allergy.  Basically the body cannot tolerate the drug, and the only cure is to go off the medication.  The number one symptom of serum sickness is a high-grade fever that appears on a cycle and is gone within a day, and first symptoms can show up anywhere from one to three weeks of starting the drug.  (My first fever was exactly three weeks after starting the Imuran - one week since upping my dose from 50 mgs to 100 mgs.)  I decided to wait to take my morning dose on Wednesday until after I spoke with my doctor about this possibility.

Meanwhile, the results from the bloodwork and urine came back normal.  As I spoke on the phone with my regular GI doctor about the ins and outs of my situation on Wednesday afternoon, she ordered two more tests (chest X-ray to check for a lung infection and blood culture to check for infection in the blood) and told me that since my liver function was normal, I could go ahead and up my Imuran dosage as scheduled from 100 mgs to 150 mgs.  I asked about serum sickness, and she said that it was highly unlikely.  She said if I thought that's what it was and wanted to stop taking the Imuran for a day to see what happened I could, but she was concerned about my UC symptoms returning.  Well, the fever wasn't getting any better, and I wasn't getting any answers, and I knew if it happened again the next day the fever would have me in the ER, so I decided to go off the Imuran.  The fever was gone by that night and did not return the next morning, at least not like it had before.  It stayed below 100 and went back down to normal with some Tylenol.  By Thursday afternoon it was gone altogether.

CONFIRMATION

The fact that the fever disappeared after I went off the Imuran had me fairly certain that what I was experiencing was a reaction to the drug.  However, there are only two other drugs out there for my disease that I have not yet tried, and if those don't work, I'd be under the knife to have my colon removed.  So I felt like I had to be absolutely certain before I gave up on the Imuran, especially since my doctor and roommate (who is an EMT) so adamantly disagreed with my opinion about serum sickness.  So I decided to go back on the Imuran to see if the fever returned.  After consulting with my sister and cousin, I chose to wait one more day with no Tylenol or anything to prove that the fever was truly gone before testing my theory.  Well, my temperature stayed below 98.6 while I was off the Imuran, and then on Friday morning, I took a 50mg dose.  Ten hours later, my temperature was on the rise.  Luckily, since I'd been off the Imuran for two days and only had half a dose in my system, it only got up to 101.1 and was very manageable with Tylenol.  But this was enough to convince me that I had serum sickness.  My body will not tolerate Imuran.

NEXT STEPS

This leaves only two immunosuppressant drugs left for me: Humira or Remicade.  After doing the research, I found that Humira is less effective at treating UC (40% success rate compared to 60%) and takes up to two months to reach full efficacy, whereas Remicade can start working within a couple of hours.  This made my decision for me; my next adventure will be Remicade.  It is administered via a 2-3 hour blood infusion through an IV.  Treatments are more frequent at first (every couple weeks) but maintenance dose is every two months, which is manageable.

Today is Saturday, but on Monday I will schedule an appointment with my doctor to show her the detailed notes I took on exact times I took the Imuran, the Tylenol, and every time I took my temperature to show that my theory about serum sickness proved correct, and to discuss the transition from Imuran to Remicade.

I can't say I'm sorry to say good-bye to the Imuran.  It has had me feeling pretty much like crap ever since I went on it.  I am hopeful that the Remicade will be easier for my body to handle, therefore making it much easier to get back into my diet and exercise routine and work towards my fitness goals.  Either way, I'll be back on that horse starting Monday.  In my last post I ended with a line about when you stumble, you get back up, dust yourself off, and continue on.  Well, this was my stumble.  In this moment I am getting up and dusting myself off, and I am excited about continuing on.  I can't wait to get back into my running shoes, to lift those weights in my home-gym, to work on building that muscle.  I can't wait to continue fighting.


T H I S   W E E K ' S   H E A L T H   L O G
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My Condition:  mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms:  hardly any cramping, loose BM 2-4x/day, tiny amount of mucous, tiny amount of blood, small amount of gas.

Prescription Meds:  azathioprine (100mgs), prednisone (35mgs), Asacol HD (4800mgs), mesalamine enema, Prilosec.

Current Side-Effects: constant fatigue, weakness, shakiness, elevated heartrate, arrhythmia, insomnia, increased appetite, occasional nausea, moon-face, ultra-sensitive teeth, thinning skin, anemia/low hemoglobin count (carries oxygen from lungs to rest of body).

Supplements:  creatine, BCAAs, CLA, L-glutamine, glucosamine, whey protein (post workout), casein protein (before bed), Omega-3, calcium, vitamin D, vitamin C, biotin, multi-vitamin.

Diet:  easy on the tummy (for fever, not UC) - chicken soup, saltines, peanut butter, scrambled eggs, potatoes, oatmeal.

Exercise:  none

Stats:  height 5'7", weight 145 lbs, body fat ?%.

Have Tried:  Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.



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4 comments:

  1. I had something very similar happen two weeks into taking the Azathioprine (was 102.5 at it's highest which is mild in comparison to yours). I started having a fever out of nowhere with zero other symptoms. My reaction was the same, I called my GI right away and worried it was due to the drug. He told me to treat it like the flu but if it persisted or got higher to call. Mine also came at around 2-3 every morning and the chills/shaking were just uncontrollable and severe. This happened for 3 days straight and then just went away. I have had no problems since then. I stayed on the Azathioprine, but I was very worried for a bit that I was going to have to go off. I'm not quite ready for Remicade or Humira. I've had major fatigue also, but my GI believes it's just the inflammation and not the drug. He thinks the fatigue will pass as soon as the Imuran starts to fully control my flares. I hope he's right! Thanks for sharing!
    ~M

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    Replies
    1. How bizarre that yours just disappeared like that - the body is a mysterious thing.

      I've read before about people's doctors saying that the fatigue is due to inflammation and not the drugs, but I tell you after living with this disease for seventeen years, it has NEVER caused the kind of fatigue that the aza did. Within two days of going on that drug I could barely get out of bed. Hopefully, though, your body will adjust, and things will get better. (That's what I was hoping for myself before I had to go off of it.) Good luck with the azathioprine. I hope it works for you.

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  2. Hello,

    You will improve if you cut out the scrambled eggs. Scrambling the eggs induces an iron superoxide radical to form which will cause sypmtoms as well as being really high in sulfur. If I had found your blog earlier I would have warned you off the whey and casein protein also. Stick with skinless chicken, ground turkey, and soy yoghurt. Avoid black and white pepper, too much salt and yeast. Eat like you are gluten intolerant and avoid yeast. No bread, milk, black or white pepper, too much salt, or super spicey foods like jalepenos or ginger (thins the mucus-bad). Stew all your vegies and take psyllium husk once a day at lunch. No caffein or alcohol. Instead of potatoes and oatmeal try white sticky rice and gluten free corn bread.

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    Replies
    1. Actually I've had this disease for seventeen years and have done literally countless hours over many years worth of research, and the one thing I can say for sure about ulcerative colitis is that everyone responds differently to different foods and treatments. When people "recommend" things to me about my disease by just telling me to do it as if I don't know any better, it is almost offensive. Scrambled eggs are one of the few things that don't irritate my symptoms even when I'm at my sickest. I am not gluten intolerant but I am intolerant to modern wheat. I can, however digest spelt just fine (an ancient form of wheat). Trust me, I have a VERY good sense of what foods make me feel better or worse when it comes to my disease, and I reign in my diet to varying degrees depending on how bad my symptoms are.

      One reason I'm trying these extreme drugs and now scheduling surgery is because I want to be able to eat like a normal human being. At this point I don't have a choice about surgery because no amount of diet restriction or drugs can help me (trust me - I've tried them ALL), but even if I could control my UC with a highly restricted diet, I would still choose surgery so that I can live my life to the fullest.

      Right now my symptoms are bad, but my current diet is one of the only things keeping it from completely spiraling out of control. If I was eating what I wanted (including meats, like you suggest), I would be hospitalized right now.

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