Monday, December 10, 2018

Let's talk CellCept.

Image found here

We all know that Sjogren's is a disease that affects the whole body; and my body reminds me of this frequently.


My most recent flare with it's exhaustion and explosion of rashy skin, demonstrated this eloquently. And Dr. Young Guy responded by increasing my dose of an immunosuppressant. I have taken CellCept for years and have tolerated it really well. But it appears that at this dramatically increased dose, we don't get along as well as I thought.

All medications have side effects. With the prescription of any new medication or dose adjustment, a benefit vs risk evaluation has to take place, and Dr. YG is highly skilled in helping me to noodle through these types of decisions. I agreed on the new dose and began taking it; it wasn't long before I saw with great relief my rash begin to fade and the pain and itching subside.


Several days ago, I began to notice painful rumblings and cramping in my abdomen. Just a little at first, then by the weekend, frequent and very uncomfortable. As in arms-crossed-over-the-belly-bending-over-at-the-waist-stop-in-one's-tracks painful. So John - bless his heart - tossed me in the car and off we went to urgent care. Thank you thank you thank you John AND whoever decided that urgent care would be available on a Sunday.

The doctor that saw me there was almost certain that I had diverticulitis but carefully looked at my lengthy list of medications and noted the side effects of CellCept (mycophenolate mofetil). One in particular - stomach pain. You can read more about mycophenolate mofetil on Medlineplus here;

What side effects can this medication cause?

Mycophenolate may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

  • constipation
  • stomach pain or swelling
  • nausea
  • vomiting
  • difficulty falling asleep or staying asleep
  • pain, especially in the back, muscles, or joints
  • uncontrollable shaking of a part of the body
  • headache
  • gas

Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:

  • diarrhea
  • swelling of the hands, arms, feet, ankles, or lower legs
  • difficulty breathing
  • chest pain
  • rash
  • itching
  • fast heartbeat
  • dizziness
  • fainting
  • lack of energy
  • pale skin
  • black and tarry stools
  • red blood in stools
  • bloody vomit
  • vomit that looks like coffee grounds
  • yellowing of the skin or eyes
Mycophenolate may cause other side effects. Call your doctor if you have any unusual problems while taking this medication.
After a CT scan which did not show anything unusual and after conferring with the rheumatologist on call, the docs determined that CellCept was the culprit. As I write this a day later and having not taken any more of that medication since, it appears that my tummy is settling down. Whew. I have an appointment with  Dr. Young Guy tomorrow and we'll problem solve then.

I am reminded of something that I know all too well but sometimes forget: that medications are powerful tools in our disease but with their power also comes some risk of adverse side effects. I couldn't believe that I would respond this way to a drug that I had taken for so long without issues. But after a dramatic dose increase, the side effects became more powerful than the benefits.

Today I'm lounging around in my jammies feeling very relieved that I don't have to add diverticulitis to my list of diagnoses on my chart.


Kelly said...

Oh Julia, so sorry you had to go through this. Hope you are feeling better soon and can find another med that works and doesn't cause so much mischief.

Julia Oleinik said...