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Treatment

New medication starting this coming Monday

  • By ktinflorida

    Hi Robin,

    Ok, this drug is also known as Cellcept, right? I was on it before I was given my RA diagnosis. They were treating me for what they called Undifferentiated Connective Tissue Disease which they thought was really Lupus. I didn’t think they really used Cellcept for RA, but I’m not a doctor, obviously. Also, let me stress that my reaction was ABNORMAL and incredibly UNLIKELY to happen to anyone reading this.

    I was on it for 3 months without incident. I put the pills on my nightstand before bed and took it early morning in bed, then rolled over and went back to sleep. One morning about 90 minutes after taking the pills I woke up in EXTREME pain. It felt like somebody was taking sharp knives and running them down my arms and legs, slicing me open. It was all I could do to breathe and not scream. I went to the ER in an ambulance. Elevated BP. Tachycardia. They put me on IV morphine and admitted me. I was in for 5 days. Discharged and told to resume all meds. I didn’t because I told them the entire time my only new med was Cellcept. They told me everything was fine. Pain got better enough that I wasn’t muffling my screams, but couldn’t function either. Left with oral morphine.

    I waited 3 weeks before going back on the Cellcept, but this time I was so sure it was the cause, I took them, then got a shower, got ready and packed for the hospital. 90 minutes later, I was trying not to scream and back in an ambulance headed to the ER. Again told them that I thought it was the Cellcept. Got admitted. IV morphine. This time they tried to tell me it was all in my head and offered to transfer me to the psych floor. They discharged me with instuctions to continue the Cellcept. I left and went to my out of state Rheumatologist. He shook his head and said it was a KNOWN, RARE SIDE EFFECT of Cellcept and was listed in the Physicians Desk Reference.

    I only tell you this because the local doctors here would have committed me instead of researching this med. The mere fact that you know someone it happened to means it is statistically unlikely to happen to you. The pain in my extremities continued for about 9 months. It lessened a little bit each day, but it was a long process. It has been 10 years now and I am just fine, but I am leary of my local ER to this day.

    Are your doctors giving you Cellcept for RA, Lupus, Mixed Connective Tissue Disease or Undifferentiated Connective Tissue Disease? Is your doctor a board certified Rheumatologist?

    Trust yourself if something doesn’t feel right, but trust that if this was a common reaction, this med would NEVER have been approved.

    I hate telling this story and scaring people, but I would feel worse if you were transferred to a psych floor because I didn’t give you a heads up. If you’re concerned, talk to your doctor. He will hate my story, but should want you to be comfortable with your treatment. Also, remember that not taking meds and not getting treatment comes with risks.

    I should also disclose that I am on injectable methotrexate and Xeljanz so you know I am not medicine-phobic.

    Not what you expected, huh?

    I hope this turns out to be the med for you or at least, an uneventful failure.

    KT

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