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Life With Lupus

Stopping cellcept for illness


#1

I have been on Cellcept for about 6 months now and starting around Christmas I felt the best ever since being treated for Lupus. The joint pain is gone and I actually have energy. Then I got hit with a cold and lost my voice and had coughing at night. Since it wasn't too bad and I sounded worse than I felt, I did not stop the Cellcept. I went in last Thursday for my normal scheduled rheumatologist appointment and she asked if I was holding the Cellcept and I told her no. She said to hold it until I was feeling better. She did give my a 7 day course of antibiotics since my throat was very red and she saw drainage. So I stopped the Cellcept and woke up this morning feeling like I have been hit by a bus. Joint pain, swelling, headache, fatigue...

so my question is when should I start taking the Cellcept again? After the antibiotics are done? Thanks for any advice! My rheumatologist office is very difficult to get through to ask a question.


#2

Hi Heidi! I'm sorry that you're under the weather and under-medicated. However, I don't think that any of us are qualified to tell you when to get back on the medicine. Can you ask to speak to a nurse who works with your doctor? Or leave a message for your rheumy asking this question? Or enlist a friend or family member to call your rheumy's office and deal with the waiting time and questions.

At any rate, I hope you have someone to take care of you. Getting off of our meds feels like a truck hit us. I do completely understand how terrible you must feel. Looking over your symptoms again, some might be caused by your infected throat. Please get a hold of your doctor!!!

Hugs and some nice tea with honey in it,

Petunia


#3

Thanks Petunia, I know I need to get a hold of my doctor. Unfortunately she just uses space in another doctor office, so the phone goes right to her nurse....I've tried calling before and the phone rang for over an hour and no one answered. One time it took me calling daily (stayed on the line for over an hour each day) for over a week until someone answered. I'm in the process of switching rheumatologists and don't have my new appointment until Feb. 8th.

I'll keep trying!


#4

When a person has a very serious disease like Lupus, they must have a Dr whom they can reach in an emrrgency. Please find a new rheumetologist! And, good luck with your med woes.


#5

Hi Heidi,

You need to get a hold of your Rhematologist and get their email/cell phone so you can ask them questions when it is times like this. My daughter's Rheumatologist asks her to stop cellcept till the antibiotics get over. See the Cellcept suppreses your immune system. IF you have a bacterial infection, it is better not to suppress your immune system as it needs to fight the infection. The antibiotics helps fight the infection. Once the infection is over (antibiotics) are over, then the dr. asks her to continue.

I am just telling you what the Rhemy does for my daughter, you still need to ask your dr before you decide to do anything.

Good luck to you and take care,

Avanch


#6

It’s amazing how many people on this site have trouble reaching their rheumatologists. It’s not okay. I called on Monday to report that one of my fingers was locing at the joint and was in there a few hours later to get a shot in my hand to take care of the tendonitis. (Yes, the shot hurts, they put novacain in before the steroid, but once the needle is out, it stops.) Everyone should get that kind of response, or close to it. I go to a 2 doctor practice. I agree that once the infection is gone you can probably start , but you need the doctor to say when.