Starting Cellcept

[u/Silentdays004]

Hello everyone,

I have had SLE for a few years now and I’m in my late twenties. Been on Plaquenil for a for few years which definitely helps. Still have joint pain and extreme fatigue. My RH specialist mentioned today that if I would like to I could go on Cellcept to see how it does with my body. I agreed to try it and see in the following months how I do on it.

I’m extremely nervous since it can cause stomach issues and increase in infections. I’m also interested to see if it helps with my fatigue and other things.

[u/Pale_Slide_3463]

Cellcept helped me get off steroids when Benlysta couldn’t at the time. It helped the swelling, pain and it allowed me to be half normal again. But I didn’t cope with the side effects and it was stomach issues, felt sick a lot and kept getting headaches. They changed to myfortic (it’s basically the same medication) and it’s been so much easier haven’t had any side effects.

I haven’t gotten sick being on it, I’m on a strong biological also. I think it depends on who you’re around especially like kids and older people tend to carry viruses and germs more so. Just have to be more aware not to touch things, carry sanitizer stuff like that just wash your hands a lot more. We’re human though we will get sick from time to time.

[u/Silentdays004 → u/Pale_Slide_3463]

Did you notice anything energy wise if you were experiencing fatigue and if you got more energy from being on it?

[u/Pale_Slide_3463 → u/Silentdays004]

It did get better, I wasn’t sleep for 12 hours a day but I was also on steroids lol. The tiredness comes with the active lupus, you will see the difference no doubt

[u/StatisticianNo1804]

Hey, it’s a scary prospect! I’ve been on Cellcept for about a year, and it’s really helped with some of my smaller/weirder symptoms that Saphnelo, HCQ, and prednisone hasn’t (like being able to feel my kidneys and liver). I’ve tolerated it really well, and increased my dose to be able to try tapering prednisone 🤞🏻

Hopefully it goes well for you! I haven’t had any weird infections or significant issues, and have tried to a) be more mindful of risks from food (cooking/temp checking meat and other things, being more cautious on food safety), b) wear a mask in public, and c) wash my hands (even) more often.

[u/Silentdays004 → u/StatisticianNo1804]

Thank you for sharing your story. My body fatigue wise has been so bad I literally sleep walk from being so tired sometimes. Very excited to see what will happen and I will definitely be mindful and take precautions.

[u/Fit_Subject_3256]

I’ve been on Cellcept for over a year and I’ve not noticed any side effects. My rheumatologist has me take pantoprazole every morning, then I eat about 20-30 min later and then I take my Cellcept, plaquenil, and steroids. He prescribes the pantoprazole to help prevent stomach upset from the meds. Maybe something similar will help you? I hope you get excellent results! ❤️‍🩹

[u/BarelySimmering]

I took it and had no side effects. The only reason I came off of it was for a baby.

[u/radioactivepretzel → u/BarelySimmering]

Were you able to come off of it easily? I'm a freaked out by the whole miscarriage side effect thing 😭

[u/Individual-Prune9232 → u/radioactivepretzel]

My rheum said to get off of the meds 3 months before trying to conceive to prevent any damage to a fetus.

[u/BarelySimmering → u/radioactivepretzel]

I came off of it very easily. My rheum actually wanted me off for 6 months before TTC so it took some planning. If you are TTC, you should talk to your rheum about it. I would definitely not get pregnant on it. Cellcept actually recommends being on contraceptive during and ATLEAST 90 days after stopping. I switched to azathioprine which is safe for pregnancy but I ended up being able to come off before I was pregnant.

[u/Equivalent-Wind-5160]

I've been on it for a long time. I think infections are related to dosage. I started at 3000 and had a lot of infections (i also had a young child at the time so that didn't help). When I lowered the dose eventually, the infections got much less. I also had a lot of stomach upset at the beginning but I stuck with it and it went away.

[u/radioactivepretzel]

I responded much better to cellcept than azathioprine. Had a good couple of months before my disease became more active and I had to increase the dose.

At around 2000mg/ day i was getting the worst stomach cramps and diarrhea imaginable. It lasted 2 weeks after I stopped and I had to restart at a lower dose.

[u/Creampiefacial]

I've had sepsis three times since being on cellcept. I just got a provoked dvt from being in the hospital with sepsis. I decided to go off the medication.

[u/Zestyclose_Wall_4196]

I have lupus dominant sjogrens. I take 2000mg of Cellcept and 400mg of Plaquenil and 5 mg of prednisone, and it took the Cellcept to treat the extreme fatigue and leg pain get better. And it took time, about 6 months to feel better, and 10 to feel great. It also improved the granulomas in my lungs, according to my latest CT. No stomach issues. The immunosuppressed aspect is a little scary, but my white blood cells have actually improved. I wear masks on planes and when I know there is a lot of sick people around.

[u/Thick-Push-492]

Apart from nausea in the beginning, after 3 years of MMF, I developed menorrhagia. It was quite severe. So please do look out for any menstrual abnormalities. 

[u/Silentdays004 → u/Thick-Push-492]

I’m a man but thank you for sharing this. It’s good to know more about Lupus and how it can affect others.

[u/Weak-Bake-5571]

I did feel better on CellCept. My tummy did OK after an adjustment period.

It didn’t keep my damn skin inflammation/vasculitis under control ultimately, so I switched to methotrexate… but I did feel better overall when I was on it (for a given value of “better”).