Hello all,
My rheumatologist strongly recommended CellCept to me instead of Methotrexate. I’ve been using it for about a week now, and I don’t notice any difference in my pain level or inflammation. I still ache all over. This is very frustrating to me, because I was hoping to notice a change in a big way. Maybe my expectations were too high for this medicine? I would love feedback from those of you who have also used CellCept. Thanks for listening!
-Britt
Hi, I hav been on cellcept since I was diagnosed last year Aug. I believe it takes time for it to start working, (I do stand to be correct) I think cellcept is more to help with kidney function, wen I expressed that I still experienc joint pains n all pains, he suggested I use prednesone n pain killers. Be patient and give it a month or so, if there is no change go back to ur rheumi and try alternatives. 
This medication took about two months to have any affect on me, for 4 months after that I was great, however I then started to experience a serious reaction everytime I took this medication, I am now back on methotrexate and everything is great at the minute. I think every medication takes time to work so just keep on at it you should start to feel better soon -
My family member with SLE and Vasculitis tried CellCept with Methotrexate and antimalarials without success. Dr Michet at Mayo Clinic checked her IL6 number and it was 10 times normal. She started Actemra three years ago this month and is now in a drug-induced remission. She eats a Vegan and Gluten-Free diet. Good luck. Hugs and prayers.
hi there i to have been on cellcept and it did not work for me it made me sick and i was wiped out. i stopped the plaquenill and the prednesone , and im trying to figure things out. im never total pain free and my pain meds if a 75 fentanly patch and pain pills for break through pain. i pray they come out with something that works since the latest new drug was not for me, i was told i fall in that 10% that my lupus seems to be stable however most of my days are spent laying down. dont give up things will work out for you be blessed godsgirl
Britt, I am currently taking CellCept. Actually, this is the 2nd time I am on it. The first time I took it I think my expectations were set so high that I sort of expected to be completely healed and when I wasn't I told the doctor it wasn't working. 3 medications later I am back on the CellCept because it was giving me the better results.
When I began treatment I was started on a low dose and increased slowly until I was on 3000 mg a day. As with any Lupus treatment, it will take a minimum of 2-3 months before you will know if it is helping. In the meantime, are you on any pain medicines or prednisone? That is what you will most likely need to get you through the rough days even after treatment is working.
Hang in there and give it more time! Keep in mind though this may not be the right treatment for you, but there is likely a treatment that will work for you!!!
-Candice
hi
i also tried cellcept in December 2012 and fell into the small percentage that get side effects and came down with a runny tummy all day everyday for about two weeks, it was terrible to say the least... my side effects also happened after a week of using so maybe give it time to really work?
hope it helps you
I have never used that one...so I can't say...but I have noticed when I am given a new meds to try...a bad result will become apparent...long before a good one seems to. So I'm thinking if you are not having any negative results from it...you might need to give a few more weeks. Some of them work more slowly...but work well when they do. Good luck. I was just recently taken off Imuran...because of really negative results...so am down to Plaquenil and Prednisone once again. Seems to be the only two that help a little without hurting a lot...for me. Wishing you good results here in a little bit.
Brittani-
Ive taken cell cept two different times. Both times my body doesnt accept it well. My aching never went away and increased. After the increase to 1000 twice a day, i was vomiting all the time when they finally took me off. You might call your doctor bc there is a test they do to check if your body is able to tolorate it. Similar when you take imuran. Which i couldnt take either my body rejected it. Im about to start chemotherapy for the second time, everyone is due for a tune up right. Feel free to contact me whenever. Ive had lupus for 14yrs and found out when i graduated high school. It may try to bring you down, but your stronger. Have a great day!
Hi Brittani, I've been on CellCept for over a year...had a MAJOR reaction to Plaquinil and my liver didn't like Imuran. When I first started taking it, I experienced some slight nausea, but that finally worked itself out. I'm on 1000 mg twice daily, but we started slow and worked up to that. I'm not sure it really helped my pain that much, but I think it has helped in other areas. I, too, believe it took a few months, so I would definitely give it more time (as long as you aren't having a negative reaction to it). I haven't been pain free since this all began...every day it's just measured in pain levels. I also take Gabapentin 1500mg per day, Prednisone 5mg per day and Amatriptyline (can't remember mg...3 at bedtime). Last fall we decided to wean myself off the prednisone...that was a big mistake! Went back on it starting at 10mg, then backed down to 5mg but I still had a lot of joint pain. So, latest change was going from 2 to 3 Amatriptyline at bedtime and I finally started feel some relief. I'm still not pain free, but pain levels are lower.
I, like you, think maybe I'm expecting too much...I can't stand the person I've become with this disease and just can't seem to find my way back. I keep hearing I need to accept this and learn to live with it, but I guess I'm just not there yet. Haven't figured out what the new normal is because it seems to change daily.
Good luck and I hope you will see some relief soon!
Hi Brittani,
I was on Cellcept for about 6 months along with methotrexate though. I remember it took about two months to feel the difference butby the that time my stomach was starting to bother me. I gave it a fair trial but ended up getting off because my stomach and intestines just got too bad. Lupus has affected my intestines so they weren’t the best to begin with.
I would say give it some time. I know some people have great results with it.
I am still trying to get my perfect combination of meds. My expectations have been lowered as I realize I may not be able to be the productive person I once was. I just want something at least half way there! I hate laying in bed all the time from fatigue and pain. It’s a miserable and very boring existence for me anyway.
Good luck and I hope you get better with this med combination!
Brittani24,
I, too, started using CellCept about 2 weeks ago. I was also given Prednisone, which I absolutely hate, but was told that CellCept takes 2-4 weeks to start to show improvement and Prednisone was the way to have some relief while the CellCept went to work. It's been over two weeks now, and I am starting to feel better. Please give it time. My Rhuemy used to teach at UCIrvine, specializing in Lupus, so although I felt like giving up some days, sticking with it I am starting to see results. I am able to start lowering my dose of Prednisone as I increase my CellCept dosage.
Please follow your docs advice, and if pain is the issue, ask to be referred to a pain managemnt doc.
Best of luck,
DeAnne
we have to be careful cellcept is some times used for chemo patients and long term use is not good. we must fight this thing because it will consume you. have any one tried vitamins ? i started but i could not afford them any more ive heard something about body by vi and there was something else that was on tv i think im gone try the cheaper one and pray for more energy and i want just a little of my life back. be blessed godsgirl
it does take some time for it to work but most drugs do. just take it easy and rest and drink lots of water to flush the meds out
Hi, I have never been on CellCept, but I am on Methotraxte. When I was first diagnoised with Lupus SLE I was having sever pain in my feet, ankles, both shoulders and my neck. I was unable to walk first thing in the morinings and had to take pain pills and wait 30 mins for them to kick in. My Rhuemy started me on Plaquneil by it self and was giving my steroid shots in my shoulders the pain would go away for about 3 months but return. After trying the shots for about 9 months he suggested that I try the Methotraxte and after about 2 months later it worked and my pain and aches through out my body went away. If I stop the Methotraxte for 2wks the pain comes back and I have to get back on it. I haven't experienced any side effects from the drug, I know that it used as a cancer treatment but what am I to do, what are my other choices other than prednisone which is very hard on my body. I still work and need something that will keep the pain at bay and along with the Plaquneil, methotraxte and my oxycodone I'm able to live a normal as possible life.
hi there my expectations was hi to i connect that to faith. i know the day will come and we will be healed in jesus name. godsgirl
Cellcept is much easier on the body than Methotrexate. What other meds are you on?
I’ve been in Cellcept for a year & I love it!! I was on Plaquenil for 3 days & had a major reaction. I was also on Imuran for 5 months & my new rheumy took me off of it but I can’t remember why. I couldn’t tell it had helped though. For about the 1st 3 weeks on Cellcept I had major nausea & loss of appetite. It gradually got better but I still need to take it with food or I get nauseous. I feel better now than I have in years!! I agree with taking something for pain with it. I’m on 1000mg daily of naproxen. In the last 6 months I’ve also started a gluten free diet & found out my thyroid wasn’t functioning adequately. Lupus is different for everyone & so is how you react to medications to treat it. Good luck to you!
Cellcept was given to me to combat the effects of Neuropathy from Lupus. I also titrated up to my current 2000mg day dose and had stomach upset and nausea for the first few weeks. I began to feel better about 2 wks into it and now feel very well. My thought process is clearer. My body moves with so much less pain. The neuropathy in my hand and both feet persists. I'm thinking that the damage there might be permanent ( after 8 mo now). I was so opposed to the prednisone that my Rheumy suggested the cellcept. I'm very glad she did. I also take Gabapentin, plaquenil and supplements. It's true that everyone is different. What works for some does nothing for others.