I take 40mg Plaquenil per day, and Methotrexate gives me severe headaches, nausea and diarrhea. I think my rheumy may prescribe Cellcept for me next. Has anyone had experience with this drug? I have read about the possible side effects and some are life threatening. But, I have been so sick with SLE that ready to try aost anything at this point. I’d be grateful for feedback from other Lupus patients who understand my situation.
Hi!
I’ve been on Cellcept, plaquenil and kortisone for the last six lonths without having been on other medications of the sort before (I got my diagnosis late June).
From what my doctors have told me, Cellcept works very well for treating the internal organs, whilst it isn’t as effective for treating joint and and skin symptoms - plaquenil being the opposite. Because of starting a lot of medications at the same time it’s hard to distinguish what side effects are from what, but I haven’t actually had THAT many of them.
The main thing for me has been diarrhea, Cellcept commonly causes this - it often helps to spread out one’s daily dosage throughout the day. I’m losing a bit of hair, but not horrendously so. I started off with lupus nephritis, and that has improved drastically. And thanks to the Cellcept I’ve also been able to go down in dosage on kortisone A LOT.
I know it puts a lot of people in remission. Not me-I lost my sense of taste, was occasionally nauseous. My doc told me hair loss ispn 't a side effect, I lose a lot of hair in general . I thought it caused intense loss of energy in me, but it’s not listed ever as a side effect . Gout can be a side effect, and I got gout a few month after I stopped taking it. So I think cellcept caused it. Overall, it wasn’t all that bad. I took methotrexate for a week once, and had a migraine the whole time, so I threw it out. I should have taken it for longer, but it also made me a little disoriented. Cellcept was easier by far.
I have been on cellcept for 2.5 years. I had tried Imuran and both forms of methotrexate. My only issue has been stomach stuff. Nausea especially, but it has gotten better in time. For me it has been the most effective with the least side effects. I don't know of anyone that doesn't have some side effects with these meds. It has been trial and error with meds for 5 years, but I have been willing to try so I can function! I wish you the best!!
i was on Cellcept for one year which ended in July 2014. When I first started my protein leakage was 6 grams which was relatively high. Within 9 months of using Cellcept it was negative 0,2 grams and has been ever since. My rheumy eventually switched me to azathioprine because she didn't want me to stay on Cellcept because it is known to cause cancer. The only problems I had with Cellcept is that when i first started I had diarrhea, which eventually stopped. I hope it works for you as well as it did for me. God bless!
Hugs!
I have just started cellcept, and notice nausea from time to time, but am on medium dose of prednisone which can make me nauseous if I don't eat often, so not sure which it is causing the nausea. Doctor game me a rx for Zofran for nausea and it works well. My skin has began to break out some, not sure if the medicine or going off chloraquine causing that. Since I have just started having to wait and see what is what, best of luck.
Curious- why not prednisone? That’s the cheapest fastest way to get things under control. Loads of side effects but then I wean off it as soon as things stabilize. I’ve never been on prednisone more than 9 months.
CellCept I did for a couple years it give me diarrhea and foul body odor and last I knew was still quite expensive.
I did pretty well on cellcept better than everything else
I was on 2,000 total 1,00 a day for like 3 years? Maybe longer
Carla Ulbrich said:
Curious- why not prednisone? That's the cheapest fastest way to get things under control. Loads of side effects but then I wean off it as soon as things stabilize. I've never been on prednisone more than 9 months.
CellCept I did for a couple years it give me diarrhea and foul body odor and last I knew was still quite expensive.
I think that a major reason for wanting to avoid prednisone is that it is quite a dangerous drug, in the long run as well as short. If you've been able to completely wean off it in less than 9 months several times, I'd consider you quite lucky - taking as much as 1 mg of it can start affecting your body, whereas it stops producing its own kortisone. When it stops, it's difficult to make it start again - making the last 7 mg notoriously difficult to wean. For many it can take years to get off it, whereas some never do (granted, that is rare - unless the person is in a constant flare). They're nicknamed "the devil's tictacs" for a reason, after all.
I don't quite know the cost of Cellcept vs kortisone - I live in Sweden where we stop paying for prescription drugs in a year-interval after having hit 2200 kr (approx 300 dollars). What are The general costs for medicines used to treat lupus in the US, if you don't mind?
Victoria, my rheumy doesn’t prescribe prednisone unless she sees no other option, because of the side effects. With regard to cost, people in the US now must have health insurance or face a government fine. If a person doesn’t have the money to pay for the policy, the government will help. People have prescription copays: the patients pays a small fee and the insurance pays the rest.
I’ve never heard of anyone being on such a small dosage of plaquenil. I’ve been taking 200 mg. twice a day for almost 5 years. It’s worked wonders. I just started the methotrexate. Luckily, I am tolerating it well. I thought the minimum amount of plaquenil
was 200 mg. Have you tried that before the cellcept?
Sorry…I was mistaken about my Plaquenil dosage. I take 400mg per day, not 40mg.
I take 1000 mg daily. I know it says take it on an empty stomach but I talked with my rheumy and told him that I am taking it with food. Helps with nausea for me. He says that it’s fine. So far, no problems. Does seem to be helping with my lupus symptoms. good luck.
I tried cellcept and maybe I didn't give it long enough to work but the side effects ( for me ) started almost right away so my doctor switched me to methotrexate and that was two years ago in December, I am currently taking a break from it to get my gi issues identified and cleared up . Hope you feel better soon God Bless Julie