Is anyone taking Cellcept? How many ... - Scleroderma & Ray...
Is anyone taking Cellcept? How many mg. a day are you taking? What shape are your lungs in? Have you suffered any side effects?
I am taking Cellcept (Mycophenolate Mofetil) at 2.5 grams a day and have been for over 5 years. I have noticed that I get Blurred Vision, Dizziness, Headache, Nausea, Stomach Pains, Tremor, & Tiredness/Weakness. But I am not sure if this is down to the Cellcept or the myriad of other drugs that I have to take. I certainly have not had a problem with my lungs other than a collapsed lung but that was prior to my starting Cellcept.
I am assuming that you have just started on Cellcept and are you having problems with your lungs ?
Yes, my dr. put me on 3000 mg., which makes me feel too sick. My lungs are in bad shape. I feel fine on the 2000 mg. dose, but not sure if it will help me.
Are you spreading the dose out through the day ?? I forgot that when I first started I was taking it I was taking it all at once, but now I have it three times a day all is well
I take it twice a day.
Then try taking 1000 mg three times a day and let me know how you get on. As I will be interested to know.
I did not think of that; however, it's so hard to time the dosage around meals now, a third dose would be quite a challenge. Also, the high dose is scaring me! I have not read of one person on this high of a dose.
I did try 3 grams a day for a while, but I was having a few issues with nausea which we thought might be connected. Subsequently I ruled this out as the cause, I'd go up to 3 grams again if needed. I take 2.5 grams three times a day, first thing in the morning, at lunch time and last thing at night. I don't make any great effort to have it with meals, certainly the late night one is just with water.
I am also on 3000 mg a day. I take 3 500 mg pills twice a day. It makes me nauseous but I deal with it cause it has helped many lungs so much!
Hi. I have been on it for a year, have found that 2.5g a day suits me. No side effects to speak of apart from the odd mouth ulcer. Feel much much better and it's definitely working. My lungs appear to be fine at the moment. Have to be careful with infection, but I'm not getting ill more often than anyone else. All in all I'm really happy with it. Hope this helps.
Hi
I take 2gms MMF a day and have done for 4 and a half years, when I first started I got stomach cramps and diarrhoea for a couple of months but after that no serious side effects and it works I have been a lot better on it than I was on Azathioprine. I also take Prednisolone 8mg per day and a few other meds. Lungs OK still get bad asthma but it's a lot better than it was.
I have been taking Mycophenolate - Cellcept - (2000 mg day) for the last 9 months. The only side effects I have noticed are the tremors (not all the time) and tiredness. I have pulmonary fibrosis in both lungs (the left is at about 50%) and have just developed pulmonary arterial hypertension (taking Letairis for that). I also have Raynauds (lieast of my problems). I am on oxygen (3 liters) 24/7. Since I am taking quite alot of meds who knows what side effects are with each drug. The major drugs I am taking are mycophenolate and Letaris. As for Mychophenolate the biggest thing you have to watch is to not get infections. This drug drastically lowers you immune system so you have to be very careful. Also remember to not take live vacines such as those for pneumonia. I am not trying to portray this as a pitty party- this is just the way life is. I still do as much as I can and make sure to get plenty of rest. I really think a positive attitude and keeping as active as possible is the best things in fighting all of these problems. I you have any other questions please let me know. Good luck in the future with this drug.
My dr; put me on 3000 mg. day and I thought this was quite high; however, my lungs are pretty bad, I felt very sick on this dosage and lowered it to 2500, still got sick, so now I'm at 2000 and feel better. I do try to keep a positive attitude; it's getting harder though, as things progress. Thank you for your info.
Good Day,
Yes, we have been on Cellcept (2000 mg day) on and off for over a year. I have only noticed that, I get headaches here and there. Nothing that, a tylenol can't take care of. I was off of it for 6 months because, I under went a six month treatment of cytoxan for the infection cause fibrosis in my lungs. I don't have the percentage of damage but, I do know that the right side is affected more than the left right now. Since I have restarted the cellcept the other side effect I had for a week was diaherra. This is one of the side effects from this drug. You have to back off of some of the medication for a few days to get the diaherra under control and then work it back up to the full dose again. Hope this is of help and call your doctor for answers....that's why they are there. Good luck!
I was also on cytoxan and got many infections. I lost 3 teeth in the process, due to infection. I had a serious ankle wound which was infected for 7 months. So this time my dr. put me of Cellcept---3000 mg day, which I thought sounded high, but he says my lungs are in bad shape. This dosage made me sick so I lowered it now to 2000, which I feel fine on. I just hope it's enough to stop the lung damage. Thanks for your comments.
Hi, i've just posted a similar question on here! I am on 2g daily, and its the second time I have been on this doseage now. Both times it has made my scarring worse. Im glad im not the only one who seems to react badly to this drug! First time round I had to have Cyclophosphamide for 6 months, this time I am now waiting to see what they are going to put me on..
Keep warm, think positive
xxxxxx
Scarring?? What sort of scarring ?
Scarring on my lungs, I'm not too sure why or how but it shows on my X-rays x
Fibrosis of the lungs from scleroderma; they call this scarring. Ashton, I've never heard of the scarring getting worse from the drug; I think it just wasn't working and your disease progressed. I hope this drug works for me, God willing, because it's a last resort.
I have scarring on my lungs, cracked glass, they call it. I am on a clinical trial.
Up to 3000 mg of Cellcept daily, take half morning and night. It makes me sick to my stomach if i don't eat. Great way to lose weight. I really don't see any improvement in the lungs as yet. 12 big pills and more a day is a lot. I really don't think taking that much of anything can be good for a person, I am short of breath, but the inhalers don't really work, like for asthma patients. The lungs get tight because of the Scleroderma. Never smoked but worked for airline for 15 years in smoke filled cabins. Who knows what causes the scarring? I read that in Europe they have found ways to reduce the scaring, but none of my dr's know anything about it at UCLA.
