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Old 05-16-2007, 09:31 PM   #1
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raginstormcloud HB User
Question Cellcept - has it worked for you??

I'm more of a reader then a poster on this board, and I've learned a lot, but I'm wondering if anyone here has used cellcept and if it's worked for you? I was diagnosed with Lupus this past December after being 'sick' for only just a couple of months before that, and then a couple of weeks later I was diagnosed with Stage IV Lupus Nephritis and have been on chemo (Cytoxan) ever since. My Lupus is VERY aggressive, and my Dr. has been treating it aggressively - I've had 5 rounds of chemo (once a month) in the following doses of Cytoxan - 1500mg, 1800mg, 2100mg, 2500mg, and the last one 2900mg. I was hospitalized after the last treatment when it almost obliterated my WBC...I dropped to .5 and was in neutropenic isolation for a WEEK. My overall WBC finally came up, however my lymphocytes are still way way (4 - normal is 19 - 55) low which is a concern, plus I've been constantly nauseuos, and feeling just plain bad ever since. Matter of fact, when I was hospitalized, the doctor's at the hospital were shocked at how much I was being given, and one even told me that 2900mg was considered a lethal dose - however, my Dr. did confirm what I had been given and his reasons for, etc.

To make a long story short - I was due to get my 6th chemo treatment this Friday, however, my Dr. wanted to see my lab results first before making a decision to hold out for a while, give it, or what. Well, between me feeling really bad and it hitting me as hard as it has and my labs as they were although he absolutely prefers to use the Cytoxan, he told me he wanted to change me to Cellcept to see if I tolerate it better since I've been suffering so much. He prefers the Cytoxan because it's been proven to work, however, studies have shown Cellcept might work too, and he is willing to try that if it will help me - but there is a chance that it won't. Not to mention, the side effects, which seem to LOVE me with all my meds, aren't any better to read about then the Cytoxan's. So I could get even worse if it DOESNT work.

At least on Cytoxan I'm miserable, but I know what to expect. Is anyone else on Cellcept?? Has it worked for you?? Any advice???

 
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Old 05-17-2007, 12:56 AM   #2
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miyu HB Usermiyu HB User
Re: Cellcept - has it worked for you??

wow, you shound like hell.

I don't know anything about what you said, but I though I would just post to tell you how strong you are. you type, and you sound so normal for how you must be feeling. thats so great

are you able to walk and get regular exercise? i know when my mom was on chemo she could hardly walk, and the sickness is no fun. good luck, I hope someone who knows can get back to you soon. but I will help with the bumping if you need

Last edited by miyu; 05-17-2007 at 12:57 AM.

 
Old 05-17-2007, 04:02 AM   #3
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Thumbs up Re: Cellcept - has it worked for you??

Fortunately, throughout most of this I have had my best friend who came from out of state and stayed with me and my family around Halloween of last year right after I started getting sick until just about a week ago when she left to go back 'home' for several weeks to see family and take care of some things. To be quite honest, my husband has not been very supportive at all, and has only been to one of my appointments. I also have five children ranging in ages from 3 - 16, and if not for my friend, I don't know how I would have made it.

I have had to remain pretty active regardless of how sick I have felt, because through all of this, I have been the primary person to run the household/take care of chores & assignments/bills etc. for eight people which is no small task - but my friend did take a lot of the weight off of my shoulders and without her help there are many days I could not have made it through.

Too many times I have dropped to my knees due to the dizziness and fatigue, only to have to get back up and keep going again as soon as it passes. Her going NOW is actually pretty rough, considering, but I am doing the best that I can and can't wait until she comes back home, lol.

I'm just worried about whether this new regimen is going to throw me for a loop or make me worse - every medication I am on or take, the side effects seem to come out in full force. And it worries me that my Dr. wants to change me to this because it might not work, where as we know for sure the Cytoxan will. I understand my body can take so much - I'm just worried about taking one step forward and three steps back when right now I'm barely keeping even by what little hair I've got left, lol.

Believe it or not, the computer is about the only way I communicate anymore - I do not write because I cannot due to the shaking/tremors, etc., but I can type just fine . If I can't email it or type it lol and print it out forget about it. Good thing I don't have to worry about writing too much about anything. Bad thing is, my eyes are starting to really be affected by the prednisone I am on - so hopefully I don't lose this as well.

Anyways, thanks for the boost - I'll take any I can get right now!!!

Last edited by raginstormcloud; 05-17-2007 at 04:05 AM.

 
Old 05-17-2007, 05:57 AM   #4
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Re: Cellcept - has it worked for you??

That never stops amazing me how woman are such good care givers. Its been like that since way back when. But it was the same for my mother when she was really ill, she was always complaining, and since I was a child, I couldnít understand, its like she was speaking another language, how can someone be sick when Iím so healthy? Me and her boyfriend at the time, got tired of hearing, it, because we couldnít understand it. And I remember her saying to me ďI wish you had itĒ which I think she would have taken back, but she was just really ****** off. Now as an adult, I feel bad that I couldnít understand, and now I totally do understand. My mom eventually stopped complaining, and we thought she was better, until I asked her, and she said ďno, she just stop complainingĒ and is trying to live to her fullest. It hurts so bad now to remember her lying in bed with her eyes rolling back in to her head, and not being there for her. No one was. so Iím glad you do have a friend to be there for you.

Have you also looked at holistic ways of dealing? I mean if its aggressive, maybe you can be too, I donít think there is anything wrong with adding something like Chinese medicine to chemo. I know with cancer, doctors will tell you not to, but I know of someone who didnít listen to that and did add Chinese medician along with chemo and she beat it. And now she only has to worry about the common cold, which she only visits her Chinese doctor. And I KNOW organic food, and a special lifestyle can benefit. People these days are just so unhealthy as a whole. And I canít help but to think it is more environmental then anything. Keep searching, finding new ways of fighting it, sometimes God come to us with new approaches, but its to scary for us to try.

Its a little off topic, but for me, I have had asthma since I was 7 years old. And today my entire immune system is compromised. I was talking to a holistic doctor who has a new way of treating asthma, (new=scary) but it means that I have to stop taking the medication that regular doctors give me, that I have been using for 20 years, and that is covered by my health care, and start spending money I donít have. But Iím now at the point where I am going to try it, I could gain my life back! And I think I believe in it now, because why is my body attacking its self? There is something not right with it, and Iím thinking even though my asthma medication saves my life. What is in it? What has it done to me in the long run. Doctors say its perfectly fine, but is it really. So in 2 weeks, Iím going to try it. And for 2 weeks before hand I am going to stop asking the doctors for help and start trying to help myself.

I know this is not for you, Iím just saying always keep your eyes and ears open, and see if God is trying to tell you something too. Trust yourself, even if your doctors say another thing, this new treatment that your doctor is offering may actually work better then what you are on. Or maybe the change is just what your body needs. Anyway Iím babbling, so good luck, you can always keep posting and we will support you, and wish you the best in whatever you choose to do. my prayers are with you. I'm going to keep talking with you until I hear you are better.

 
Old 05-25-2007, 03:40 AM   #5
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Smile Re: Cellcept - has it worked for you??

I was previously on Imuran for about 2 years which as you know has it's own wonderful side effects. I was sick all day long from the drug and had to keep taking other drugs to counter the side effects of the Imuran. My doctor finally took me off of it in December when the Cardiologist thought that I had developed an Aortic tear from the Imuran (Yes it can cause that after just six months and I had been on it for 2 years!). By the way, an Aortic tear is fatal and there is no warning. Anyway, my doctor switched me to CellCept in December and for the first time in 3 years I actually went into remission!!! Not only that, I don't suffer from any really negative side effects from it other than some anemia which I am being treated with supplements & an Iron rich diet, as well as, Procrit. So, I say go for it! Try the Cellcept and if it doesn't work as well for you, you can always switch back. Just keep a daily diary of how you are feeling during these changes in medications and show them to you doctors. That is a tremendous help to them. Hope that you begin to feel better soon and keep up the good fight. If you need hope, encouragement, some laughs, or just some fun to let steam off, let me know

 
Old 05-25-2007, 11:46 PM   #6
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Question Re: Cellcept - has it worked for you??

Alicia, I am really curious as to what dosage you started on, and how your doctor progressed you??? I am starting on 500mg once daily, then in two weeks 1000mg (1g), then 4 weeks 1500mg, then 6 weeks 2000mg (2g) which I will be holding steady on at that point until my doctor says when. It took an extremely high and almost lethal dose of cytoxan (2900mg) before I responded...so I'm worried I'll go backwards before I go forwards on this.

Did your doctor do the same with you??? Please let me know, and if anyone else knows or has experience with Cellcept I would REALLY appreciate it - thanks!!!

 
Old 05-26-2007, 08:13 PM   #7
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Lmmr HB User
Re: Cellcept - has it worked for you??

Hi, Iíve never posted here before, but Iíve been lurking around here for quite some time. There didnít seem to be many people answering this question, so I thought I'd be brave and offer up my experience to you. Iíve been on various drugs since I was diagnosed in 2001 at the age of 22. I have taken both Imuran and Plaquinel, both of which I didnít tolerate well. I have been on methotrexate since 2003.

My Rheumatologist had to keep increasing my dosage of methotrexate to keep my symptoms stabilized. Eventually the dose became so high that it began to affect my liver. I have been extremely lucky, I have had no major organ involvement, but my symptoms kept progressing, so my doctor felt it was important to get everything under control. Since I couldnít take Imuran or anything else he had in mind, he started me on Cellcept back in January of 2006, so Iíve been on it for almost a year and a half.

I started out on 500mg daily for a month, and then moved up to 500mg twice daily, which is what he has kept me on since then. As I said before, I have no major organ involvement, so he has been able to keep my dose low. My system has seemed to stabilize since he has put me on this. I still take my methotrexate, just at a lower dose. The methotrexate and the Cellcept together seem to have kept most of my symptoms at bay. As for side effects, I havenít noticed any. Iíve been tolerating it very well. I also have a friend from our local support group though, who tried Cellcept about 6months after I started it. She couldnít take it, but it wasnít from side effects, it was because she had a bad allergic reaction to it.

Iím sorry, but I donít know if any of this will help you. My situation isnít really much like yours, you sound like youíve been having a much tougher time then me. Hope this helps you somewhat, good luck with your decision. Hope you feel better soon.
Marie

 
Old 05-26-2007, 11:14 PM   #8
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Post Re: Cellcept - has it worked for you??

Thank you Marie for your input!!! I appreciate all and any information that anyone has at this point, whether you think , it may or may not relate - gives me something to compare against either way. I've noticed my swelling has gotten worse, I've had some mild heart palpatations, pounding in my ears and 'harder' dizzy spells - but don't know if it is because I'm basically starting over, considering, and my body is having a field day, or if it's side effects from the Cellcept. I'm just so worried about deteriorating too fast before it gets a chance to work so that it ends up NOT working - it seems my doc is speeding up my dosage more then yours did and I'll be on double what you are currently on but it will take me 6 weeks to get there...in my case that's quite some time thinking about how aggressive mine is. I'm just really really worried about it not working fast enough or good enough vs. the Cytoxan although that really kicked me in the rear. Anyways, I still appreciate anymore input anyone may have - this really has me concerned. Thanks!!!

 
Old 05-28-2007, 02:56 PM   #9
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Ali04 HB User
Re: Cellcept - has it worked for you??

CELLCEPT WORKED FOR ME!!
I WAS ON 2000MG A DAY, AND MY KINDNEY FUNCTION WENT BACK TO NORMAL!!
of course pred was in there too. my insurance has a max allowance for the year, and the cost is high, so i ran through my insurance quickly. i had to come off it, and my flare has returned.
give it a try. it was a great drug with little to no side effects for me.
best wishes.

 
Old 05-28-2007, 10:54 PM   #10
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4boys HB User
Re: Cellcept - has it worked for you??

My son is just starting cellcept..He has Mpgn 1 kidney disease
Looking for any info.thanks

 
Old 06-03-2007, 02:06 AM   #11
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Re: Cellcept - has it worked for you??

My son is 18 yrs old with mpgn 1...he started cellcept 2 weeks ago..He is away right now but is feeling sick. Not sure if it cellcept or something else .He is away trying to work,,,but i don't think it's gonna work for him.
just wandering how everyone reacts to cellcept... thanks

 
Old 06-03-2007, 06:55 PM   #12
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raginstormcloud HB User
Re: Cellcept - has it worked for you??

I'm going on two weeks myself, and not sure either if it's the cellcept or just my lupus catching up with me, but I've been feeling sicker, more nauseous, more swelling, more achiness etc. I'm hoping beyond hope that it works, and I know I've got to give it time...for now I'm on 500mg and about to go up to 1000mg. We shall see I guess...
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Old 06-06-2008, 12:09 AM   #13
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Re: Cellcept - has it worked for you??

Hi,
I was actually cruising around looking for some information on CellCept side effects and thought I would chime in. I've been on Cellcept now for about 1 1/2 months and I started off at 1000 mg a day for two weeks then moved up to 2000 mg a day.I'll stay there for another month to see if I go up another 1000mg a day, I guess the max is 4000mg a day. I pretty quickly started feeling a little more energy but the other stuff is not coming around as quickly; I have a lot of CNS involvement and brain involvement as well as joint, muscle, and other things. My lupus is VERY aggressive so the biggest thing is to slow it down before it gets worse.

I was really pleasantly surprised that the Cellcept didn't really make me sick, I don't tolerate things well, I take my methotrexate by injection for example. My rheumie feels like cellcept is getting bad press about the recent study that they did and that it really has a lot of potential; I'm betting with him for now!
I have stayed on my other therapies, prednisone, methotrexate (1/2 dose) plaquenil and pain meds. Hopefully the prednisone will drop as I feel better

 
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