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Old 06-25-2007, 08:15 PM   #1
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Cellcept

My doctor has changed my medication to cellcept. Anyone here take it and how is it working for you? Side effects? I have been taking MTX for almost a year now and it wasn't working well and I am still getting worse so I had the choice of Cellcept of Cytoxin. The Cytoxin sounded much more toxic so I chose Cellcept. I still may end up taking the Cytoxin anyway if the Cellcept doesnt work but the Cellcept seemed to be the lesser of evils. Any input would be greatly appreciated.


Erin
Dallas TX

 
Old 07-03-2007, 04:34 PM   #2
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Re: Cellcept

I've been on cellcept going on 6 weeks now...and about to go up to my final dose of 2000mg (2g). I started off at 500mg, increasing 500mg every two weeks. At this point I'm suffering a lot of side effects, my levels haven't improved, some have gone down and not in the good way, but that was a chance my doctor said we may have to take despite the risks...I was on cytoxin PRIOR to this....and I didn't respond until I got an almost lethal dose of 2900mg of that...so at this point it's kind of like taking one step forward and three back for me. My doctor definatley preferred the cytoxin...but it was taking too much for me to respond to it...on the contrary he didn't care much for the cellcept because he said it wasn't as guaranteed or proven as the cytoxin...and he told me there was a chance it wouldn't work. I can't say at this point, I still have to go up that last bit and see...but if not, I'll end up back on the cytoxin, God help me. I wish you the best - I know it works different for everyone, and just because it doesn't/isn't working for me doesn't mean it wont for you. Good luck, and I wish you the best.
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Old 07-04-2007, 07:00 AM   #3
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Re: Cellcept

Quote:
Originally Posted by raginstormcloud View Post
I've been on cellcept going on 6 weeks now...and about to go up to my final dose of 2000mg (2g). I started off at 500mg, increasing 500mg every two weeks. At this point I'm suffering a lot of side effects, my levels haven't improved, some have gone down and not in the good way, but that was a chance my doctor said we may have to take despite the risks...I was on cytoxin PRIOR to this....and I didn't respond until I got an almost lethal dose of 2900mg of that...so at this point it's kind of like taking one step forward and three back for me. My doctor definatley preferred the cytoxin...but it was taking too much for me to respond to it...on the contrary he didn't care much for the cellcept because he said it wasn't as guaranteed or proven as the cytoxin...and he told me there was a chance it wouldn't work. I can't say at this point, I still have to go up that last bit and see...but if not, I'll end up back on the cytoxin, God help me. I wish you the best - I know it works different for everyone, and just because it doesn't/isn't working for me doesn't mean it wont for you. Good luck, and I wish you the best.
My target dosage is the 2000 too. I am taking the 500mg a day, then I go up 500 mg each week till I am at 2 2xs a day. Are you taking it for nephritis. I dont think my kidneys are that bad atleast I don't have many symptoms. Just my urine. But my CNS symptoms are getting much worse. He said that cellcept has been known to help with those too. We shall see I guess. My dr said my CNS symptoms are worse but the funny thing is to me they arent. When all of this started they were so much worse. I mean I literally could not walk and could barely use my arms. I had bilateral optic neuritis and tranverse myelitis so to me that was much worse than now. Now I am having the vision problems and my eyes are apparantly shaking when I move them. I am having difficulty hearing and swallowing. The swallowing is definately the biggest pain in the butt!

It is kind of funny though. I went from relatively healthy to really messed up really fast when this started so it could also be that I have gotten so use to being messed up that it doesnt seem as bad. Does that make a lick of sense to anyone else???

I use to be vigilant about getting copies of my test results and pouring over them looking for changes and such. But I have actually lightened up on that because I dont want my mind to say to my body, "hey, you are doing worse!" I have to keep going no matter what, so I guess I just need my mind to be in the dark a bit and keep pushing me on.

Anyway, thank you for the response. Hopefully it will work for you. What kind of side effects have you experienced on them?

Erin
Dallas TX

 
Old 07-04-2007, 10:17 PM   #4
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Re: Cellcept

Yes, I'm stage IV Nephritis...mainly the side effects of nausea, the big 'D' lol, gastrointestinal problems, but then again, I'm taking so many different things it's hard to say what is doing what to me...mainly it's crashing my immune system like the cytoxin did (my WBC dropped to below 500 on that) and I'm severely lymphopenic with my monocytes and basophils virtually none existant. I was in neutropenic confinement for over a week after crashing on the cytoxin - that's when I got switched to the cellcept. It's just been a pain overall...and believe me I understand about you get so used to feeling bad you just, well, just get used to it, blah.
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Old 07-07-2007, 02:09 PM   #5
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Re: Cellcept

I am really hoping that I don't end up with that particular side effect (crashed immune system) When I was taking the MTX I ended up with the shingles ( no fun at all! ). I work in an office full of cubicles so it seems like anytime anyone gets sick, I end up with it too. I have been tempted more times than you know to wear a mask at work. I just cant bring myself to do it. It is bad enough when I am limping all over the office and embarrasing too. I don't need any more flags being waved that I have an illness. I try to keep that out of the forefront as much as I can.

This is apparantly not used much since no one else has replied and the people on this board are usually pretty quick to help out with information. I guess it is just me and you in this boat.

Erin
Dallas TX

Last edited by ErinS64; 07-07-2007 at 02:11 PM. Reason: amended

 
Old 07-07-2007, 02:58 PM   #6
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Re: Cellcept

Quote:
Originally Posted by EStevens64 View Post
I am really hoping that I don't end up with that particular side effect (crashed immune system) When I was taking the MTX I ended up with the shingles ( no fun at all! ). I work in an office full of cubicles so it seems like anytime anyone gets sick, I end up with it too. I have been tempted more times than you know to wear a mask at work. I just cant bring myself to do it. It is bad enough when I am limping all over the office and embarrasing too. I don't need any more flags being waved that I have an illness. I try to keep that out of the forefront as much as I can.

This is apparantly not used much since no one else has replied and the people on this board are usually pretty quick to help out with information. I guess it is just me and you in this boat.

Erin
Dallas TX
That may be so because I've asked about it before...and I think that's why my doctor was more concerned...I ended up with Shingles on the Cytoxin right before the first crash. I've actually been putting myself in positions trying to make myself more immune - I've got 5 kids so avoiding germs is next to impossible - so I've done LESS to protect myself from them, and even though I'm doing WORSE, I'm doing BETTER as far as not getting sick besides the usual feeling yucky. I don't know, I could be wrong, but since I've decided to just live and let live I'm doing better NOT getting 'sick' as far as 'protecting' myself...it's wierd. Maybe it's attitude, but for now, I'm just taking it a day at a time.
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Old 07-08-2007, 11:25 PM   #7
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Re: Cellcept or Plaquenil or Cytoxin

I was reading your posts above and I think it was EStevens that I read and felt that she had a lot of the same symptoms that I have. I'm on plaquenil now and have taken cytoxin for 6 months.. successfully. But 2 years later, I need to take the plaquenil.Other than a high sed rate and other problems that were not totally identifiable. I had Myelopathy, I guessed it was transverse myelitis, but was corrected to myelopathy at about the c4-5 section. Making it difficult for me to walk very far and ending up with lower back pain.

My question, is to EStevens64: Did you say you had trouble walking in the office and is it from the myelitis? I would like to know more people who have this and how they are handling it. Also what aids if any do you need to help you through the day. I have a rolling walker.... I'm too young for this. I feel trapped in my own home sometimes.

thanks for listening

Kathryn
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Old 07-09-2007, 06:06 AM   #8
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Re: Cellcept or Plaquenil or Cytoxin

Quote:
Originally Posted by Kathryn View Post
I was reading your posts above and I think it was EStevens that I read and felt that she had a lot of the same symptoms that I have. I'm on plaquenil now and have taken cytoxin for 6 months.. successfully. But 2 years later, I need to take the plaquenil.Other than a high sed rate and other problems that were not totally identifiable. I had Myelopathy, I guessed it was transverse myelitis, but was corrected to myelopathy at about the c4-5 section. Making it difficult for me to walk very far and ending up with lower back pain.

My question, is to EStevens64: Did you say you had trouble walking in the office and is it from the myelitis? I would like to know more people who have this and how they are handling it. Also what aids if any do you need to help you through the day. I have a rolling walker.... I'm too young for this. I feel trapped in my own home sometimes.

thanks for listening

Kathryn
Kathryn,

The called it transverse mylelitis (sp). I also had bilateral optic neuritis. I was legally blind in my left eye 20/300 vision and 20/100 in my right. My left eye did improve to 20/80 (at its best) and 20/50 in my right but it still comes and goes. I was treated with iv solumedrol which did get me out of crisis but didnt quite do it so they treated me for a year with IVIG (which is very expensive and hard to get covered under your insurance cost of about 6,000 per treatment) There were a few doctors that referred to it as Devic's Disease of something similar. I did get better and can now walk but I am still fighting it pretty regularly. The hard part was my arms didnt work well either so the cane and walker were not much of a help.

I am pretty stubborn and while the kind people at the local supermarkets have offerred more than once to give me the little cars, I have refused....lol...dont even want to go there. I keep a cane in my car at all times just in case and I use that and the walls of the cubicals for support. I have some days that I have just a really bad limp and then others where I am literally dragging my legs around. I can only describe it as my feet being cinderblocks and legs being spagetti and I have to fight to control them. My myelitis or swelling in the spinal cord was also in my cervical spine too. I still have peripheral neuropathy as well.. At first they believed it be MS, but later diagnosed lupus. I also have signs of Sjogrens (dry eyes and mouth and swollen pitotid gland) but I haven't really done the work to diagnose that. I have the dry eye test and the ROSSA antibody but they also like the lip biopsy to firm it up and frankly I am ologist out right now. There isnt alot they can do for Sjogrens and I already have the eye drops.

I understand about being too young though. While I am a grandmother I am also only 43 years old. What was bad is this all hit right at my 40th birthday so it seemed like I turned 40 and fell apart! 3 years later it is still a struggle but I am getting as good of a handle on it as I can and pushing as hard as I can.

The funny thing is the numbness can be a blessing. Because after it goes the pain is a real B****! It hurts for my clothes to even touch me. I feel bruised from head to foot.

All I can tell you is it usually comes and goes so I just keep prepared. My coworkers and boss can tell when I am having a bad day and they are VERY understanding ( I am truly blessed there) We have all worked together for 5 years now and they knew me before and when all of this was happening so have gotten use to it.

I don't think I helped you much but atleast you know you arent alone. This site is really good for that. I am now trying cellcept and we shall see how well it works. I havent taken the Cytoxan. It is really my last resort. That stuff just sounds so toxic when you read about it. The IVIG really helped alot though. I really think had they not used that I would be a blind cripple.

Erin
Dallas TX

 
Old 07-09-2007, 10:10 AM   #9
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Re: Cellcept

Erin, I hope that the cellcept helps you. I hope it helps sooner than later.

I have had optic neuritis in both eyes, which is unusual for Lupus patients, but, I don't see why. It's part of one of the systems in our body. I think I went on for 2 to 3 years with come and go Optic neuritis. It got to the point I would go to the local ER affiliated with my insurance company and they would give me my solumedrol in a room off to the side. I've had some doozies of Nervous System disorders. One was Guillain Barre Syndrome. I could not go straight home after the hospital stay, I had to go to a rehab center and live there for several weeks until they got me up and walking and using my hands better.

We are having very warm weather here in SE Michigan 95 degrees. If you are having hot weather, stay cool and take cooler showers for the burning neuropathy. I too had it and it burned like a blow torch on my skin, even when the wind blew against it. I inadvertently one day started to feel the nerves in my leg go into burning mode, I had a garden hose in my hand and I just started running the cool water over the burning part. Wow, did that cool it down. Oh what terrible symptoms.

take care,

Kathryn
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