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Old 07-20-2014, 11:49 AM #1
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Default Dr. wants me off Cellcept for 3 months

Dr. wants me off Cellcept for a knee replacement, how long before antibodies multiply to the levels that got me into trouble to start with, Doctor wants me off Cellcept 2 months before knee replacement and begin 1 month after operation, I don,t believe I can make it that long of time without being in trouble.
Been on 2000 mg of Cellcept daily for MG 9 years.
Steve
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Old 07-20-2014, 02:06 PM #2
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I have no idea how long it takes for symptoms to come back. I would love to know the answer. I have never tried to get off of cellcept. I hope you do ok.
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Old 07-20-2014, 04:23 PM #3
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Difficult...I understand the reasoning (like higher risk of infections) and who'll say you still need the cellcept to control your MG? Maybe you don't need it anymore...

But, to me it seems like a bit of a risk. Do you take any other medications for your MG? And does the doc want you to stop those too?
Have you ever tried to see what happens if you take less cellcept (like 1000 mg a day)? How are your symptoms now with the cellcept?

Did they offer to take something instead in the meantime, like ivig?

Okay, loads of questions. I think this is something you really have to talk through with your neurologist. No other doc (like a doc to order the knee replacement) can make such huge desicions about this.

I believe CellCept has a half life around 17 - 18 hours, and based on the fact you will get your symptoms back in a short time after a good antibody cleansing with ivig, I think 3 months off cellcept seems a bit of a risk. Especially combined with stress of an operation, and possible other meds to trigger MG symptoms like painkillers and relaxing meds.
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Old 07-20-2014, 06:50 PM #4
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Originally Posted by Ravenclaw View Post
Difficult...I understand the reasoning (like higher risk of infections) and who'll say you still need the cellcept to control your MG? Maybe you don't need it anymore...

But, to me it seems like a bit of a risk. Do you take any other medications for your MG? And does the doc want you to stop those too?
Have you ever tried to see what happens if you take less cellcept (like 1000 mg a day)? How are your symptoms now with the cellcept?

Did they offer to take something instead in the meantime, like ivig?

Okay, loads of questions. I think this is something you really have to talk through with your neurologist. No other doc (like a doc to order the knee replacement) can make such huge desicions about this.

I believe CellCept has a half life around 17 - 18 hours, and based on the fact you will get your symptoms back in a short time after a good antibody cleansing with ivig, I think 3 months off cellcept seems a bit of a risk. Especially combined with stress of an operation, and possible other meds to trigger MG symptoms like painkillers and relaxing meds.
Hi, I,ve weened myself back to 1250 mg's a day now from 2000 mg's, over 18 months ago, actually i feel better now, more energy, but still have difficult speeding and swallowing when tired or under stress.
My neurologist thinks this is the way to go after consulting two surgeons, I disagree, I feel Ivig is the way to go a month before and a month after knee replacement. Going to have it done Jan, 2015
I called Genetech the other day , they said Cellcept has 50% life left after 24 hours, the rest of Cellcept life gone 5 days later in other words 6 or seven days Cellcept is out of your system.
Will keep informed.
Steve
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Old 07-20-2014, 08:57 PM #5
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Hi, Steve. Welcome.

The issue that most knee replacement surgeons are concerned about is infection. Cellcept might be out of your system in a relatively short period of time, but the immunosuppressive effect won't be.

Have your doctors periodically checked your blood cell counts and liver/kidney function?

Has anyone discussed using antibiotics before and after surgery, such as a regular dose before and after and then following up with a longer, low dose?

Sometimes, doctors are the ones who need reassuring. They don't want to hurt patients and might be afraid of doing so. And sometimes that gets in the way of them doing something instead of thinking about options that might help.

How have you historically been with healing? I mean, if you get a cut, do you heal quickly? I know the Cellcept can interfere with that, but it does help if you were a good healer to begin with.

You can also do things such as taking vitamin C daily, having enough fish, getting plenty of sleep (which in and of itself is healing), etc. There are many studies showing that those, and other measures, can help with healing.

You sound as though you're a good advocate for yourself and want a sensible solution. Second opinions are useful, too. Maybe you could speak to an internist or an infectious disease doctor about this.

The hardest part of a knee replacement is the necessary therapy afterwards. And the pain, and the pain meds that can make MG worse. It might help if that's done in an in-patient care facility for the first couple of weeks. They can keep an eye on your knee and on your overall health. Post-op therapy is crucial to the success of a knee replacement.

I hope the surgery goes great. It might take more finesse to make it successful, but it isn't impossible!

Annie
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