CellCept

Posted by pamelalaa @pamelalaa, Jul 31, 2024

I have a very complex situation but really wondering if anyone can share their experience using this drug. I’m dx’d with multiple autoimmune diseases and maybe a paranroplastic syndrome. Lots of trouble getting care but hopefully on the right track to stabilize for some surgery. This med is being suggested in lieu of IVIG which Medicare wouldn’t cover. Would love to hear about any first hand experiences with CellCept.

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Profile picture for ers12345 @ers12345

@becsbuddy my doctor never said anything about a strict schedule, just to have it twice with my meals (breakfast and dinner).

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@ers12345 I was told to take Cellcept twice a day, 1-1/2 hours after I eat.
Looking for advice on a related topic. I'm concerned about the combination of meds and supplements I take together, the time I take the meds, possible drug interactions, and foods to avoid. Is there a service that provides a medication review? Registered Dietitians don't seem to be a fit.
Suggestions?

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Profile picture for texasblooms @texasblooms

@ers12345 I was told to take Cellcept twice a day, 1-1/2 hours after I eat.
Looking for advice on a related topic. I'm concerned about the combination of meds and supplements I take together, the time I take the meds, possible drug interactions, and foods to avoid. Is there a service that provides a medication review? Registered Dietitians don't seem to be a fit.
Suggestions?

Jump to this post

@texasblooms i was told to have medication twice a day with my meal to avoid GI issues. So with breakfast and dinner.
No list of food provided for me but I looked online and no raw food, like sushi or cured meats from a deli or unpasteurized cheeses / milk. Avoid spicy foods as well and you can drink alcohol 4 units. If you know anything else, Please share

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Profile picture for ers12345 @ers12345

@texasblooms i was told to have medication twice a day with my meal to avoid GI issues. So with breakfast and dinner.
No list of food provided for me but I looked online and no raw food, like sushi or cured meats from a deli or unpasteurized cheeses / milk. Avoid spicy foods as well and you can drink alcohol 4 units. If you know anything else, Please share

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@ers12345
I was told no food take 1 hour before ou eat or 2 hours after you eat. That is also the directions from my pharmacy.
I have been on it a total of 26 days and 2 weeks into it I went from 500 to 1000 mg.
I am waiting to feel a physical difference..... I guess its very slow acting . Can any one confirm this? And how do other people take this drug. W/ or WO food?

REPLY
Profile picture for leslyb @leslyb

@ers12345
I was told no food take 1 hour before ou eat or 2 hours after you eat. That is also the directions from my pharmacy.
I have been on it a total of 26 days and 2 weeks into it I went from 500 to 1000 mg.
I am waiting to feel a physical difference..... I guess its very slow acting . Can any one confirm this? And how do other people take this drug. W/ or WO food?

Jump to this post

@leslyb I was given the same dosing instructions. Fortunately I don't have GI issues, this was a concern because often it is not tolerated.
I have been on Cellcept for three years, started at 500 and gradually increased to 2000. My DR said it can take three to six months to see improvement. It's a slow process and an additional medication was later added to my regime.

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Profile picture for texasblooms @texasblooms

@leslyb I was given the same dosing instructions. Fortunately I don't have GI issues, this was a concern because often it is not tolerated.
I have been on Cellcept for three years, started at 500 and gradually increased to 2000. My DR said it can take three to six months to see improvement. It's a slow process and an additional medication was later added to my regime.

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@texasblooms out of curiosity why are you on CellCept?

I started with 500 mg twice a day and in three weeks I’ll move up to 1000 mg - twice a day.
I am on it for lung inflammation- I am very stable at the moment, No symptoms other then my DLCO’s being at 59 and the doctor would like to avoid another flare up which is why I started so it’s hard to know how I’ll notice any improvements other then my next lung function test in three months time.

Did your doctor say you’ll be on the medication for life or will you see how you get on?
We are taking it day by day,
Month by month, year by year.

Hope that helps and best of luck.

REPLY
Profile picture for ers12345 @ers12345

@texasblooms out of curiosity why are you on CellCept?

I started with 500 mg twice a day and in three weeks I’ll move up to 1000 mg - twice a day.
I am on it for lung inflammation- I am very stable at the moment, No symptoms other then my DLCO’s being at 59 and the doctor would like to avoid another flare up which is why I started so it’s hard to know how I’ll notice any improvements other then my next lung function test in three months time.

Did your doctor say you’ll be on the medication for life or will you see how you get on?
We are taking it day by day,
Month by month, year by year.

Hope that helps and best of luck.

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@ers12345 So glad to hear you are stable. I haven't been diagnosed with lung disease. I believe I'm taking Cellcept for inflammation. I will take Plaquenil the rest of my life but Cellcept is TBD. I believe when an effective infusion is found Cellcept may be stopped or reduced.

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Profile picture for leslyb @leslyb

@ers12345
I was told no food take 1 hour before ou eat or 2 hours after you eat. That is also the directions from my pharmacy.
I have been on it a total of 26 days and 2 weeks into it I went from 500 to 1000 mg.
I am waiting to feel a physical difference..... I guess its very slow acting . Can any one confirm this? And how do other people take this drug. W/ or WO food?

Jump to this post

@leslyb
I have been on 3000mg of MYC for ~15 months. I follow directions and dr. Which said better absorption without food, so, 1500mg 2x per day, 1 hour before food Or 2 hours after food. Yes, some digestive issues which I mostly manage with diet. ... Small meals, reduce processed food, low fiber .. All helps. Lungs and skin stable now.

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Profile picture for elisaSS @elisaonthego

@leslyb
I have been on 3000mg of MYC for ~15 months. I follow directions and dr. Which said better absorption without food, so, 1500mg 2x per day, 1 hour before food Or 2 hours after food. Yes, some digestive issues which I mostly manage with diet. ... Small meals, reduce processed food, low fiber .. All helps. Lungs and skin stable now.

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@elisaonthego

MYC at 3000mg is a high dose. Have you noticed any fatigue, dizziness, or palpitations?

I have started Myfortic which is mycophenolic acid, 500 mg twice a day. It comes as enteric coated tablet, so no GI issues have been noted. So far, I have noticed some fatigue with occasional dizziness and brain fog, and also some palpitations that feels like irregular heartbeat.
Have you noticed similar symptoms with mycophenolate mofetil? Any toxicity outside of GI?

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Profile picture for Alta Net @altabiznet

@elisaonthego

MYC at 3000mg is a high dose. Have you noticed any fatigue, dizziness, or palpitations?

I have started Myfortic which is mycophenolic acid, 500 mg twice a day. It comes as enteric coated tablet, so no GI issues have been noted. So far, I have noticed some fatigue with occasional dizziness and brain fog, and also some palpitations that feels like irregular heartbeat.
Have you noticed similar symptoms with mycophenolate mofetil? Any toxicity outside of GI?

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@altabiznet
Just GI issues which are sporadic and not too bad. I still have muscle fatigue, which docs don't feel is myositis. Lungs doing very well, which was most concerning. All my labs and other tests are stable / normal. Afraid to change course at this time

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