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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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elisaSS | @elisaonthego | May 29 1:01pm

Good luck. I have ILD and MYC has stabilized my lungs. Regarding GI issues, I was scoped and scanned and no inflammation. GI doc recommended low fiber diet. I'm not 100%, but very cognizant as to how much I eat. Also, since the onset of the disease, I eat much less processed foods, more organic, and much smaller meals, a little more frequently. It is really small changes for me,, but, definitely helps GI.

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ers12345 | @ers12345 | May 29 2:52pm
In reply to @elisaonthego "Good luck. I have ILD and MYC has stabilized my lungs. Regarding GI issues, I was..." + (show)
Profile picture for elisaSS @elisaonthego

Good luck. I have ILD and MYC has stabilized my lungs. Regarding GI issues, I was scoped and scanned and no inflammation. GI doc recommended low fiber diet. I'm not 100%, but very cognizant as to how much I eat. Also, since the onset of the disease, I eat much less processed foods, more organic, and much smaller meals, a little more frequently. It is really small changes for me,, but, definitely helps GI.

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@elisaonthego
Thank you! I hope it goes well for me as well, Thank you for the GI advice, really appreciate it!
I hope I’m one of the lucky ones that has minimal to no side effects and that it helps me feel better.
I’m glad MYC has helped you and has settled your lungs - when did you notice the difference.
I’m now looking forward to get it started.

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ers12345 | @ers12345 | May 29 3:12pm
In reply to @elisaonthego "Hello-I have been on Cell Cept for 15 months now. It has stabilized my skin and..." + (show)
Profile picture for elisaSS @elisaonthego

Hello-I have been on Cell Cept for 15 months now. It has stabilized my skin and lungs. I have had some GI issues, which I manage through diet. Cell Cept has not impacted my activities- tennis, golf, hiking. However my disease, antisynthetase syndrome, has impacted life.

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@elisaonthego
We have the same hobbies!!
How are you playing golf, tennis and hiking and avoiding UV? Are you just wearing high SPF 50 and covering your upper body?
I’m glad it’s hasn’t impacted your activities. especially when you’re as active as you are. I’m sorry your AS is impacting your life.
You have really made me feel better about starting.
Healthy lungs are more important.
Thank you ! Hope you have a good weekend

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elisaSS | @elisaonthego | May 29 4:15pm

Healthy lungs are the most important. Not to be a downer, but, the disease has impacted my life - tennis, pickleball, not playing. I'm still golfing, but have to ride in a cart (and drive to ball..lol). My legs are a problem. But, no one wants me to stop MYC because my lungs are doing well, as is skin. So, need to figure muscle issues. I live in AZ, so, sun is an issue- i do always wear sunscreen, but, impossible not to go outside (nor do I choose to give it up.) Skin is pretty good with MYC, thankfully. Key me posted on how it's going🤞🏻

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ers12345 | @ers12345 | May 29 4:50pm
In reply to @elisaonthego "Healthy lungs are the most important. Not to be a downer, but, the disease has impacted..." + (show)
Profile picture for elisaSS @elisaonthego

Healthy lungs are the most important. Not to be a downer, but, the disease has impacted my life - tennis, pickleball, not playing. I'm still golfing, but have to ride in a cart (and drive to ball..lol). My legs are a problem. But, no one wants me to stop MYC because my lungs are doing well, as is skin. So, need to figure muscle issues. I live in AZ, so, sun is an issue- i do always wear sunscreen, but, impossible not to go outside (nor do I choose to give it up.) Skin is pretty good with MYC, thankfully. Key me posted on how it's going🤞🏻

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@elisaonthego I am so sorry to hear about your muscles. That has to be tough and I hope they can figure things out for you.
I’m glad to hear you are playing golf, keep it up as long as you can. It’s also good for the head and the heart, I’m
In ireland so the sun is not as strong which is a plus.
I will keep you posted and you do the same.

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elisaSS | @elisaonthego | May 29 5:30pm
In reply to @ers12345 "@elisaonthego I am so sorry to hear about your muscles. That has to be tough and..." + (show)
Profile picture for ers12345 @ers12345

@elisaonthego I am so sorry to hear about your muscles. That has to be tough and I hope they can figure things out for you.
I’m glad to hear you are playing golf, keep it up as long as you can. It’s also good for the head and the heart, I’m
In ireland so the sun is not as strong which is a plus.
I will keep you posted and you do the same.

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🤞🏻🤗

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pgf | @pgf | May 29 8:07pm
In reply to @ers12345 "Hello, I am new to the community. My name is Liz, It’s nice to meet you..." + (show)
Profile picture for ers12345 @ers12345

Hello, I am new to the community.
My name is Liz,
It’s nice to meet you all. I am starting CellCept in two weeks and I’m nervous, especially with the sun sensitivity . I am very active and love to be outdoors playing g golf, tennis, cycling, skiing, hiking, or hanging out on a beach, and traveling.. All things I will not be able to do once I start a cellcept.
I have to change my lifestyle
I am being but on this medication because I have a lung inflammation that is not diagnosed- When it flares up, I can’t breathe very well and I cough and can barely move without gasping for air. I’ve had two flare up in 3 years, my recent one was last September and the only thing that would help are steroids. I have been on steroids ever since and I’m tapering away from them successfully-I am currently at 7.5 mg but my respiratory doctor wants me on CellCept to control and stabilize the inflammation and avoid scaring (fibrosis. Over time, I will completely be off steroids. Although I am nervous I am grateful I will have some relief and I am hoping my dose is low enough that side effects are not as bad.

Is anyone else on CellCept / Mycophenolate for lung inflammation, I would love to hear from you- They are starting me with 500 mg for the first two weeks and moving onto 1000 mg after that.

I am hoping my lungs will stabilize and I can get off the medication in about 2-3 years or get onto another medication that doesn’t have as many side effects as a maintenance.
I am hoping to get I touch with people that I can talk to, for support.

How much of your life style changes on this medication.

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@ers12345

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pgf | @pgf | May 29 8:09pm

I am diagnosed with COP and was on prednisone for 3 years. Now my dr has put me on Myfortic which is really Cellcept but easier on the stomach.
I am on 1440 mg a day. Dealing ok with all the side effects except the constant fatigue.

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ebjj4health | @ebjj4health | May 29 10:12pm
In reply to @ers12345 "Hello, I am new to the community. My name is Liz, It’s nice to meet you..." + (show)
Profile picture for ers12345 @ers12345

Hello, I am new to the community.
My name is Liz,
It’s nice to meet you all. I am starting CellCept in two weeks and I’m nervous, especially with the sun sensitivity . I am very active and love to be outdoors playing g golf, tennis, cycling, skiing, hiking, or hanging out on a beach, and traveling.. All things I will not be able to do once I start a cellcept.
I have to change my lifestyle
I am being but on this medication because I have a lung inflammation that is not diagnosed- When it flares up, I can’t breathe very well and I cough and can barely move without gasping for air. I’ve had two flare up in 3 years, my recent one was last September and the only thing that would help are steroids. I have been on steroids ever since and I’m tapering away from them successfully-I am currently at 7.5 mg but my respiratory doctor wants me on CellCept to control and stabilize the inflammation and avoid scaring (fibrosis. Over time, I will completely be off steroids. Although I am nervous I am grateful I will have some relief and I am hoping my dose is low enough that side effects are not as bad.

Is anyone else on CellCept / Mycophenolate for lung inflammation, I would love to hear from you- They are starting me with 500 mg for the first two weeks and moving onto 1000 mg after that.

I am hoping my lungs will stabilize and I can get off the medication in about 2-3 years or get onto another medication that doesn’t have as many side effects as a maintenance.
I am hoping to get I touch with people that I can talk to, for support.

How much of your life style changes on this medication.

Jump to this post

@ers12345
I have been on Cellcept for a couple of months, not for lung issues but for an autoimmune disease. I have not had any side effects and continue my normal lifestyle, walking everyday and still going to the pool. Just wear a hat and good sunscreen. Good Luck!

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jrkittel | @jrkittel | May 30 7:43am
In reply to @ers12345 "Hello, I am new to the community. My name is Liz, It’s nice to meet you..." + (show)
Profile picture for ers12345 @ers12345

Hello, I am new to the community.
My name is Liz,
It’s nice to meet you all. I am starting CellCept in two weeks and I’m nervous, especially with the sun sensitivity . I am very active and love to be outdoors playing g golf, tennis, cycling, skiing, hiking, or hanging out on a beach, and traveling.. All things I will not be able to do once I start a cellcept.
I have to change my lifestyle
I am being but on this medication because I have a lung inflammation that is not diagnosed- When it flares up, I can’t breathe very well and I cough and can barely move without gasping for air. I’ve had two flare up in 3 years, my recent one was last September and the only thing that would help are steroids. I have been on steroids ever since and I’m tapering away from them successfully-I am currently at 7.5 mg but my respiratory doctor wants me on CellCept to control and stabilize the inflammation and avoid scaring (fibrosis. Over time, I will completely be off steroids. Although I am nervous I am grateful I will have some relief and I am hoping my dose is low enough that side effects are not as bad.

Is anyone else on CellCept / Mycophenolate for lung inflammation, I would love to hear from you- They are starting me with 500 mg for the first two weeks and moving onto 1000 mg after that.

I am hoping my lungs will stabilize and I can get off the medication in about 2-3 years or get onto another medication that doesn’t have as many side effects as a maintenance.
I am hoping to get I touch with people that I can talk to, for support.

How much of your life style changes on this medication.

Jump to this post

@ers12345
I'm on CellCept to control peripheral and autonomic neuropathy caused by Sjogren's. It was phased in over several months starting in 10/2024 to 2,000 mg per day. Sjogren's can also scar the lungs but fortunately the damage is minimal at this point. I am also active and outdoors in the north during the warm months and in Arizona (where the sun shines 95% of the time) over the winter. I use SPF 30 or SPF 55 if I'm going to be outside for more than a half hour and try to do the outdoor activities early or late in the day. I had a basal cell carcinoma removed, but that could have been caused by the many years of not protecting my skin prior to the CellCept. You should do what you love to do, but be vigilant for any changes in your skin. See a dermatologist annually for a full body check. The list of CellCept side effects is scary and long, but I haven't felt any different while on the medication. I hope you recover and can go off the CellCept.

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