Anyone on Mycophenolate Mofetil (CellCept, Myfortic

[Mark maron]

Hi there..OKAY lets brake this down, YES I am on mycrophenalte due to some issues, mold, aspergillius, I am 14 months post transplant and the drug is perfectly fine.. You are on barely any 02 at all., I was on 15ltrs 24/7 and diagnosed in 2016 and transplanted Dec 2023. Now the 2 year bull shit,,, That is exactly what it is,, bullshit, Your ill live longer than 2 years doing nothing and that dr of yours should have him license revoked for even saying that,, Those are foolish worthless, and brainless statistics. IGNORE them and your life will be a heck of a lot better and I would find another Dr also. . Ho the can say that a person on 2lts of 02 has 2 years is absurd and it infuriates me and many of us survivors when we hear crap like that. I have friends that were on 50 and 60lts of 02 and are still alive. You will do fine on the meds and they will kick it out of you but get another opinion for sure…We are survivors and dont curl up and die because some hack dr tells you that…..Good luck and keep me informed….Mark

[luann]

Thank you Mark! Your words make me feel much better!

[JSR]

I was diagnosed with Interstitial Lung Disease linked to schleroderma about 2.5 years ago. It was caught early and I was put on Mycophenolate immediately to control my body’s over active immune response. My disease has remained stable during that period. I use 2 liters of O2 with my cpap at night but do not need it during the day unless I am at high altitude. I have tolerated the medication very well. I can take a brisk 45 minute walk each day. I am living a normal life. I highly recommend getting pulmonary therapy which teaches you how to breath properly both at rest and during activity. It increases your fitness and really makes a difference. Do not let that doctor take away your hope. Push back and get another doctor if necessary.

[luann]

Thank you!

[Judie McDonald]

I have been taking Mycophenolate Mofetil for about 1 year, started slowly from 500mg daily. Now taking 1000 mg in morning, 1000 mg in evening. In addition I take 10 mg Prednisone daily. My diagnosis came in 2017. Hypersensitivity Pneumonitis.

I have regular CT Lung scans and pulmonary function tests. Will repeat in March.

Had been doing ok, last few months more fatigue and shortness of breath. I will see my wonderful pulmonologist in March after scan.

Initially I experienced some nausea and upset stomach from Mycophenolate so I took it after I had breakfast. This helped greatly.

Not on oxygen yet.

I wish you the best Luann.

This is a challenging disease but we do the best we can. I like to say, ” we and our doctors will do the possible, God will do the rest”.

[luann]

Oh thank you so much for your words of encouragement!

[1940]

I am not on M/M and will investigate for my possible use. However the current standard if care is OFEV if you can tolerate it. OFEV has a bad reputation for intestinal distress so that some people will not take it.

Part of the problem is that most Pulmonary Doctors are not dietitians (nor am I). OFEV is a real irritant to your system. I have found that taking a plant based protein supplement of 20 grams and OFEV (150 mg) before breakfast (cereal and fruit) along with taking the nightly 150 mg OFEV dose with a good amount of protein in the meal (fish, chicken, beef, pork) staves off the upset stomach and diarrhea. It seems that the protein buffers the OFEV and you can lead a normal life with it. But, no coffee or caffeine, nor raw peppers and onions, easy on the fats and sweets. Except the coffee, which I miss terribly, it is a pretty normal diet.

I an 85 years old, have been on OFEV since March of 2023, diagnosed on October 2022. I use 2 liters of O2 at night and 2 liters only during exercise or manual work during the day. Otherwise I am off O2. I tire easily but at 85 I am ahead of most of my peers in energy.

[luann]

Wow 85! I’m impressed! Thank you for the info and I wish you health and happiness.

[Vian.]

I’m in the same boat as you. 84 years old and on Ofev ( 150 mg morning 150 mg night) at it about 5 years now. My lung doctor put me on Ofev the first day. It has really helped me.

[Adele Friedman]

I’ve been on it since Jan. 2022. Greatly reduced inflammation in my lungs. Totally agree about the two year prognosis likely being bullshit. I was told my PF was progressive when first diagnosed by emergency doc. It hasn’t been. Several of the PFT functions are better thanks to mycophenolate and weight loss. What kind of a doc are you seeing? It’s important to see not only a pulmonologist, but a pulmonologist who specializes in ILD.

[luann]

Thank you for your encouragement!

[papag]

Hi Luann,

Regarding mycophenolate tolerance, I’m on 1500 mg twice a day. I do experience occasional stomach issues, and I’m confident that everyone taking it has a slightly different experience. (With my doctor’s monitoring, I stopped it for six months and had scans. Normally, my progression has been slow, but after stopping it, the fibrosis worsened.)

Have you seen a pulmonary doctor who specializes in ILD? That’s the most important step. I’ve spoken with many medical professionals, and their views on the disease and its prognosis vary widely. I was diagnosed 11 years ago and manage Mycophenolate and Ofev daily. The combination seems to be slowing the progression.

If possible, try to find a hospital with a dedicated ILD clinic—they are your best allies.

Wishing you well

[Celia]

hi!

I am on it. Worked up to 2000 per day (1K am and 1K pm).
I find that taking a fiber supplement helps my mild GI symptoms with it-obviously it has to be timed with the meds/ all the other stuff. This med is taken on en empty stomach. No problems really.

My dx is interstitial lung disease and RA.

I feel like it helps my RA, I have no idea about the lungs, really.

I also take 10 mg prednisone and Orencia inj (for RA). I am on LTOT. I need 6L of O2 with activity, lower rates at rest. But my lungs have gotten a lot worse over the last month or so, so we will see what’s next.

Mental stuff: as much as possible, chose docs that know your condition, and understand that no one can predict how long any of us will live. Sometimes we want to know. Sometimes we don’t, but an overly negative projection my not be helpful -or accurate. Depression and discouragement are real too and not helpful.

-Monica

[luann]

I appreciate your info 🤗

[Elaine]

Hello – I was on this medicine and originally my Interstitial Lung disease caused PF from an overactive immune system. I started off on Prenisone and your drug and I kept going downhill. I went to the Mayo Clinic in Jacksonville for second opinions and I was put on Rituxinab its an infusion that is given four times a year and they then weaned me of every other drug as they were slowly poisoning me – once off the other drugs my health has been leveled off now for four years which we though was unlikely. The Rituxinab is an anti inflammatory and I am cautiously optimistic- originally I was very sick and the drs thought maybe I needed to be on the transplant list- now I am in the fifth year of dealing with this – at my last check up they mentioned if I continue like this it could still be years before talking about a lung transplant.

I highly recommend getting a second opinion – my drs at Johns Hopkins just were putting a band aid on me versus Mayo that looked under every rock and tested me for so many things and then came up with a game plan.

Good luck- try to think positively I know it’s hard but please self advocate for yourself there are doctors that will try everything for you.

Hugs

[luann]

Thank you so much! 🤗

[Buddy38]

I am 86 !! I found out I had IPF in 2020. I was told that I have had it since 2015. I took OFEV for about 2 years. I could not take it anymore. It had me almost bedridden. I was on oxygen for about two years. I weaned myself off of oxygen. I manage my IPF on my on. I know my limits!! I hope I can make 90!!!

[luann]

Thank you! Wishing you many more years! 🤗

[Prabir K Bagchi]

I have been on MM(Myfortic Acid/ Mycophenolate) 180 mg twice daily for four years. I am five years after single lung transplant at the University of Maryland Medical Center, Baltimore. Cellcept was giving me minor stomach problems. It was changed to Mycophenolate some 4+ years ago. It has not given me any problems so far. Good luck.

Prabir Bagchi

[luann]

Thank you!

[Patsy]

Hi Luann,

Hang in there and do not despair. 2 years seems way too short. I was diagnosed with ILD in 2015 and was prescribed prednisone initially as I had pneumonia to help with the inflammation. I was told at time 3-5 years. My issue also included an over active immune system and was then diagnosed with dermamyostitis. I still take 2mg of prednisone daily. I was then prescribed 2000mg of mychophenolate daily. I did pulmonary rehab and I highly recommend it. They teach you proper breathing techniques and exercises while using O2 which I also highly recommend. I, initially used O2 at 2-4ml at all times and rested most of the day. I slowly built up my endurance and now, 9 years later, live my life normally. I wear 2 lpm at night only, walk about 1 1/2 miles a day, rest when I need it, socialize regularly and eat a healthy diet that includes anti-inflammatory foods. You can look at this disease as something to manage. Keep a positive attitude and take your meds routinely and on time. Look at it as doing everything you can to slow down its progress and strive for balance. Good luck Luann. You’re not alone.

[luann]

🤗

[cpfeln]

Please don’t believe what my nurse daughter says is GOOGLE doctor. I have CPFE with a worse prognosis than ILD. Mine is pulmonary fibrosis with emphysema. I read 1 to 3 years. Went home and read the same prognosis over and over. I was in shock, thought it was pneumonia or COVID again. After my second HRCT and a long discussion with my pulmonologist I decided I to go home and join groups like this. I have gotten more valuable information from this group than anywhere. I am at three years, on oxygen therapy 24/7. I decided I didn’t want to go on OFEV because I have IBS so I started on the mycophenolate. I have good periods of time and now I am just getting over pneumonia. That’s the downside of immunosuppressant like mycophenolate. This time when I got pneumonia I thought I had a cold. I wouldn’t have known it if it hadn’t been my annual HRCT, which showed pneumonia.

My advice is keep up with your medical appointments. Get out and walk or anything to stay as active as you can. My pulmonologist also runs medical research trials. They have multiple medications they are testing every day. I now feel extremely optimistic that cures are coming. I just turned 71 and take it one birthday at a time.

[luann]

Thank you! 🤗

[julian]

I was diagnosed with rheumatoid arthritis (RA) in my lungs (ONLY in my lungs!) a couple years ago and have been on Mycophenolate since. First, 1000mg, 2x/day then the dose was reduced to 500mg 2x/day. As I understand this is for the treatment of the RA, not the IPF, but the RA may be responsible for the IPF or at least partly so. RA is an autoimmune disease and mycophenolate is an immunosuppressant. The bottom line is these should be treated and administered by a rheumatologist in addition to your pulmonologist. After going on mycophenolate and OFEV (2 months on OFEV), my lungs actually showed improvement, but I could not tolerate the OFEV (due to frequent, severe abdominal pain) and was switched to Pirfenidone without further improvement. However, I have been stable ever since getting no better, but no worse either. The 2 doctors feel the mycophenolate has helped and the side-effects are not particularly noticeable; whereas, those associated with Pirfenidone are very uncomfortable and annoying! Good luck and best wishes, I hope it helps if you are a candidate.

https://www.mayoclinic.org/drugs-supplements/mycophenolate-mofetil-oral-route/description/drg-20073191

mayoclinic.org

Mycophenolate mofetil (oral route)

Mycophenolate mofetil (oral route)

[luann]

Thank you Julian 🤗

[Zo Michael]

Hi Luann,

First, I’m so sorry you have this crazy making disease, but, Oh my, I was so happy to see how many replies you recieved to encourage you NOT TO BUY into any stupid two year death warning. Hypersensitivity Pneumonitis was my diagnosis as well in 2017 (mold allergy) maybe! I suspect Vaping may have been the cause!!! I had ovarian cancer surgery in 2013. I QUIT smoking. I used a vape to help and used it ( with no nicotine)for the next two years. I was 64 when I had cancer. It was two years later when I first saw my pulmonologist and am now 75. My pulmonologist suggested a lung transplant pretty soon after I started seeing him. He had performed a lung biopsy (nothing determined) and the blood work that showed a mold allergy. This was done sometime in the first year. I could not imagine ever feeling bad enough to have a transplant. I understand he was trying to help me. . If there is one thing I have learned through this journey is lung disease progresses differently for all of us. This is not the “Cookie Cutter” disease in the Doctor handbook.You said you have faith, I say KEEP THAT FAITH and live your life well and long! Pulmonary Fibrosis has now followed my first diagnosis all those years ago. During the first 5 or 6 years I really fought everything, no oyxgen, Meds, except spurts of prednisone when I needed a boost, once or twice a year. The last two years i did use homeopathic meds. I’ve faithfully had My LF test every 6 months as well as CT scans since the beginning 8 years ago. I have shown a gradual decline. I was very active most of my life and was playing pickle ball two summers ago. So keep fighting it. My only regret is not getting a couple opinions. I might have gotten more direction. I might have tried the Ofev earlier. But it’s side effects were scary to me. I have tried to stay up on any and all info available for those of us with idiopathic lung disease. I am now in possession of my first month script of Ofev now that it has been approved by my insurance and because I have progressed in the disease quite in this last 6 to eight months. I have not started it yet. I Now require 6-8 liters o2 to stay fairly active.

The folks on this forum are great, I have learned more from them and from the wonderful respiratory therapists at rehab then anywhere else!! My only advice is be your own advocate and keep that faith!

Kind regards,

Zo

[Grantie]

I was diagnosed w IPF in 2022 but probably had it for several yrs prior. I am treated by both a pulmonologist and a rheumatologist. I take mycophenolate 2000mg per day and hydroxychloroquine 200mg 2x a day. Also use Breztri daily. My numbers have stabilized and my main issue is fatigue which prevents me from walking as much as I should and socializing as much as I used to. I’m also more susceptible to colds and other viruses. I’ve heard 2 yrs, 2-5 yrs and others who are living 5-8 yrs after diagnosis. Sometimes I wait for the other shoe to drop but most of the time don’t I go on as if all is normal. Also important to see a rheumatologist w experience in PF. Monitor your ANA blood tests every 6 months. Be positive and love life

Debbie

[luann]

Thank you Debbie