CellCept

@rbear
Yes, I would also like to know if you are on brand or generic?
Absolutely delighted for you that it’s working for you!!!

Reading about all of your experiences has calmed me as my DR wanted me to go on mycophenolate 2 months ago and I was scared to take it. My local pulmonologist doesn't know what I have and I am waiting for my apt at BW in Boston with a pulmonologist and rhumatologist. In the meantime I have been on prednisone since Feb starting at 40 tappering , now at 15 and I started mycophenolate 1 daily , 500 mg for 2 weeks and now I take 2 a day. My symptons began last August with a wheeze and progressed with pneumonia and humopholous influenza which I then took antibiotics for. The chest pain went away but my breathing got worse . My Dr has said I might have Organizing Pneumonia with somekind of Auto immune connective tissue disease. Over the winter I could barely breathe, could walk only 1/4 of a mile. Today I can walk 2 miles. It's laborous to walk and talk! But I can garden, walk and I feel much better. I still have the wheeze. Does anyone else have a wheeze and cough with mucous? I was scared to go onto the mycophenolate because of the side effects. All of your comments about this drug has made me feel better and I appreciate all of your strength and sharing your experiences as I move through this journey. I , like many of you are very active, enjoy the sunshine and being outside. Thank you for the tips. Please keep them coming. As a young 70 year old woman from MA, I am determined to JUMP over this hurtle. Thank you all for the supportive emails.

@rbear, thank you for that. It really helps to hear from people who have been through this and understand the anxiety that comes with starting a new medication.

I have to admit I’m feeling pretty overwhelmed tonight. I’m grateful for all the advice and support here, but I’m also feeling sad, nervous, and anxious about starting tomorrow. I think part of what I’m struggling with is that I’ve always been active, generally healthy, and taken good care of myself, so this whole journey has been hard to get my head around.

I know many of you have faced much bigger challenges than I have, and I’m trying to stay positive, but tonight I’m definitely feeling a bit scared and wondering what lies ahead.

To add to the timing, I’m due to go on holiday with my family in two weeks—a beach break followed by a city break—so I’m worried about adjusting to the medication, avoiding too much sun, and not knowing yet how my body will react.

I’d really appreciate any words of advice from those who remember their first days or weeks on this medication. What helped you most?

And just to top things off, I’ve woken up today with a sore throat and sniffles. Hopefully it’s just a minor cold!

Thanks for letting me vent. It means a lot to have people here who understand.

@leslyb It sounds like you're already seeing some encouraging progress. Going from barely being able to walk a quarter mile to walking 2 miles is a huge improvement, even if it still feels difficult.

One thing that helped me when deciding about mycophenolate was weighing the risks of the medication against the risks of ongoing inflammation. My doctor explained that uncontrolled inflammation can cause damage over time and, in some people, can lead to scarring (fibrosis), which is much harder to reverse.

Like you, I've been on prednisone since February. I started at 20mg and have successfully tapered down to 7.5mg, and I'm due to start CellCept (mycophenolate) this week. My doctors see it as a steroid-sparing medication—the goal is to control the inflammation, protect the lungs, prevent future flare-ups, and help us get off prednisone, which also comes with its own long-term side effects. At the moment I am very stable, abole to wal, exercise and enjoy life with no problem as I do not have many symptoms but the inflammation is still there. My last DLCO is at 59 (done 3 weeks ago) and the Dr does not want me to go through another flare up.

Something else that reassured me is that if we read the full list of side effects for every medication, we'd probably never take anything! The blood tests are there to monitor us closely and make sure our bodies are responding well, which I actually find reassuring.
For me, the biggest adjustment is being mindful of sun exposure, but that can be managed with sunscreen, hats, shade, and a little extra planning. I try to look at it this way: if protecting myself from the sun helps me stay healthy enough to exercise, travel, spend time with my kids, and enjoy life, it's a trade-off I'm willing to make, but trust me, I am also very nervous to start. I’m just trying to weigh the pros and cons as well. I feel far too you g to be dealing with this, but here I am.

Another thing I've learned from this wonderful group is that mycophenolate isn't necessarily forever. Many people take it for a few years, become stable, and then work with their doctors to gradually reduce or even come off it successfully.

Personally, when I look at the bigger picture, I feel the potential benefits outweigh the risks. If it helps prevent further lung damage, controls inflammation, reduces the chance of future flare-ups, and gets me off prednisone, then hopefully it leads to a better quality of life.

Wishing you all the best with your appointments and your journey. It sounds like you're moving in the right direction.

@ers12345
Thanks for your encouragement . What is DLCO?
Does ayone have a Wheeze as a sympton?
Also I am not understanding why people are still on prednison and taking mycopheolate is suppose to be better for us than pred?

Hi, I'm new to this group. I have a diagnosis of cardiac sarcoidosis, primarily. After doing an anti-inflammatory diet since January, I've lost over twenty pounds and dropped my A1C to 5.2 from 7.0 over a year ago.
I'm now considering immune suppression treatment.
My cardiologist recommended CellCept. I told him that I was leery because of its higher risk of opportunistic infections and risk for colon or skin cancer. My pulmonologist then suggested Methotrexate instead. I understand it has greater GI side effects, I'm concerned if I can travel with either. Hoping someone can share their experiences with either.

@bryanscott I took Cellcept for 4-5 years without problems. Until I developed an allergic reaction which was easily remedied .yes, you can easily travel with the pills. I just carried a copy of the prescription in case anyone wanted to see proof. No one did so I had no problems. The only hang ups are the time changes as you travel. Cellcept needs to be on a strict schedule.
Dosage time in relation to meals is most important so I usually figured that out before we started. I have no info on methotrexate as I never had to use it. Once you get it straight, it’s easy!

@becsbuddy Thanks for your reply! Did you have to wear a face mask when you travelled?

@bryanscott I took Cellcept for 4-5 years without problems. Until I developed an allergic reaction which was easily remedied .yes, you can easily travel with the pills. I just carried a copy of the prescription in case anyone wanted to see proof. No one did so I had no problems. The only hang ups are the time changes as you travel. Cellcept needs to be on a strict schedule.
Dosage time in relation to meals is most important so I usually figured that out before we started. I have no info on methotrexate as I never had to use it. Once you get it straight, it’s easy!