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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.
Replies to "Hello, I am new to the community. My name is Liz, It’s nice to meet you..."
hello Liz. My name is Bill. I do not have a lung disorder but rather Cicatricial pemphigoid in my eyes. It’s about the only thing that docs can treat it with and I may be on it for the rest of my days. I’m 72 now. They do have to get me get a blood test every 3 months to
Make sure it’s not causing some other side that could be worse systems than the pemphigoid I have in my eyes. The good new it’s helpful. as we as ok react differently , it has not effected my daily outing in sun activity. Because I am on other drugs fighting my Occular myasthenia graves. Bottom line it has not affected my daily ativity at all. I take 1,000mg in am and 1000mg at night. All these meds for about 4 years now. Bottom line….there is always hope! So stop trying to find a hero for a asolution for you.
@ers12345 I’ve been on it for 10mos for very similar reasons, I’m on 1000mg twice a day. I was diagnosed with Antisynthatase PL7 and dermamyositis and it was attacking my lungs. It turned into pneumonia before knew what was going on and it got pretty scary there for a few months. Honestly I was nervous to go on cell cept as well but, it turns out it’s not that bad. Because of the immune suppression I am more intentional about getting my vaccines, masking up when I get on a plane and wearing sunscreen. I also got a referral for Dermatologist and see them once a year to do a full body check(the melanoma risk). I get my monitoring labs every 3 mos and my numbers have all been in normal ranges. In fact, it was until I came down the prednisone that my labs started stabilizing. I will say the steroid withdrawal once I got below 5mg wasn’t pleasant. But it only lasted a day or two. I still travel , go outside(I do not sunbathe), and largely have been able to live a normal life. Wishing you all the best! I know starting a new med, especially with the warnings this one comes with can be scary but you got this!
@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!
@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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@ers12345
Cellcept is known to cause GI toxicity - upset stomach, diarrhea. This is in addition dizziness, lightheadedness, possibly palpitations and fatigue among other things. It may need to be taken on empty stomach, but if not tolerated, then taken with food to reduce GI reaction. You can google cellcept toxicity for a full list. Some people report staying on it for years without any issues. I had sensitivity from the start. Now I am on Myfortic, a similar drug with enteric coating for better tolerability.
It may not be pleasant staying on these medications, but they are helpful with various autoimmune conditions.
Regarding lifestyle changes, staying active in the bright sun may not be a good idea anymore, mainly because of your lung condition. Talk to your doctor about what factors may be aggravating your condition.