CellCept

@rbear thank you for sharing your story with me and that you have had a good transition to the medication and that it is helping. Most importantly, it’s helping
you !!
It is very scary to give up the sin, but is it safe to say that as long as I use factor 50 - and reapply every 2 hours and cover as much of my among with long pants and light long sleeves that I will be okay.
Would you ever swim in the ocean or wear shorts in summer / Spring days.
I have a dermatologist that I will start to see once a year to make sure I’m okay with any sun damage. Am I over thinking g this? I am also nervous of the initial side effects and just hope they don’t hit me as hard.

What were you side effects once lowering away from 5 mg and how long were you on the steroids? I’ve been on them one and off since September and fully on them at 20 mins since February and I’m currently at 7.5 mg and feeling stable. My doctor wants to get me on medication to avoid a flare up and having it affect my lungs with permanent damage.

It’s nice to know I’m
Not alone. Thanks for responding to my post. 🙏

@ers12345 a little more context, I’m a bit on the younger side for someone to get AS/PL7. I’m a 43 yr male and until my lung issues , used to run 5k’s 3 times a week and was in pretty good shape, no other issues. This thing took me by complete surprise. Honestly I’m just so thankful these days that I can take a pill to manage all this and it’s working. I’m more mindful of the sun between the hours of 10-4. I keep the UV index on my watch or check my phone. And if I’m going be outside for more then 45 min then I’m more intentional about the sunscreen use. I’m not reapplying every two hours maybe more like 4. I still wear shorts and short sleeve shirts. I live in Minnesota the Sun doesn’t get super intense year around. Mostly during the summer. I started on 60mg a day of predinisone starting last July and have been tapering ever sense. I just got off completely 4 days ago. The withdrawal just made me feel super lethargic, a bit moody, and achy. I just pushed the fluids and took it easy for a couple of days. I would encounter mild flares on my skin and would get a little mucusy in my lungs every time I stepped down. But it always has stabilized. As others have mentioned, you can manage the GI side effects with diet. For me, avocado’s , spinach and yogurt and other fermented foods have helped. Occasional alcohol use can cause some heartburn(which I never had before). This is an old drug that’s pretty well known. It’s so much better than the alternative. Don’t over think it!:) I just followed the directions from my Dr and the paper work that came with the drug. It’s been surprisingly tolerable.

@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.

@rbear - hello, nice to meet you and wow, your message is so helpful. Thank you!!
So positive !!!
My lung issue also taken me by surprise, I am also so very active, gym:4/5 times a week, along with tennis 3 times a week. I walk nearly every day and I love hiking, golf, skiing and beach side, the occasional surf for fun (I’m not very good at that). So this has hit me hard BUT after reading all your post I have wrapped my head around it and I am starting to feel so fortunate that there medication that can help. I hope it works for me and I’m starting this week. Hoping that if I do get side effects it will pass before I head away on our family holidays in two weeks.
The sooner I start, the better and I am hopeful I can stop living in fear of a flareup. I can manage sun screen, face masks at the airport and flights (do you all do that ) I can manage no sushi 😭, I can do all these things to help my lung feel better.

In regards to GI: I’ll have to see how I feel and will keep you all posted. I eat very healthy anyway so I’m hoping my good habits will help. I also love my wine on the weekends and hope I’ll still be okay to enjoy but I’ll deal whatever comes my way.

Seriously this community is so helpful because it’s hard speaking to people that have no idea what I’m going through- you all do in some form or another- thank you all and hope you’re having a nice weekend - wherever you are 🫶

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.

@ers12345 a little more context, I’m a bit on the younger side for someone to get AS/PL7. I’m a 43 yr male and until my lung issues , used to run 5k’s 3 times a week and was in pretty good shape, no other issues. This thing took me by complete surprise. Honestly I’m just so thankful these days that I can take a pill to manage all this and it’s working. I’m more mindful of the sun between the hours of 10-4. I keep the UV index on my watch or check my phone. And if I’m going be outside for more then 45 min then I’m more intentional about the sunscreen use. I’m not reapplying every two hours maybe more like 4. I still wear shorts and short sleeve shirts. I live in Minnesota the Sun doesn’t get super intense year around. Mostly during the summer. I started on 60mg a day of predinisone starting last July and have been tapering ever sense. I just got off completely 4 days ago. The withdrawal just made me feel super lethargic, a bit moody, and achy. I just pushed the fluids and took it easy for a couple of days. I would encounter mild flares on my skin and would get a little mucusy in my lungs every time I stepped down. But it always has stabilized. As others have mentioned, you can manage the GI side effects with diet. For me, avocado’s , spinach and yogurt and other fermented foods have helped. Occasional alcohol use can cause some heartburn(which I never had before). This is an old drug that’s pretty well known. It’s so much better than the alternative. Don’t over think it!:) I just followed the directions from my Dr and the paper work that came with the drug. It’s been surprisingly tolerable.

@rbear

It is Good to hear that Cellcept is working for you. Are you getting the original brand now distributed by Genentech, or one of the generics. Which one?
From Copilot search:
CellCept is originally manufactured by Roche Pharmaceuticals, now distributed by Genentech, with multiple generic versions produced by companies like Teva, Sandoz, and Mylan.

@ers12345 of course! When I was going through the thick of it I was definitely feeling alone and full of anxiety and uncertainty so I watch these forums to see if I can help in any way. One additional piece of advice is to be patient with healing your lungs. I almost guarantee It will take longer than you want and it probably won’t be neat linear recovery. I found the healing journey had peaks and valleys. I’d have some days during pulmonary rehab where I’d be at 96% o2 and then 2 weeks later be down to 92%. I learned to stop chasing specific numbers day to day and focus on long term trends. It’s almost taken a solid year for me to begin to approach anything that feels kind of normal. You just have to keep putting one foot in front of the other and do your best to move forward. I hear you on the sushi, I’ve been able to successfully have it a few times, but most of the time I have the cooked stuff. Truly wish you all the best and have a great week!

@altabiznet-Good question, I’m taking the generic version called Mycophenolate Mofetil which is manufactured by Camber Pharmaceuticals.