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CellCept
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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@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.
@altabiznet Thank you so much for this. Yes, I am very aware of the potential side effects, but I need this medication to help clear up the inflammation in my lungs. At the moment, I am very stable and have no major symptoms, but I’ve had two flare-ups in the past three years. My last flare-up was in September, and I’ve been on steroids ever since. Prior to that, I was not taking steroids. After my first flare-up, I was treated with steroids and was able to come off them successfully — until now.
I can still feel some inflammation there, although it is manageable. However, it would obviously be much better if it were completely gone. My doctor does not want me to go through another flare-up out of concern that it could cause permanent damage to my lungs, and I completely agree with that approach.
We are hoping that CellCept will bring the inflammation down long term and allow me to come off steroids safely, as I cannot stay on steroids forever. At this stage, they still have not identified an autoimmune condition or found the exact cause of the inflammation. What we do know is that I respond very well to steroids, which suggests the inflammation is treatable.
I will most likely need to stay on CellCept for around 3–4 years. Possibly have a maintenance or just off medication- only time will tell depending on my LFT and CT scans. . I am praying I’ll be one of the lucky ones who gets through it with either minimal or no significant side effects.
Thank you again for all the information and support — I truly appreciate it and need all the support I can get.
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1 Reaction@ers12345
Thank you for sharing your story. Please keep posting your response to Cellcept and your diagnosis, when available.
Wish you all the best.
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3 Reactions@ers12345
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!
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3 Reactions@becsbuddy agree! I’ve got new corneas, and I’m taking Boniva to protect my bones - so I’m all in as well. I’m at the point where I’m desperate enough for some quality of life that I’m willing to take a risk and hope for the best. I’m tired of being sick and tired so for whatever time I have left, it’ll be ride or die lol. The Rituximab is starting to work as I can finally move my left arm and my right leg isn’t dragging. Yay! 🙌
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1 Reaction@wcburns2 thank you for sharing and I am glad you are now feeling more comfortable.
I know I will find the sun sensitivity a problem but I can live with it if it makes me feel better. Luckily I live in ireland where it never gets too hot but going on holidays is going to be tough with the family. Hopefully it will only be for a few years to be on this and get the lungs settled down. All I can do is pray 🙏 for a good result.
So glad you’re feeling better and that your daily h
Life has not been affected too much
@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. 🙏
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1 ReactionHello-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.
@elisaonthego
Good to hear the medication is working. Can you please share how your managed to help GI system through diet.
I am just off the phone with my doctor, I have Acute Interstitial Lung Disease (ILD and it’s important o start medication sooner then later so I’m looking to start Monday or Tuesday.
I wasn’t aware how important it is to help protect my lungs until now.
I’ll let you know how I get on.