CellCept

Yes, I worry more about having flares than side effects. Flares are harder to deal with for me as they lead to more organ damage. Especially with my lungs. I do not want them to have more damage as I am already at a reduced capacity to breath.

Exactly. At least in the beginning with the Prednisone, there were side effects but I wasn’t waking up in excruciating pain every morning unable to walk. That’s the symptom that initially pushed us to up the steroid in the first place. Now I’m have obvious Cushing issues and lowering the Prednisone feels most important. I know it will be trading one set of side effects for another but hopefully it will mitigate the long term effects of both the disease and higher doses of Prednisone. It’s all just so hard to treat. I’m glad I have docs willing to try bc all bed all day sux!

I was only on it for a few days and had to stop because I broke out in a head to toe rash. It did help for the joint pains though

@robinlundblade. @pamelalaa. Both of you are really worried about mycophenylate and maybe getting off of prednisone. Is this correct? All drugs are scarey to take. And they scare me, too. But, I give myself a couple of days to adjust to the new meds and if all seems OK, I go ahead with my life. I’m also on rituximab with hopes of coming off mycophylate. And I’m really working to get off prednisone. Yes, prednisone caused me some problems ( cataracts and osteoporosis). I had cataract surgery and can see without glasses for the 1st time in my life!! And I take enough calcium to keep my bones strong. Yes, take the risk!
What do you think your future would be if you don’t take a risk?

Thanks so much for the encouragement. I sure am worried but my question was more about understanding specific personal experiences. Reading the potential side effects from the drug manufacturers are only helpful to a degree.

I have a unique situation in that bc I feel like crud most the time & bc I have ADD & some sensory difficulties, I can ignore side effects for too long & not even realize I’m doing it. Then a week or two later I’ll talk to the doc, tell them what’s happening, and get calm/not so calm, “Um, I think it’s best you stop taking (fill in blank of upwards of five drugs I react to).”

The idea of giving myself a few days and then really checking in is so helpful. Thank You!

I’m also ADD and I find myself obsessing about things. I keep a journal which helps but then I go over it and over it like it will make a difference in anything. I just purchased a health journal off Amazon that’s a lot more organized and I’m hoping it helps. With ADD you tend to second guess everything. So keeping good records and knowing when a decision was made you didn’t do it without lots of thought.

I just read again what you put and I also find I ignore things till they’re pretty bad. Not like we are not self aware. You just train yourself to ignore your misery to try and live life. But sometimes we have to be aware that something has changed.

I was just given Mycophenalate for Autoimmune Hepatitis after trying Budesonide,Azathioprine,Mercaptopurine at least twice and having very bad side effects to these,but I worry nothing will work, I can't take Prednisone either, my thyroid function is low and I have gained weight again. I am in remission for Lupus. Has your AIH improved and do you feel better? I feel like I keep hitting a dead end with medications.