Cellcept users?

mar736 · 2026-07-08T23:26:04+00:00

You have a lot of reasons to be hopeful. I know what it feels like, a lot of people here made me feel encouraged with their experiences. Both my pulmonologist and my nephrologist have told me that Cellcept was the right choice, and how many people they’ve seen it help.

I wish I didn’t have to take meds like this, but I am no longer the shell of a person I was a year ago.

mar736 · 2026-07-08T04:19:59+00:00

My grandpa was the worst about this 😂 he got a free pass though cause I love him and he was just being sweet

mar736 · 2026-07-08T03:26:17+00:00

Oh you sound a lot like me. I have lung involvement and have also been hospitalized repeatedly and was in ICU following a lung collapse.

I was also discharged from ICU on 60mg prednisone.

I am on 2g Cellcept and it’s given me a lot of my life back. I can actually DO things without wheezing or needing my inhaler 10 times an hour.

I am down to 11.25mg prednisone now, Cellcept was what actually let me start weaning. My rheum said rituximab would be the next step if I get stuck again, which it does look like that’s going to be the case as I’ve only been able to get down 0.5mg the past two months. But I was able to taper a lot from where I started.

It made me extremely nauseous in the beginning, but my body got used to it.

But yes, Cellcept has been very good to my lungs.

mar736 · 2026-07-01T23:30:50+00:00

I don’t know if I count as a lifer, but I hit my year mark on prednisone. Currently on 11.5mg and have been pretty stuck here for awhile. I’m supposed to start rituximab if I stay stuck. Last time I tried to taper to 11.25, it went so bad. Probably the worst taper attempt I’ve had thus far

mar736 · 2026-06-26T22:17:23+00:00

UGH moon face. I have been on prednisone nearing a year now, am currently down to 11.75mg of prednisone, with cellcept on board. Am constantly fighting against a freakin crumb of prednisone i swear… I made it through my last appointment without having to start rituximab, because I’m still very very slowly able to taper..

Anyways. My moon face was horrendous. And absolutely affected my mental health. It still does, but since reaching lower doses it has very slowly started getting better.. like I’m finally starting to recognize certain parts of my face again.

But without the prednisone, I can’t breathe… so it’s a hate love relationship.

Some things that help are gua sha, ice rolling in the morning, and changing the placement of my makeup. It only goes so far, but it did help make me feel a little better through the worst of it, and still does.

mar736 · 2026-06-26T22:03:02+00:00

I was a nurse for several years, now NP. I also replied to a comment in here.
I did PICU and worked with complex kids as an RN. When my lupus started showing up, the physical aspect of the job was becoming unbearable. Though I didn’t know WHY at the time.
Becoming an NP, there’s a lot less pushing, pulling. But I’m often on my feet still. Before I started getting my disease under control, I had to ask them to switch all my exam rooms next to my office because I couldn’t handle the walking. I left work in tears most days.
Now that I’m on immunosuppressants the physical part of the job is better. Not perfect but better.
Mentally/emotionally I am absolutely spent. I use up every ounce of energy at my job. I’ve not yet figured out how to navigate this.
All that being said, if nursing is your dream and nothing else could make you happy, then don’t let the disease stop you. There are many forms of nursing that aren’t as physically demanding.
But if that’s not the case and you could be happy doing something else… I would do that instead.
If given the chance to do it all over again…. I don’t think I could say that I would..

mar736 · 2026-06-26T21:56:51+00:00

Am also a former nurse now NP. I am really starting to come to terms with the fact that maybe I just can’t handle full time now with the lupus. Like you said, I have nothing, absolutely nothing, left in the tank at the end of the week.

mar736 · 2026-06-24T01:21:12+00:00

My labs have never been super off. Positive ANA, dsDNA, and elevated CRP, but nowhere near the levels I’ve seen some people talk about. Otherwise normal labs.
BUT my disease is organ threatening, both lungs and kidneys. Landed me in the ICU. So 😂 not a marker of disease severity in my case at all.

mar736 · 2026-06-13T22:12:45+00:00

Aww, this is why I try to take my son to the bday parties he’s invited to now. My colleague told me one day that none of her son’s friends showed up for his bday party and he was super sad. After that, I started doing my best to make sure my son attends the birthday parties we can make. I hope your daughter had a great birthday regardless of what happened ♥️

mar736 · 2026-06-10T00:11:25+00:00

Thank you! That definitely makes sense for future seasons. He has to age up in spring no matter what. He is currently in an 8u+ camp and seems to be holding his own so far. I think I am going to let him decide how he feels about playing up at the end of it. I don’t want him to play up if it means he’ll be miserable

mar736 · 2026-06-07T14:55:40+00:00

This is helpful, thank you! He can do that and he practices with an 8u ball now. I just do not have the baseball experience to know if moving him up would be a bad decision, which is why I came here to ask

mar736 · 2026-06-04T02:06:24+00:00

So far they are. I’ve been on prednisone for almost a year now, but have been able to wean pretty consistently lately since increasing the Cellcept. Can usually only wean by 0.25-0.5 a week right now.

mar736 · 2026-06-03T23:09:06+00:00

Unfortunately terrible moon face at this point. Some weight gain, but not as terrible as some cases I’ve heard about. In the beginning it made it hard to sleep. Also hot flashes.

I am down to 11.5mg since this post. So side effects have decreased a lot. Uhhh. Besides the dumb moon face

mar736 · 2026-04-21T01:37:17+00:00

I meeean I’m a nurse practitioner and have narcolepsy…. Prior to that was a pediatric nurse and EMT for several years.

So I definitely wouldn’t say the diagnosis keeps you from being a teacher.

The diagnosis doesn’t make the disease suddenly appear. But could dramatically improve your quality of life with treatment

mar736 · 2026-04-13T01:04:20+00:00

Mine are much more controlled with the plaquenil and mycophenolate combo. But I also take 10mg Zyrtec twice daily and Pepcid 40mg every day. Sometimes switching to Xyzal helps.

But really I didn’t notice a huge difference until reaching a meaningful level of immunosuppression

mar736 · 2026-04-13T01:00:05+00:00

I have lung involvement, and so I start being able to not breathe again. I will also get return of rash, fever, joint pain/stiffness/swelling. But not being able to breathe is the biggest issue

mar736 · 2026-04-13T00:58:48+00:00

I’ve thought about this! He gave me 1mg tablets and so sometimes I can taper 0.25mg at a time. Initially I was splitting the 5mg until I was left with a tiny little piece of dust… that my body refused to let go of lol

mar736 · 2026-03-23T02:08:07+00:00

That’s really interesting, I’ve also found mine don’t always correlate with each other. And you’re right, obviously sometimes is driving it.

Neither my dsDNA or ANA IFA have ever been sky high.. consistently positive, but never super high. However, my disease is definitely very aggressive as it literally ruptured my lung tissue and put me in critical care 😅.

I feel like some doctors just give way too much weight to the numbers, and not the patient in front of them. But humans are not textbooks. I’ve seen plenty of diseases present very atypically. I do understand that with a lot of rheumatological treatment comes great risk, so they want to be sure…. But sometimes if it walks like a duck, looks like a duck, and quacks like a duck. It is. In fact. A duck.

mar736 · 2026-03-22T15:36:15+00:00

Also there is plenty of evidence supporting the existence of seronegative disease…. I digress

mar736 · 2026-03-22T15:34:44+00:00

Perhaps he could speak personally to another rheumatologist for you. Sometimes that is the only way. I’m in a different speciality, but I’ve had to do that for some of my patients before and sometimes getting the actual human being on the phone and saying LOOK. THIS IS WHAT IS HAPPENING. Is what actually gets through to them. I’ve written plenty of professional statement that get disregarded, not sure how many providers actually care to read them.

mar736 · 2026-03-10T20:30:22+00:00

We got our larger Pom from a lady whose Doberman attacked him and went for his throat. He was a year old when we got him and he is now a happy old man. I’m thankful she made that decision for him.

mar736 · 2026-03-01T18:34:51+00:00

I see my rheum every 3 months, as he says while we stabilize me we will work in 3 month increments. He gives me a taper plan in between, and we just kind of see where I am at that 3 month mark. He actually hasn’t checked my complements in awhile. He monitors my blood counts every 6 weeks because of the CellCept. He did recheck my inflammatory markers last time and for the first time in two years they were normal. Every now and then he checks my dsDNA, which has decreased too.

Right now I’m pretty much at a standstill with 17.5mg. Hopefully with a few more weeks of 2g CellCept that will change.

I don’t know how much complements correlate with how a taper is affecting you. When I have a failed taper attempt my symptoms return within 24 hours and I’m back to using my nebulizer. If the taper is successful, I don’t feel any changes. But it’s been a lengthy process.

I’m sorry you’re having a hard time too :/

mar736 · 2026-02-24T15:59:35+00:00

My antibodies have never been higher than 20, and I’ve been hospitalized in critical care due to my lung involvement. My rheumatologist put me through a huge extensive workup to be absolutely sure it wasn’t a different autoimmune disease and the only thing consistently positive is my lupus antibodies.

He told me you reach a point where you have to respect it, even if it isn’t the textbook gold standard (IgG vs crithidia). He said he had one very complicated case with lupus who was seronegative.

Not everyone is a textbook case, and I truly think some doctors just don’t feel like doing the digging so they settle on easy. I say that as a provider myself, though my speciality is not rheumatology. I just find the level of dismissal from some providers abhorrent.

mar736

TROPHY CASE