Cellcept

I know there are a few of you who have taken this for ITP. What side effects, if any, did you have while on this drug? My dr is wanting to start treatment on me for something else and she is recommending 2 different plans, either just 80 mg of Prednisone OR Cellcept and a lower dose of Prednisone every other day with a slow taper starting with 40 mg. I REALLY do not want to do either, but I am being told I don't really have a choice at this point if I want to stay healthy and avoid dialysis in the next few years. Dr says one of these two treatment plans could put me back to where I was a few years ago and my kidneys would be stable for alot longer.

I took Prednisone (100 mg) for a year along with Cyclosporin before. HATED it and begged to be taken off so they slowly weaned me off. I am sooo worried about the weight gain with Prednisone because I am already at my heaviest weight ever and this is while I am actually watching what I eat and exercise. (At least 4 times a week, sometimes 6 either by walking 2-3 miles or 45 minutes on the elliptical) My dr thinks my thyroid may be the problem with my weight gain because she looked at my food diary and said I should definitely be losing weight.

I am starting to wonder if thyroid medicine can mess with your kidneys because my creatinine and protein spillage got worse from the last appointment 2 years ago to last month's and then got even worse (by alot)from last month's to yesterday's appointment and now I have to go back again next month! (NOT happy about that because I am really trying so hard not to miss work and then if I start these drugs, I could become immunosuppressed and that isn't good when I'm around kids all the time.) I'm not upset about this, but I really just want to avoid gaining weight and I don't know what I can do better than what I'm doing now. (I'm under the Weight Watchers plan.)

Pauline:

I'm so sorry to hear this. What dose of CellCept?

I've taken both (Prednisone for ITP and CellCept for Lupus), and I'd have to say that CellCept was easier. However, I did stop taking it due to a weird side effect. The only way I can describe it is that my brain felt black. I know, weird weird, but I was unable to think on that drug. Because my job is very mentally demanding, I couldn't tolerate it. I am the only person I know who's taken CellCept that had that side effect. Kim took high doses for years and did quite well.

I wasn't really all that worried about immunosuppression; it's not quite as bad as some other drugs out there.

I took cellcept for a yr and 1/2 2 maybe longer. I was on a low dose 500mg 2 x aday. I didnt notice much of anything with it little side effets. When I swicthed rhema she told me that the dose I was on really wasnt doing much to help with my symptoms. It was rather expensive at one time costing almost 450 dollars for 1 month supply. I was swiched to Imuran which is a old durg and works alot like cellcept. They are finding alot of bad things with cellcept like an increase risk of cancer. I did very well on Imuran and almost all my symptoms disappeared. My liver enzymes went up on the cellcept but not the imuran. I know steriods arent great but if it will save your kindeys it may be worth it.

All of the immunosuppressants have an increased risk of cancer. Take your pick.

Jen - are you still on Imuran or did you stop when you got pregnant?

I think my nephrologist said she was going to start me on 1000 mg twice a day and then she would either increase/decrease the dose after a few months depending on the results of my labs. I know for sure they will also do Prednisone and that will start at 40 mg and I will slowly wean off of that as well.

I do not have any symptoms, but my neph said that was normal and that people with only kidney problems don't even start to feel bad until they're already in kidney failure, which is why they start treating before it is too late. I called the nurse and left a message to fill the prescription so I guess I will start in the next few days.

I was warned of the cancer risk as well as a possibility of any tumor growths, but she said they would monitor me closely and take me off if anything odd shows up so that isn't something I'm worried about. With cyclosporin, I had to have weekly bloodwork to watch for my liver functions and I was taken off once they became too elevated.

Thank you for your input. I truly hope I don't get any of the brain fog. I feel like that's all that has been going on with me these past few months and I've resorted to writing everything down all the time or I will forget what I need to do. (Found this out the hard way when I sat at an ATM machine for 30 minutes trying to remember my PIN number and for the life of me, I just could not think of it!) I figured out what it was later that day! (No Alzheimers or even dementia in my family as far as we know but all of my grandparents died before they were 75.)

Pauline:

They don't know the cause of the nephritis?

What I had from CellCept wasn't just brain fog. I have that most of the time from Lupus - this was weirder....I can't even describe it. I'd just sit and stare and not even realize I was doing it...like black outs. When I tried to think, my brain would just go totally blank and I didn't know what I was even trying to figure out. I went through something similar on Lyrica, only I'd keep functioning but not know what I was doing. I was driving and didn't know where I was - on my 15 minute drive home from work. Been driving the same route for 14 years! That was scary and I knew I had to get off of that one too.

Not knowing your PIN would be scary, since that's something most people know like their birth date and social security number. Good luck and let me know how it's going.

I stopped when I found out I was pregnant. My rhema wasnt happy but too late. I may start after the baby is born back on the plaquenil and possibly the imuran.

Pauline I hope that you get everything in check, its hard to find the right combo that gives you the results your looking for.

Pauline, I've been on thyroid medication for more years than I can remember and my kidneys are fine.

Yes, they know it is from my two pregnancies when I developed Pre-eclampsia and I began spilling protein. Usually it goes away once the baby is born unless there has been damage to my kidneys. I didn't realize I had kidney damage until I was pregnant with Caitlin and was told that if I got pregnant again, my kidneys would fail.

So far so good! I picked up my prescription Friday night. Planned to start Saturday morning, but I chickened out and decided to wait until yesterday to start. Only symptoms I am noticing is stomach upset, but I think that is normal and it is bearable. Already have to go back for more labs at the end of next week and then see my nephrologist again the following week. I feel like I am following in Caitlin's footsteps now with multiple drs appointments! At least, my drs are willing to schedule them really early in the morning and later in the afternoons where I am not really missing much work.

I decided to start a low carb diet because I really want to keep from gaining weight on Prednisone. I truly hope it works. Everything should be better this time around because last time, I was totally unaware of what Prednisone was doing to my body.

Are you doing Prednisone and CellCept?

Yes Im on both Cellcept (1000 mg twice a day) and Prednisone (40 mg a day and i think they will taper down on a monthly basis). Felt some extreme fatigue for a few hours this afternoon but feeling better now. Only thing bothersome is that a huge zit is popping up on my forehead and it hurts like hell. Dont know if its from the prednisone or just a coincidence. Its almost like a cyst since there is no head yet. Yuck!

How's it going, Pauline?

Week 2 of the drug combo-wish I could say things were going great, but its not. I was fine until two days ago and now these side effects are popping up: "off-balance"-like I cant think straight, weight loss (a plus for me but 10 lbs in one week), stomach discomfort, kidney pain,and my biggest complaint-extremely dry skin on my face to where it is scaly and wrinkly and i look like Ive aged about 10 years overnight.

I go for bloodwork at the end of this week and see my dr next week so we will see if its working. If it is, I will just learn to tolerate these side effects and see what I can do to ease my scaly skin because it burns when i put any type of lotion (no fragrance) on it and it is specifically for the face.

Hmmm. Dry scaly skin. Have you tried plain Vasoline? I just bought some Gold Bond lotion that I love. It's a healing lotion that might be worth a try. It feels great going on, non-greasy and has a Vasoline feel.

As for the other side effects, not much you can do. Try Pepcid Complete for the stomach discomfort.

I hope your results are good - keep me posted.

Thanks Sandi, i will try that. How often do u apply it? And do you wear makeup over it? I think that might be making me look even worse. I usually have very soft skin so this bothers me.

I haven't used it on my face, just hands. My hands are really dry all the time from frequent washing. Try it at night.

Ugh, my face looks worse tonight. I am almost 100% sure it is a mylar rash. Perfect butterfly shape over the bridge of my nose and over my cheeks. It is like an extra layer of thick skin is on top of my regular skin and it is still scaly and bright red. Strange bec im on the same meds Lupus patients take but dont have Lupus. (Well cant really say dont have it bec ive never been tested.). I took a picture of my face to show my dr next week. I pray it is just a temporary reaction to the meds and nothing more.

Pauline Im sorry. You started a high dose. I expierced nausea and stomach upset when I started but it was 1/2 your dose. I started at 250 2 times a day. As for the rash, I have no insight. I hope the lotion helps. Try taking the meds with milk or bread. It may help your stomach somewhat. Keep us updated on the progress. If it gets any worse it may be time for a call to your doctor.

Pauline - if it's the malar rash, lotions won't help. You really do need to get tested for Lupus. You are on the same meds, but it's probably too soon for them to work.

Had a bit of a scare today! I got labs done late yesterday afternoon and this morning, got a call from the nurse asking me if I was feeling ok and that I needed to go to the hospital to have labs redrawn immediately and i was not to leave until the results were in. My first thought was that maybe the Cellcept had caused my platelet count to fall. But that wasnt it, they said my potassium levels were critically low and that if they didnt increase, theyd have to admit me for observation. I was on pins and needles waiting for the results. They came out and said that my potassium level was normal and I could go home. When i asked about yesterdays labs, they said it was all obviously an error! Whew! I will see my dr on Monday to see if everything else was ok.

I've been wondering about you. I'm glad you're okay!

Saw my kidney dr this morning. Kidney functions are still getting worse, but they said to give it more time on this dose of Cellcept (another month) and then they're going to raise my dosage to 3 mg/day and maybe even raise my Prednisone levels. I also have a urinary infection and I didn't know that so have to take some antibiotics so that it doesn't move to my kidneys. My nephrologist seems to be the most worried about my thyroid and still feels like this is contributing to the increase in my creatinine levels. Overall, I feel ok though. No true side effects other than the extreme dryness and thirst and my dr is taking me off the dieretic to see if this helps. I feel like I am visiting my pharmacist every week and they've really gotten to know me now!

She did say that if things didn't improve after two or three more months, then we'd be doing another kidney biospy to see if there is another underlying cause.

Caitlin has her dr's appointment tomorrow morning. Praying for good numbers because she had a 10 minute nosebleed (heavy) and I'm praying it is just because of the changes in our weather here and not ITP related. It is the only symptom she has so most likely she will still be within the normal range. (Keeping my fingers and toes crossed!)

Wow, Pauline. Did you mention the facial rash?

I visit the pharmacy every week too - sometimes twice a week. I do know her personally; we know where each other lives and she's brought my meds to me in a pinch. It helps tremendously to have that relationship!

I hope Caitlin does ok tomorrow!