Hello Lupies,
I hope this finds everyone doing well today. I am sorry I haven't been on in awhile the weather really hits me hard with everything I have going on.......
My Dermo just put me on Cellcept. This is a change from the 400mg of plaquenil. Has anyone ever taken this? How did it work?
Any advice good or bad........
Thank you all for helping me through all of this. I feel as if I am a Goldfish in a bowl lookin' for a way out
Hello zipperhead,
I can't help you as i've never took it and my Dermo as never offered it me but in due course a members will answer who have either taken it or are on it.
Wishing you all the best Terri xxx
Hi Zipper!
Cellcept is an immunosuppressant and it works for Lupus Nephritis.
It works very good for kidney's inflammations and is better than Cyclophosphamide.
You'll be more expose to infections or virus, bacterias, etc but if you take a hard control of your hygiene and avoid raw food and people with flu or another viral illness, you'll be fine.
That's what I can help with this.
Gonzalo :)
I have been on Cellcept for 4 years, was taking 1,000 mg's a day, but a few months ago, my doctor has decreased it to 500 mg a day, I have lupus nephritis. I truely believe that this medication has keep my Lupus in check, but I have to say, I have a hard time sleeping, going to sleep, staying asleep, etc. I blame it on Cellcept, but not sure if this is the case. Do you have any problems sleeping?
Hello Skitch,
Thank you for your imut on the subject as zipperhead needs as much inforamtion for members as possible.
Love Terri xxx
Skitch said:
I have been on Cellcept for 4 years, was taking 1,000 mg's a day, but a few months ago, my doctor has decreased it to 500 mg a day, I have lupus nephritis. I truely believe that this medication has keep my Lupus in check, but I have to say, I have a hard time sleeping, going to sleep, staying asleep, etc. I blame it on Cellcept, but not sure if this is the case. Do you have any problems sleeping?
Hello Zipperhead!
I am, as well, on cellcept! Due to the inflammation I had on my kidneys.
So far, it's been doing pretty well, in the past 2 months since I've been taking it. I take 3 pills twice a day, 500mg each, so 3,000mg. Yuck!. So to me.. I'm on a pretty big dosage. At first when I was in the hospital I was taking it twice a day. Morning and night and then my Rheumy kinda upped the medication pretty high. right after I left the hospital.
However, you're going to be experiencing some side effects of the cellcept that arn't too nice. However, they do go away! You just got to hang in there. You'll be going through some bloating and nausea.. So try and eat food that are easy to digest before taking this medication (my doctor told me i need to have a full tummy before taking the medication) and as well as keeping yourself hydrated/drink plenty of water to combat the bloating. Sometimes the bloating can get really bad to the point that your lower back will be uncomfortable and wake you up at odd hours of the night. Usually, this will last maybe a week.. But your body will eventually adjust to it.
I hope that helps!
-Julie
Thanks everyone who has contributed so far. I learn so much just reading your responses. The more we read about the various issues and medications used successfully by our members, the greater our understanding.
Faye
Faye,
I have just increased to 2 pills a day (500mg) but, before inreasing started with some chest pain. This has since gone away. I would probably say it was gas, just didn't feel that way. I am taking it because I have terrible DLE that they can't get cleared up. What has cleared up has let nasty scars and aweful pigment. Did you find that your hair fell out? It seems that my hair is falling out worse then before?
Thank you so much for your help. I have soooo much wrong that this support is great.
Anissa
Skitch said:
I have been on Cellcept for 4 years, was taking 1,000 mg's a day, but a few months ago, my doctor has decreased it to 500 mg a day, I have lupus nephritis. I truely believe that this medication has keep my Lupus in check, but I have to say, I have a hard time sleeping, going to sleep, staying asleep, etc. I blame it on Cellcept, but not sure if this is the case. Do you have any problems sleeping?
Julie,
Thank you so much for the info. I have been having a lot of gas. I thought it was just do to the IBS that I also have. I think I had a bubble in my chest over the weekend cuz I had terrible chest pains. It has since gone away though. Yes, I do having trouble going to sleep and staying that way. However, I have had that problem for a long time do to my Chiari. All that the side effects that the Cellcept can cause I experience on a daily basis anyway so I wouldn't know if I had a problem or not! LOL I wish I could drink a lot but, I can't do that either cuz I have accute hyponatermia (extreme low sodium) which I can't add salt to my diet cuz it causes increased intrancranial pressure do to Chiari problems. I know I am a walkin' mess........ HAHAHAHA
Thank you for all the help and support that you and everyone else provide to me.
Anissa :)
Ibie Monstah said:
Hello Zipperhead!
I am, as well, on cellcept! Due to the inflammation I had on my kidneys.
So far, it's been doing pretty well, in the past 2 months since I've been taking it. I take 3 pills twice a day, 500mg each, so 3,000mg. Yuck!. So to me.. I'm on a pretty big dosage. At first when I was in the hospital I was taking it twice a day. Morning and night and then my Rheumy kinda upped the medication pretty high. right after I left the hospital.
However, you're going to be experiencing some side effects of the cellcept that arn't too nice. However, they do go away! You just got to hang in there. You'll be going through some bloating and nausea.. So try and eat food that are easy to digest before taking this medication (my doctor told me i need to have a full tummy before taking the medication) and as well as keeping yourself hydrated/drink plenty of water to combat the bloating. Sometimes the bloating can get really bad to the point that your lower back will be uncomfortable and wake you up at odd hours of the night. Usually, this will last maybe a week.. But your body will eventually adjust to it.
I hope that helps!
-Julie
Thank you all ,
All of you are wonderful. With my having soooo many problems it was great to find this group to help and support me through this journey.
I hope that everyone has a great pain free day :)
Anissa
Hello Anissa,
I've got DLE like yourself and steriod creams reacted on my skin by burning it, then the plaquenil helped for so long and stopped then i was put onto Dapsone they're called last resort sulpha drugs by the dermo's but my organss rejected it...so in the meantime waiting for another referal to a theumo i begged my GP for the plaquenil to see if it would help again.
Reagrding your hair mine was long and bald patches developed besides falling out, skinned it twice and re-growed it shoulder length twice and it's just no good so now it's always kept in the skin head.
Love Terri xxx
Anissa,
Oh man! That is a walking mess! I'm so sorry to hear about that. But that's good that the bubble in your chest has gone away! I remember having a few of those when I started cellcept. It was rather annoying and I had to burp a lot, which annoyed my mom until she had to finally accept that I have to do it. Sometimes I try my best to not do it so loud, but sometimes it slips! :)
But hope that you're doing well and take care!
-Julie
Hello Anissa,
How are you feeling since you added your Discussion...please keep we updated.
Love Terri xxx
Terri,
I have been feeling ok. Thank you for asking. Just the usual aches and pains you get used to after awhile. I will be having bloodwork at the end of the week. I am doing a check on the cellcept so I don't have any problems. I will be going to see my Genetist next week to check on my joints with EDS. All in all just shuffling around tryn' to get the energy to do fall cleaning of my house before it gets too cold outside. I do have a question though. How do you avoid getting sunburn even though you pile on the sunscreen? I can't live in the night..... LOL
I guess I will hush for now
Anissa
Hello Anissa,
Your welcome and feeling ok to wanting to do a boat load of cleaning before winter comes with still issues of aches and pains...you want to becareful and do it all slowly and break in between, as that's a good way of punishing your body going mad.
Well it seems like your in order regarding bloods and checkings of your joints...i went and saw the specialist for my eyes to night with the sjogrens at 7-20pm what a joke for an appointment time but see my new rheumo on friday..about time.
Anissa it does'nt matter how much you dose your body with sun cream protection, summer clothes the lot...the skin still gets irritated with the warmth and even slight sun out with a wind will burn you...it's all down to the rays and you don't want to live at night...in the summer i can't sit out as i get reaction very quickly and come winter i'm stuck in again through raynauds.
There's quite a few of us limited because of heat and rays.
Love Terri xxx
Thank you for this information! I've been taking CellCept for a couple of months and my doctor increased my dosage to 2000mg per day. I'm having the worst tummy troubles and last night I thought I would explode! We are trying to wean me off of prenisone, for my SLE Lupus, and are using CellCept as an experiment. My immune system is totally gone and I'm having sinus infections already. I see my rheumo on Friday and I think he will take me off of this med, too.
Well snap on friday because as you see your rheumo i shall be seeing another new rheumo, where more tests will be done as my organs are rejecting meds..it's a total nightmare at times.
I was offered prednisone in the day unit and refused it being a steriod i just won't touch them through years back with wrong diagnosis of them.
Prednisone causes stomach issues and ontop your Lupus does'nt help as that's another added bonus for upsetting the stomach...your sinus infections may be also linked to TMJ Disease which i have...it's all about playing with meds.