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CellCept not taken on an empty stomach -- bad idea?

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Posted 4/14/2008 12:43 PM (GMT -7)

Hello, all,

my daughter was diagnosed with SLE about 7 weeks ago, her kidney biopsy showed heavy inflammation but no damage so far -- she's been on CellCept (3gm/day), Plaquenil (200mg/day), Prednisone (10mg/day) and baby aspirin. Two stints in the hospital since then, she's feeling pretty well considering.

Her recent kidney tests show very high protein (15) in her urine and very low Albumin (1.5).

The question is: we had not paid enough attention to her taking CellCept on an empty stomach, until about 5 days ago. They want to start Cytoxan in a couple of days and we're hoping today's blood/urine tests show an improvement, she's been taking CellCept on an empty stomach for 5 days now.

Does anyone have personal experience on how they've seen results change when you take the drugs correctly?

Thank you all!

Nancy

Posted 4/14/2008 1:33 PM (GMT -7)
Hi Nancy,

   Welcome to the forum. I'm sorry to hear your daughter is going through so much. I know this is taking a toll on you as her mother. It's so hard to see our children suffer with anything much less a disease like this. My heart goes out to you and your family.

   As far as the Cellcept, I would suggest taking it with food. Most of these meds are very hard on the digestive tract. I have taken it in the past and always ate before taking it. It made me nausous if I took it on an empty stomach. I felt great while taking it but it raised my liver enzymes and the doc took me off it. There are others here that are taking it now and I'm sure they will come along soon to give you more advice on this.

   Will your daughter be taking Cytoxan in pill form or infusions? I had the infusions in the past and it work well for my lungs and CNS. A couple of our members had the infusions for kidney problems and did well also. There are some who have taken it in pill form as well.

   Please take care and keep us udpated. You and your daughter will be in my thoughts and prayers.

                                                           Babs

Posted 4/14/2008 6:23 PM (GMT -7)
Hi Nancy, (((( hugs )))) I agree with Babs I am on Imuran and Methotrexate which are both similar to CellCept and I was advised by my doctors to always take it with food. If I don't eat enough (like a bowl of cereal) I will get nauseous so I always make sure I eat plenty.

You and your daughter will be in my thoughts and prayers. Take care and let us know how she is doing.
Posted 4/15/2008 7:09 AM (GMT -7)
Hi Nancy. I'm so sorry to hear about your daughter. I take Cellcept and although the results obtained aren't different because of a full or empty stomach, Cellcept will always make me nauseous if I don't eat when I take it.  I've been taking Cellcept since 01/16/08 for CNS problems and so far I've had good success. I'm sending you and your daughter lots of (((HUGS)) and positive energy!  Love, Butterflake

Posted 4/15/2008 7:27 AM (GMT -7)
Hi Nancy. I take Cellcept first thing in the morning with my other meds, and in the evening a couple of hours before bedtime. I don't pay attention to whether or not I eat and honestly don't think it makes a difference with me. I'm on a low dose, however, which might make a difference. And then we're all different, aren't we.

I'll keep you and your daughter in my prayers. A sick child is every parent's nightmare, and my heart really goes out to you. Keep us updated on her progress.

((((((Hugs)))))

Pat
Posted 5/5/2008 4:42 PM (GMT -7)
Does anyone taking cellcept have problems with blurry vision?  I am on it for auto-immune hearing loss, and think it is affecting my vision.  Anyone experience this?  My doctor said he never had a patient with that side effect. 

Page

Posted 5/6/2008 5:05 AM (GMT -7)
Hi Page.  One of the reasons I started CellCept was for double/blurry vision. The CellCept has improved my vision. Nope, doesn't cause blurry vision for me!  Love, Butterflake

Posted 5/12/2008 4:36 PM (GMT -7)

Hello, all,

Just a quick update to let everyone know that my daughter is having good days, we're surprised. She had not improved quickly enough for the doctors so they started her on once a month Cytoxan.

The Cytoxan was done almost a month ago along with Mesna and Solumedrol, her next treatment is in 2 days. It wasn't all that bad, she tolerated it well with a few days of sleep afterwards (yes, she got up every 2 hours to go to the bathroom), and occasionally needed Compazine to take away some mild nausea.

The good news is that not too many days afterwards, the swelling all over her body died down and she started feeling near normal. She's extra careful not to expose herself to people who are sick now that they're bringing her immune system down lower.

For those facing Cytoxan for the first time, it's not all bad news -- it's played a huge role in her feeling well!!

Take care, I'm learning so much from this forum!

Nancy

Posted 5/12/2008 4:43 PM (GMT -7)
(((( Nancy ))))) I am so happy to hear your daughter tolerated the cytoxan well, that is great news. I pray she continues to improve.
Posted 5/12/2008 5:07 PM (GMT -7)

Hi-Whenever you have drug questions please consult a pharmacist.  I am currently on Cell Cept and know you must take it on an empty stomach meaning nothing to drink but water too.  Good luck!

Posted 5/12/2008 5:16 PM (GMT -7)
Hi again
I am new to this site but on the subject of Cell Cept, once again, I am surprised by the advice even from users to try taking this with FOOD! Cell Cept should only be taken in the morning with only water, NO CALCIUM, NO ANTACIDS AT ALL (Gas X is okay later in the day), NO IRON!!! You must then wait ONE HOUR before taking some of your medications (again, check with your pharmacist) and TWO HOURS BEFORE TAKING CALCIUM! The Cell Cept will not fully absorb if you are not following this procedure.

With the cost of this drug, please TAKE IT CORRECTLY as you are using it for serious diseases. Doctors should probably tell you more about this. As for the other drugs, I have been on them all and I agree that food is better when taking them to minimize that nausteous feeling.

I sure hope people read this!!
Posted 5/12/2008 5:43 PM (GMT -7)
Thanks for the info.  I take it two hours after I eat and one hour before, so it ends up being about midmorning, and then again before I go to bed at night.  Mid morning I am usually very hungry, but hold off eating to take the cellcept.  Then I start feeling nauseated.  Does this happen to anyone else?  I feel dizzy, nauseated and blurry eyed.  It is the only med that I have found so far that is saving my hearing, other than prednisone, so I am really tossed about whether I should put up with the side effects and stay on it.

Page

Posted 5/12/2008 7:33 PM (GMT -7)
Great job on taking this correctly! I do not have to take it in the midday so I don't know if your nauseausness is caused by this or maybe by another drug??? I hate to feel like that myself.

In regards to the blurry vision, I did have problems with it on higher doses of Prednisone which I also take. Now that I am down to 5mg. per day my vision has almost returned to normal.

My doctor thinks that the Cellcept is working but I might also be in more of a remission and I wish I knew which one it was!
Posted 5/13/2008 6:40 AM (GMT -7)
Hi everyone, I'm taking 2 grams (four tablets) of cell cept daily. I take one dose at 11 AM, and 1 dose at 2AM when I get up to use the bathroom. This way I take it on an empty stomach. I had a little nausa when I first started but that has gone now. It has really helped my lupus and I'm so thankful something is working. I was under the impression that it had to be taken on an empty stomach to work also. take care all,  deb

Posted 12/26/2012 4:17 PM (GMT -7)
I had a liver transplantation in 1999 and I was taking cellcept for the past 12 years and following the one hr before food or two hrs after.. I just had my 2nd transplant back in April 2012 and my Dr. told me that it was. OK to take it with food..I have been doing it and it works just as good..Thank god that I got that out of my schedule...
Posted 12/28/2012 4:29 AM (GMT -7)
My rhumty instructed me to take Cellcept on empty stomach (before meal) because the body absorbs better. I have no problem so far with taking them on empty stomach.
Posted 8/26/2014 2:35 AM (GMT -7)
I started Cellcept last week and did the 1 hour before or 2 hours after eating. I spent 2 days with such abdominal bloating, pain and gas that would not move, I thought my insides were going to burst. It was like being in labor, I spent hours each time trying to walk off the bloating/pain, laying on my stomach, bending, stretching, huffing and puffing. Then I read posts about people who have stopped taking it on an empty stomach and what a difference. It was mentioned that the info sent with the CellCept that is used everywhere but in the US states it should be taken with food, for some reason the US literature is still saying no. What a better day I had after taking it with food. I had some nausea and blah stomach, but NOTHING like the insanity of the days before. The only thing different is tonight I woke up with what feels like bile stuck in my throat. No coughing, clearing my throat, drinking, gagging and dry heaving, eating something like bread to move it down, is making it go away. Anyone else have anything like this going on? I almost made it a whole day without a new weird thing.

PS: I'm on my first month of Lupus diagnosis and it has hit me like a ton of bricks, one thing after another going crazy. What a way to learn that you can't learn anything because the next hour will be different.
Posted 10/24/2016 1:36 PM (GMT -7)
Hi, all!
I'm on Cellcept (mycophenolate mofetil) for my eyes (I have birdshot uveitis - very rare). I go to UAB Callahan Eye Hospital and Dr. Read told me that Cellcept absolutely must be taken on an empty stomach (no less than 2 hours from your last meal) and no food taken for a full hour following dosage.
It's a pain but my eyes are stable after only 3 months -- so I think if taken properly, it can work.
I know you're hearing different things. I would recommend you ask your doctor and follow his/her advice. Cellcept is not for everyone (stomach issues, weight gain, fatigue, hair loss, muscle and joint pain are common).
Posted 10/24/2016 6:37 PM (GMT -7)
Kls1700,

I'm very confused by your post, for a couple of reasons. How long have you actually been on Cellcept? And do you have Lupus? What kind of doctor suggested you take Cellcept on an empty stomach? Just curious because I have been on this medication for over 8 years, I was prescribed this by my rheumatologist who is trained in autoimmune disease and I see a opthomologist every 6 months due to also being on plaquenil which negatively affects the eyes and I have never, ever heard of taking Cellcept on an empty stomach. Actually I've been told over and over quite the opposite because of the damage that can be done to the stomach and intestinal tract. Also, at the dose a lupus patient takes there is no reason Cellcept would cause hair loss and the reason it is prescribed is to assist with reducing inflammation in the body, so what you are describing that it would cause joint pain makes no sense at all, it should actually help with joint pain.

I don't mean to sound rude, but everything that you are quoting as possible side effects is the exact reason a person with lupus would be prescribed Cellcept.

Melissa
Posted 10/24/2016 7:59 PM (GMT -7)
Actually, Melissa, I wonder if you are confusing Cellcept with something else.

Cellcept is an immuno-suppressant, not an anti-inflammatory. Any aid it may provide in reducing inflammation is incidental, not the main thing it does. It helps regulate the over-active immune systems we have with Lupus - and can help some of us into remission. (Although Rheumies use the words "quiet period" rather than "remission" with Lupus.)

And yes, the doses of Cellcept used for Lupus do/can cause hair loss - sure did for me!

Cellcept can be taken with or without food. It is MORE EFFECTIVE when taken on an empty stomach, but doesn't HAVE to be taken that way. With some meds they HAVE to be taken on an empty stomach, but Cellcept will work either way, just not quite as effectively. Again, I know this from personal experience. It just didn't work for me to take it on an empty stomach, and my Dr okay'd me taking it with food -- AND it put me into "remission".

I find it interesting when people take Cellcept (who aren't transplant patients trying to avoid organ rejection) for longer than the 18-24 months that are stated as usage limits. My "autoimmune disease trained rheumy" states that if it doesn't make a significant difference in Lupus symptoms after that long that another medication should be tried.

Everyone remember, no matter what our experiences are, this is a forum of equals and NOT professionals. All we can do is talk about what happened with us, NOT interrogate others or act like we have superior knowledge.
Posted 10/25/2016 3:50 AM (GMT -7)
My apologies Lynnwood, I was not trying to imply Cellcept was a anti-inflammatory, but rather suppresses our immune system when it is over active and causing inflammation in our joints, tissues, organs; in my case exactly why I have been put on Cellcept. You are correct, I am not a medical professional, I am simply a person who has lived 20 plus years with lupus and 8 plus of those years on Cellcept. Yes, I have tried many, many other immunosuppressants because my disease has not been controlled and unfortunately each time my body has either rejected the medication or it simply did not control the inflammation or disease activity on body and we end up back on Cellcept and in the case I'm in right now adding additional immunosuppressants. Unfortunely, I am out of all options available out there for a Lupus patient and I am back to Cellcept once again. I only wish there was newer medication I haven't tried that would suppress my disease.

I understand what you are saying that medications may be better taken on an empty stomach, but I will stand by what my doctors and my medication bottle itself states, I have been advised over and over to take with food.

I guess what I should have said is at the rate at lupus person is prescribed is not the rate of that of a cancer patient, I.e. It is used as a immunosuppressant agent not a chemotherapy agent and it is less likely to cause hair loss. Can it happen, yes. I get defensive because so many people try to pass Cellcept off as a chemo and it is not. Mind you KLS1700 did not, so my apologies.

Going forward I will be sure to state things as "in my case" or state references. Forgive me for my ignorance in this case.

You're super blessed that Cellcept put you into remission! No matter our differences in this discussion it is an AWESOME medication and I wish all of us who are prescribed Cellcept the same success!
Posted 10/25/2016 6:21 AM (GMT -7)
Yes, I've been extremely fortunate in how well Cellcept has worked for me!! I think it also helped that I was in very good shape before Lupus hit me.

I think it's important to remind everyone that some people DO get good results from Imuran, or Cellcept, or MTX!

I assume you've tried the newer treatments such as Benylsta, IVIG, and Cytoxan? And probably the more traditional Imuran and MTX?

I understand some Drs are now trying a number of other drugs that I don't see very much written about, such as Leukeran, Leflunomide, Sandimmune, cyclosporine, Rituxan and Orencia. I don't think anyone here has ever mentioned any of these...

Best wishes.
Posted 10/25/2016 8:47 AM (GMT -7)
I agree, many people do get great results and are able to control their disease with Imuran, Cellcept or MTX. My son who has NPSLE and RA is one of those, he was on MTX for many years with great success. He went to his appointment last week and will now be trying Imuran (was currently on Leflunomide) I hope he has as great of success with this as he did MTX.

Yes, I began many, many years ago from oral medications such as Imuran to infusion type such as Benlysta, then moved through each medication depending on what the situation was, i.e. Issues the medication caused to my liver counts, allergic reactions (mild to severe) or the medication simply was not controlling my disease. My doctors have even tried to be creative and tried to put me on things like ZelJanz, but my insurance would not approve me stating I do not have RA. I am currently on a combination of Cellcept and Leflunomide, started this regimen about 6 weeks ago and hoping I find some success with it.

Anyhow, conversations of this nature are helpful as one medication I have never heard of is Sandimmune. I will definitely do some research on it and inquire with my Rheumy.

Thank you for the information, have a great day!
Posted 10/26/2016 6:52 PM (GMT -7)
Just wanted to add that I, too, have found CellCept to be the drug that has been the most effective in controlling my lupus. I have been on it for about 10 years. With the supervision of my doctor, I have attempted to stop using it 2 or 3 times, but each time the lupus symptoms worsened significantly. So it may be a lifelong drug of choice for me.
And I have had two different rheumatologists tell me that it is to be taken on a completely empty stomach. Everyone is different. However your doctor prescribes the CellCept is how you should take it:)
Posted 9/21/2018 9:04 PM (GMT -7)
I have been diagnosed with lupus. Right now my rheumatologist is concerned about my kidney function. I take methotrexate once a week and plaquenil and cellcept twice a day and a steroid once a day. I was told to take the cellcept on a empty stomach by my doctor and the pharmacist.
I am trudging on through pain every day. Some days are better than others, but life goes on and I am making the best of each day.
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