View Full Version : Cellcept - typical dose

11-27-2010, 07:35 AM
What is a typical dose of cellcept? My son, Justin, moved from cytoxan To cellcept at the end of October. His pulse has been elevated, over 110 most of the time, he sometimes is nauseous and is light headed with headaches. He is on 1000mg AM and PM. He is 15 and weighs 120.

11-27-2010, 08:11 AM
That sounds like a fairly typical dose to me, but I've had a transplant so requirements may be different.

11-27-2010, 08:16 AM
That's the usual dose. It isn't weight-related but I don't know if his young age makes a difference. Cellcept can cause acid reflux, but it's usually not that bad.

What do his docs say about the high pulse and light-headedness? The cause needs to be found and resolved.

11-27-2010, 08:22 AM
Hi Theresa, I cannot say what a typical dose of Mycophenolate is as I can only relate my own experience. I was put on this drug almost from diagnosis as the same doseage as your son Justin. I am nearer 60 and double his weight so no fair comparison there! I dont recall feeling nauseous or light headed but it was over 2 years ago. The syptoms could be related to the drugs, his stomach or even his ears. Is he taking something like Omeprazole to protect his digestion?

11-27-2010, 10:58 AM
I'm 17 and weighs around 50 kg. I'm on 500 mg twice a day, but I've been told that my dose is relatively small..

11-27-2010, 11:14 AM
Thanks, everyone. Sounds like his dose is not out of the normal. So far we have been directed to work with the Nephrologists to see if it is his blood pressure meds. He has been off of both lisinopril and losartan since Monday with no improvement to heart rate, lightheadedness, or headaches. We see the Nephrologist on Thursday. They will probably put him back on at least one of the bp meds.

So I will call the rheumy's to start trying to see if it is the cellcept or something else. they want blood work on Monday so I'll talk be talking to them about that too. I'll keep you posted.

11-27-2010, 11:33 AM
I am on 2000 mg of cellcept a day and that is the standard dose. Like Sangye stated need to find out why his heart rate is up.... It could be a side effect to one of the medicines he's on, and he should probably get a echo cardiogram done too. My heart rate was up after my transplant and I have been on tenormin ( atenenol) for years and it keeps my pulse around 55-65 bpm.

11-27-2010, 11:34 AM
I currently am taking 1500mg morning and 1500 in the evening. As far as the lightheadedness...at first when I made the switch I did notice some quirkiness but after a month was fine and have been on Cellcept for over 1-1/2 years.

11-27-2010, 02:22 PM
was on cellcept to for over a year myself i never had these problems. but u should get it checked out.
I am now off of cellcept for about 1 month so far so good
I wish you goodluck and keep us posted.

11-27-2010, 03:21 PM
1500 mg twice per day - adult female. I worked up to this and it has worked really well.

11-30-2010, 02:03 PM
I took Justin to the ER today. *I'm glad we came here, they have admitted Justin. *His hemoglobin level had dropped from 8.1 to 4.7 in 2 weeks. They have done a bunch of tests but have not yet determined the cause. *He is getting 2 units of blood tonight.*

I am concerned that this might be due to the cellcept. *

Theresa (Justin, 4/2010)

11-30-2010, 03:15 PM
Oh no... No wonder his heart rate was so elevated and he was light-headed-- both very common with anemia. Why was his hemoglobin so low to begin with?

Have they done a chest CT? They should be looking for alveolar hemorrhage. Does he have a cough, even a small dry cough?

11-30-2010, 03:25 PM
Thanks, Sangye. They have been treating him for Anemia with iron for the last few weeks but prior to that, not really worried about it. So I don't know why it was so low. it has been between 7 and 8.5 since April. They have not done a chest CT - I will ask for that. No cough at all. They did an EKG and that was ok. They do hear a flow murmur which is probably due to the anemia.

11-30-2010, 03:30 PM
I hope they can figure it out. Both times my lungs have hemorrhaged I barely had a cough. No one would even call it a cough, just sounded like a little tickle in the throat. I'm glad he's in the hospital so they can keep him safe while they figure it all out. Take good care of yourself, Theresa.

11-30-2010, 03:32 PM
Thanks, Sangye. I'll ask about that and watch for a cough.

11-30-2010, 10:59 PM
Theresa, how is his kidney function? That can cause anemia. Hope they find out soon to what's going on with Justin!

12-01-2010, 12:15 AM
His creatinine is 1.6. I'm going to ask more questions about kidney function today.

They just woke us up and took Justin for a chest Xray. Not a CT but I'm glad they are looking at his lungs.

12-01-2010, 02:09 AM
With active Wegs, the 2 most likely places for him to be losing blood are lungs or kidneys.

I'm glad they're doing a chest x-ray. If they see anything that looks like "atypical pneumonia" or "infiltrates" make sure they do a chest CT. That's what bleeding in the lungs can look like on x-ray, though many docs don't seem to know it. When my lungs were bleeding in the past my x-rays only looked a bit off. The CTs looked horrible, though. Alveolar hemorrhage on a CT looks like "ground glass opacities"-- a fancy name for solid grey.

They may find something but think it's not "enough" to be causing problems or to be Weg's-related. If that happens, question it. Last year I was discharged from the hospital with bleeding lungs because the non-Wegs docs said there would be more blood if it were Wegs. Dr Seo said any blood in a Weggie's lungs is due to Wegs.

12-01-2010, 03:30 AM
Justin's creatinine is a little elevated esp someone his age. They need to check more into the kidney too, along with the lungs. Have they done a stool sample to see if there is blood in it. With all the meds he's on it ...can cause some bleeding.

12-01-2010, 08:56 AM

My daughter is 15 yrs old and has been taking cellcept 1000mg AM and PM since June. So far she hasn't had any problems with it. She had 3 months of IV cytoxan in the hospital and we had a hard time getting her blood pressure/heart rate controlled but eventually they returned to normal. I am glad you have Justin at the hospital where they can take good care of him!! Sounds like he's got something going on.

12-03-2010, 01:32 AM
He came home from the hospital last night. His kidney function is about 70-80% according to the nephrologists (creatinine is 1.6). Justin is now getting EPO shots once a week. After 5 pints of blood he looks and feels better than he has in a long time. We have hematologists to add to the team of doctors now. They said that after examining his red blood cells in the lab, that they are damaged and they believe that is due to the cellcept. The rheumy's don't want to take him off (at least not yet) so we are going to monitor closely. He is taking iron and getting EPO shots to stimulate red blood cell production.

Something that we learned that we did not know is that when he takes iron, he should NOT take it with milk, he should eat some meat with it, and he should not lay or sit down immediately after taking it. Otherwise his body will not absorb it. Up to now, he has always taken it with milk and then gone to bed.

His Hemocrit was 32.7 and his Hemoglobin was 10.6 when he left the hospital last night. That is the highest for either since he was diagnosed with WG. His B12 and Iron levels are ok. We are still waiting the results of the Parvo virus test (did not know humans got Parvo). If he does have that, it will keep destroying his blood cells until he gets over it.

Thanks for all the support.
Theresa (Justin, diagnosed 4/10)

12-03-2010, 01:38 AM
good to hear he is geting the help he needs take care of yiou all DEEx

12-03-2010, 02:15 AM
Glad they figured it out, Theresa. I wonder how the cellcept is causing RBC damage?

The prescription instructions that come with his iron should mention the milk and the other restrictions. In general, don't take any meds with dairy, calcium or magnesium supplements, as these can prevent them from being absorbed. If he wants something other than water, a little juice is the best bet.

The human parvo virus is different from the one dogs get, so you don't have to worry about him being around dogs or anything (in case you were worrying about that!) :smile1:

12-03-2010, 02:23 AM
I wonder how the cellcept is causing RBC damage?

After a quick Google, I'll answer my own question.... A reaction to any med can cause hemolytic anemia. Interestingly, cellcept has been used to treat autoimmune hemolytic anemia.

12-03-2010, 02:33 AM
Wow, thanks for the update and glad Justin is feeling better. I learn something new every day!

12-08-2010, 04:10 PM
Glad that Justin is getting better. One thing about pets, there is a parasite disease called toxoplasmosis, I contracted it from either bunnies or cats (most likely), or dogs (had all at the time) before getting pregnant. Please make sure you have your vet do a thourough checkup on your canine or feline friends.