? about cellcept

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jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/17/2008 3:57 PM (GMT -7)   
Just started it and have questions. How fast did people see results with it? did you have to build up to a certain amount? How long were you on it? 
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, Imuran, noratriplyine.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 7/18/2008 6:37 AM (GMT -7)   
Hi JessieRose. I started CellCept Jan 15, 2008 for severe cognitive disfunction that included confusion, stuttering, and double vision. I tapered up to 1000mg twice a day which is my current dose. I noticed an improvement about 4 weeks after I started taking CellCept and I continued to improve. I've been taking it 6 months. I still have some symptoms, but I'm much better than I was. I hope it works for you! Love, Butterflake. 

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, wellbutrin, seroquel, xanax, ambien, celebrex, neurontin, lyrica, arthritis tylenol, promethazine, actonel, multi vit, C, flaxseed oil, acupuncture
Donna
 


misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 7/19/2008 11:19 PM (GMT -7)   
hey there I have been cellcept for over a year now and it has been a really great medicine for me. i take 1250 mgs of cellcept twice a day and I dont think I have had any adverse side effects....it has allowed me to taper on my prednisone so i am very thankful for that...
I dont know if it is the cellcept because I take lots of other medications as well but when I wake up i need to eat something otherwise i will feel sick and nauseous...i know you are supposed to take cellcept on an empty stomach but i dont think i can.
I also seem to have some kind of irritable bowel or a very sensitive bowel which is kind of annoying but im not sure exactly what the cause is...
let me know how it works for you!

misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 7/19/2008 11:21 PM (GMT -7)   
i forgot to answer your questions! I just started on the dose I am, no need to taper up or anything...when I have some symptoms of a cold or something my doctor usually has me stop taking the cellcept for about a week so that my body has a little bit of a chance fighting off the virus....
i think cellcept can take several months to finally start seeing results in bloodwork etc but i think it is worth the wait and it has done a lot for me.

jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/20/2008 6:18 AM (GMT -7)   
How long have you been on it? Do/did you have kidney problems is that why they put you on it? or just your blood work was crazy.

JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, cellcept..


DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 90
   Posted 7/21/2008 9:56 AM (GMT -7)   
I have been on CellCept for about 2 yrs now. I started low and worked my way up to 2000mg twice a day. At the time, I was seeing Drs monthly, and saw a slight improvement at the first appt after I started it. My kidney function is now almost completely back to normal. I hope it works as well for you as it did for me. Good luck!


Lots of Love!
DQueen
 
 
 
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure

Post Edited (DQueen) : 7/21/2008 12:31:49 PM (GMT-6)


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/21/2008 12:14 PM (GMT -7)   
That is good to hear, I will be on 2000mg in a couple of days. did/do you have any side effects from it?
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, cellcept..


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/21/2008 12:37 PM (GMT -7)   
I was on 3000 mg daily (1500 am & pm) for just over a year -- ramped up to that amount and then ramped down at the end of the course of treatment.

I never had any side effects at all with any dosage. The Cellcept helped immensely with my cognitive dysfunction -- I consider it my miracle drug.

Hope you have good results,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/21/2008 2:21 PM (GMT -7)   
thank you for all the replies. what did you have for cognitive issues
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, cellcept..


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 8/1/2008 6:06 PM (GMT -7)   
Jessie Rose,
I did not have any signs of a kidney problem but my Rheum. Rxd CellCept. I was on CellCept for 1 month at 1000mg then went to 2000mgs. The second week on the higher dosage I broke out in hives (which I have never done for anything before) so they took me off it for 1 week and then to go back at 1000mgs.
When I went back @ 1000 I felt nausious and had congestion and my sinus' hurt. So I am off it all together. I just take 400 of the Plaquenil, coumedin, asiphex, diovan, advil, synthroid, Vit D rxd, calcium.
Hope you find good results with the CellCept, you never know if you don't give it a try.

Carol

jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 8/2/2008 4:20 PM (GMT -7)   
I have been on it now for about two weeks,and I feel awesome I also had to increase the predisone to so it could just be that.. But I havent felt this good in a while. 

JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, cellcept..


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/2/2008 5:25 PM (GMT -7)   

Jessie,

     Glad to hear that you are doing so good.  I took it for renal involvement and it didn't help.  I also had extreme diarrhea and nausea.  I lost alot of weight.  My nephrologist says alot of people are having extreme success with it.  I hope you continue to do really good.  Why did you go up on the prednisone?  Cellcept is suppose to enable you to lower it.  God Bless You, Judy


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 8/2/2008 6:41 PM (GMT -7)   
I was in the process of decreasing the predisone and was on Imuran, and I ended with pluersy and having a flare. so they switched me to cell cept and doubled my predisone. Like I said I think its more the predisone right now because its only been a couple of weeks and I have been having diah. thats really it I have gained a couple pounds from the predisone im going to assume but I lmost feel like mtself again I have been going back to the gym and running. Im scared to start the decrease again but I have to wait until my blood work is all negative then I can start to decrease
:-)  
JessieRose
 
 
SLE, APS, Food Allergies, Gerd, Migrains
Prilosec, zoloft, Plaquenil, asprin, predisone, cellcept..


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/3/2008 10:04 AM (GMT -7)   
My doctor put me on 2,000 mg of CellCept and I felt better than I had in years. More energy and Much better cognitive function. But after a few weeks my kidney functions started to be affected negatively by the CellCept so she had to decrease my dosage to 500 mg. I was so disappointed but even the small dose helps. I've had no other negative side effects. I hope it works for you!
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 8/5/2008 11:36 AM (GMT -7)   
Today my Rheum put me back on CC to take 1000 for 2 wks then 1500 from then on. I will see what effects if any I get. She said I really needed it to control the disease. Also told me that shortage of Vit D is common among Lupus patients and will probably be on it for the rest of my life....she is following up with blood tests every 2 mos.
Just hope I find the success the others here have had with it.

Plaquenil, coumedin, asiphex, diovan, advil, synthroid, Vit D rxd, calcium supp, cellcept, cymbalta, multi vit, flaxseed oil

Wattsnex
Regular Member


Date Joined Nov 2006
Total Posts : 27
   Posted 8/8/2008 7:52 AM (GMT -7)   
This first day back on CC I broke out in hives again.
Has anyone else had that experience? She took me off again for good.

Plaquenil, coumedin, asiphex, diovan, advil, synthroid, Vit D rxd, calcium supp, cymbalta, multi vit, flaxseed oil
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