Comments on: Goodbye Cellcept

By: sarah

sarah — Fri, 11 Jun 2010 13:21:11 +0000

Hi
i’ll start this by saying that I’m from England and so the cost of the drugs is not an issue for me. I’ve been on various immunosuppressents since being diagnosed with Lupus and was on Azathiaprine for years, but then about four years ago was put on Cellcept. My Lupus was so much better with the Cellcept, that my GP was prepared to keep me on it despite the cost (to the surgery). I’m now trying to get pregnant so have been back on the Azathiaprine for a couple of months and although I have had the test that shows that I shouldn’t react too badly too it, in the past my white cell count and platelets were low. My Rheumatologist is keeping an eye on these now.
Anyway, I hope your wife is doing okay on the Azathiaprine now.

By: Lola

Lola — Mon, 07 Jun 2010 23:16:31 +0000

I have read the above comments, and feel sheepish in adding my 2 cents worth, I was diagnosed about 18 mo ago, and they have me on quinine. My most annoying symptom is hair loss, I don’t want to take anything else, as the side effects are worse than my complains. I also have skin rash, but not really anything to complain about, yet.My blood work isn’t the best , but I try to eat healthy, and hopefully that helps, I dunno. I am positive I got this Lupus when I took Zyrtec, but no one agrees with me, but that was the only thing I took.

By: Jayne

Jayne — Tue, 25 May 2010 07:12:16 +0000

Hello my brothers and sisters! Thank you for this amazing website. I have had SLE for almost 5 years…drug an oxygen tank around for about 2 years…prednisone was a staple med at high doses and I developed Cushings from the steroids as well as adrenal insufficiency. I was on methotrexate, imuran , one I cant recall and then the doc put me on Cellcept to be taken along with the prednisone of course. I am sooo happy to encourage you that I was able to be pulmonary rehabbed,no more oxygen pump, no longer have to take Cellcept , (altho my docs said don’t throw it away) and against all odds, I have been weaned off of prednisone! My rheumy said I would never make it down lower than 7 mg but with the help of an endocrinologist and God’s will, I am off of it! It would take 6 months just to work off 1 mg. of the stuff. I am only on Plaquenil at this time…I would take CellCept in a heartbeat…I did have nausea and some vomiting and diarrhea but I am still standing and fighting this disease. My lungs have some fibrosis and I am limited to some extent, I still haqve the damage Lupus did to my vestibular area so I have labrynthitis but I am writing to you all! Keep the faith and keep your “dukes” up. AND may God bless the husbands and wives of my fellow lupus friends as my fiance left me to go on vacation to Germany while I was still in ICU! Kudos to you!

By: dach'e

dach'e — Mon, 22 Mar 2010 05:13:16 +0000

I AM 19 YEARS OLD. I WAS DIAGNOSED WITH LUPUS WHEN I WAS 16. I STARTED OFF TAKING PREDNISONE AND 2 OTHER MEDICATIONS. ALTHOUGH I ACTUALLY DID REALLY WELL ON THE PREDNISONE MY DOCTOR DIDNT WANT ME ON IT VERY LONG. AFTER A WHILE MY DOCTOR TOOK ME OFF OF THE PREDNISONE AND PUT ME ON IMMURAN AND PLAQUENIL. I WAS ON THESE 2 MEDS FOR ABOUT A YEAR AND A HALF. THE RESULTS FROM MY BLOOD WORK WERE NOT UP TO STANDARDS SO MY DOCTOR TOOK ME OFF THE IMMURAN AND PUT ME ON CELLCEPT AND PLAQUENIL. I HAVE BEEN TAKING THESE 2 MEDICATIONS A LIL OVER A YEAR NOW AND THEY WORK GREAT FOR ME. WHEN I WAS FIRST DIAGNOSED WITH LUPUS I COULD BARELY WALK, MY BONES ACHED, AND I WAS ALWAYS FREEZING WITH CONSTANT HEADACHES AND FEVERS. I AM CURRENTLY TAKING 200MG OF PLAQUENIL AND 500MG OF CELLCEPT. OTHER VOMITING ONE TIME, I HAVEN’T HAD ANY SIDE EFFECTS. I AM LIVING A HEALTHY LIFE AND I ALWAYS PRAY TO GOD THAT I WILL GET BETTER AND LET HIM KNOW THAT I KNO HE CHOSE ME TO HAVE LUPUS BECAUSE HE KNOWS THAT IM STRONG ENOUGH TO FIGHT IT.

By: PattySage

PattySage — Mon, 01 Feb 2010 22:13:39 +0000

I’m sorry to hear that this disease has destroyed alot of peoples lives.I have stage 6 lupis were the doctors told ME I would never work and my husband would have to take care of me.I would like to say I’m on alot a meds including cellcept and I had protein through out my body.I had high blood pressure and the list go on I to thought I was having HEART ATTACK,BECAUSE ALL THE PREnisone i WAS ON .bUT WHEN THEY TOLD ME I WAS going to be disabled,I said hell no I found a job working as a chef and never stopped yet I work 9 hOURS a day and life is good.iT’S MINE OVER MATTER,BECAUSE THE MINUTE THE DOCTORS TELL YOU ALL THIS NEGATIVE STUFF YOUR MIND RACES AND THE MIND DESROYS.aND YOUR HEARING IT FROM A WOMEN WHO ACUALLY DIED IN THE EMERGENCY ROOM AND WHEN i CAME BACK i WAS IN A COMA!for two weeks this has been my battle but I keep working out I body build and run on my treadmill for an hour!!!I just keep living!!And last but not least I put my lord jesus firstI PRAY FOR STRENGH IT WORKS,TRY IT.GOD BLESS ALL OF YOU!!

By: Mike LeBro

Mike LeBro — Tue, 22 Dec 2009 23:10:52 +0000

Great post! I will definitely be reading more of your site more often! This is a great article on arthritis!

By: Gale

Gale — Thu, 10 Dec 2009 09:44:11 +0000

@Jeff feb09 @MaReVeilleVie How is the platelet count now? What did you do? Worked? Don’t DO? My doctors have increased my Cellcept. I have made it up to 80 but was a slow as 7. One doctor told me not to super careful don’t hit your head, sneeze or floss my teeth. Walking acoss an icy parkinglot is a whole new sport. Any ideas would be appreciated.

By: Cole

Cole — Sun, 15 Nov 2009 14:58:09 +0000

I have been on Imuran for about 6 months for SLE Lupus and have had pretty good results. Before starting the Imuran I was on Plaquenil and predisone but had no luck. When I started the Imuran I did experience nausea, vomiting, and headaches. These side effects will get better but it took me about 3 months and still experience some of them.
***Lupiejenn…my dr put me on Imuran instead of Cellcept so I can have children. I have read many blogs about people switching from Cellcept to Imuran and they all seemed to have good results. I wish you good luck!

By: lupiejenn

lupiejenn — Sun, 25 Oct 2009 01:43:29 +0000

I have been on the max dosage of Cellcept for well over a year, diagnosed in 2005. My husband and I desperately want children and the Cellcept has helped get my kidneys under control. Does anyone have experience in changing from Cellcept to Imuran in order to have a child? Would love some first hand perspectives…

By: karen james

karen james — Fri, 09 Oct 2009 00:00:28 +0000

I just started cellcept. I have had lupus for atleast 10 years and I want to get off of the presnodone. I was wonder if my body will begin to do what it is supposed to do if I get off of the medication? Have any one heard of the Human Fetal Stem Cells to help with Lupus patients? Medra’s Medical director William C. Radar