Comments on: Goodbye Cellcept http://lupusfamily.com/2009/02/goodbye-cellcept/ Support for individuals whose family or friends have lupus Sat, 10 Mar 2012 18:55:18 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Sharrae http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-33998 Sharrae Fri, 08 Jul 2011 18:30:59 +0000 http://lupusfamily.com/?p=125#comment-33998 Been on prednisone since 1989 plus all the other meds associated with SLE on an intermittent basis. Just switched from Imuran, which caused no problems, and I injected 0.6 mg of methotrexate for the last 3 years. Am now on Cellsept which I've had no adverse effect with hoping to undo some liver damage and lung problems. Am also working with a nutritionist to see if diet will help the inflammation and pain. It seems to alleviate some of the Colitis problems and brain fog which had been frightenly acccelerating. The only thing that really caused severe side effects was methtrexate. Been on prednisone since 1989 plus all the other meds associated with SLE on an intermittent basis. Just switched from Imuran, which caused no problems, and I injected 0.6 mg of methotrexate for the last 3 years. Am now on Cellsept which I’ve had no adverse effect with hoping to undo some liver damage and lung problems. Am also working with a nutritionist to see if diet will help the inflammation and pain. It seems to alleviate some of the Colitis problems and brain fog which had been frightenly acccelerating. The only thing that really caused severe side effects was methtrexate.

]]> By: Kayvee http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-31251 Kayvee Thu, 16 Jun 2011 21:12:58 +0000 http://lupusfamily.com/?p=125#comment-31251 I've had lupus for 13yrs. I have been taking prednizone form day one. I have tried them all plaquenil ,Didronel, cytoxan, Imuran just to name a few. Today I was prescribed cellcept ,I have rash all over my chest and they itch like crazy. I was given a topical cream protopic to relieve the itching . The rheumatologist says it might stop the rashes from developing. I sure hope it works. I’ve had lupus for 13yrs. I have been taking prednizone form day one. I have tried them all plaquenil ,Didronel, cytoxan, Imuran just to name a few. Today I was prescribed cellcept ,I have rash all over my chest and they itch like crazy. I was given a topical cream protopic to relieve the itching . The rheumatologist says it might stop the rashes from developing. I sure hope it works.

]]> By: Marlo http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-30190 Marlo Wed, 01 Jun 2011 03:16:34 +0000 http://lupusfamily.com/?p=125#comment-30190 Thank you for all of your input. I have had Lupus for about 11 years now. I was in remission for about 8 years and a few years ago, I got really sick and have been in this terrible flare up! I was given massive doses of prednisone and gained 60lbs. I was given Methotrexate which caused me to have very heavy menstrual cycles and grow polyps. I ended up have a uterine ablation. They changed my medication to Imuran and I was on it for about 7 months. At first it worked good, but I started to feel weird in my stomach. For months my stomach would growl even while I was eating. I was told I had acid reflex. Then after suffering from this for several months, I started to get really bad pains in my stomach. I ended up in the ER 4 times and all 4 times, they told me I had acid reflex. After so much pain and now throwing up and not able to hold anything down, they did more tests. Turned out I ended up getting pancreatitis from the Imuran and was in the hospital for a month. The only treatment for pancreatitis is resting the digestive system, so needless to say, I did not eat for several months. Had to have a PICC line and I was sent home on home IV. I ended up with 2 more episodes after I was released the 1st time and ended back in the hospital for 2 more weeks for each episode. I thought I was never going to be able to eat again. Good thing I guess out of all of this, I lost my prednisone weight! I refused to take anymore medication after all the bad side effects. I always got the "rare but serious side effects", from all the medications. If the disease wasnt going to kill me, the medications were! I have been off of all drugs for several months now and I am in a lot of pain!! I am back on taking morphine 3 times a day and my doctor had said with me having the pancreatitis, it is now hard to give me medications in fear of relapsing. He had mentioned Cellcept and wanted me to think about taking it. I was very adamant about not taking any more drugs and trying to go the natural way, but that isnt working and I am seriously thinking about Cellcept. Thank you again for all your inputs and I wish everyone good healthy days to come! God bless! Thank you for all of your input. I have had Lupus for about 11 years now. I was in remission for about 8 years and a few years ago, I got really sick and have been in this terrible flare up! I was given massive doses of prednisone and gained 60lbs. I was given Methotrexate which caused me to have very heavy menstrual cycles and grow polyps. I ended up have a uterine ablation. They changed my medication to Imuran and I was on it for about 7 months. At first it worked good, but I started to feel weird in my stomach. For months my stomach would growl even while I was eating. I was told I had acid reflex. Then after suffering from this for several months, I started to get really bad pains in my stomach. I ended up in the ER 4 times and all 4 times, they told me I had acid reflex. After so much pain and now throwing up and not able to hold anything down, they did more tests. Turned out I ended up getting pancreatitis from the Imuran and was in the hospital for a month. The only treatment for pancreatitis is resting the digestive system, so needless to say, I did not eat for several months. Had to have a PICC line and I was sent home on home IV. I ended up with 2 more episodes after I was released the 1st time and ended back in the hospital for 2 more weeks for each episode. I thought I was never going to be able to eat again. Good thing I guess out of all of this, I lost my prednisone weight! I refused to take anymore medication after all the bad side effects. I always got the “rare but serious side effects”, from all the medications. If the disease wasnt going to kill me, the medications were! I have been off of all drugs for several months now and I am in a lot of pain!! I am back on taking morphine 3 times a day and my doctor had said with me having the pancreatitis, it is now hard to give me medications in fear of relapsing. He had mentioned Cellcept and wanted me to think about taking it. I was very adamant about not taking any more drugs and trying to go the natural way, but that isnt working and I am seriously thinking about Cellcept. Thank you again for all your inputs and I wish everyone good healthy days to come! God bless!

]]> By: Tamara http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-28424 Tamara Fri, 13 May 2011 21:14:28 +0000 http://lupusfamily.com/?p=125#comment-28424 I was diagnosed in July 2010 with SLE, after my lungs shut down and I ended up in the ER and the hospital for a week, before they figured out the cause. I have been on methotrexate, predisone, plaqneil and now Imuran.... The doctor's can't figure out why nothing will cure my aches and severe pluersey I get. Now since I have been on the Imuran I feel sick to the stomach, severe headaches and I am in even worse pain then before I started. I hate Lupus, I just want to sit and cry for hours, but I have 2 children I have to take care of and I sometimes don't know how I get thru the day... I was diagnosed in July 2010 with SLE, after my lungs shut down and I ended up in the ER and the hospital for a week, before they figured out the cause. I have been on methotrexate, predisone, plaqneil and now Imuran…. The doctor’s can’t figure out why nothing will cure my aches and severe pluersey I get. Now since I have been on the Imuran I feel sick to the stomach, severe headaches and I am in even worse pain then before I started. I hate Lupus, I just want to sit and cry for hours, but I have 2 children I have to take care of and I sometimes don’t know how I get thru the day…

]]> By: Julie-Anne http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-27812 Julie-Anne Sat, 07 May 2011 07:11:49 +0000 http://lupusfamily.com/?p=125#comment-27812 I've been taking Cellcept for about 6 years now and, honestly, it's worked the best out of any of the immuno-suppressants I've tried and I've had very, very few side effects. My problem now, though, is that it's not working as well as it did previously. I take 3,000 mgs. per day plus 400 mgs. of Plaquenil so I believe I'm at or very near the maximum dosage of Cellcept. For the past year, I've had more flares breaking through. The Lupus seems to be going after my shoulders and hips with a vengeance. I've had three shoulder surgeries in the past 18 months to repair torn tendons and to remove deformities. It's all caused by the inflammation. Complicating matters is that I also have Crohn's Disease. My doctor tried me on Remicade previously which was absolutely wonderful in helping the Crohn's issues but it really set off the Lupus, particularly in my kidneys. I'm basically in auto-immune hell, grrrrr. The only immuno-suppressant I haven't tried is Imuran. I'm wondering if adding Imuran to the mix, perhaps with a lowered dose of Cellcept, might help? I need relief badly. If Lupus isn't raging, Crohn's is and my quality of life right now isn't very good. For those leery of Cellcept, a word of reassurance. It has been magic for me and I've taken high doses for a long time. Just make sure you do take it on an empty stomach so it can work properly. I'm sad that it seems to have lost its efficacy for me but I'm grateful it's helped so much for this long. As for the cost, thankfully it's been available as a generic drug for a couple of years now so the cost is about half of what it used to be. I’ve been taking Cellcept for about 6 years now and, honestly, it’s worked the best out of any of the immuno-suppressants I’ve tried and I’ve had very, very few side effects. My problem now, though, is that it’s not working as well as it did previously.

I take 3,000 mgs. per day plus 400 mgs. of Plaquenil so I believe I’m at or very near the maximum dosage of Cellcept. For the past year, I’ve had more flares breaking through. The Lupus seems to be going after my shoulders and hips with a vengeance. I’ve had three shoulder surgeries in the past 18 months to repair torn tendons and to remove deformities. It’s all caused by the inflammation.

Complicating matters is that I also have Crohn’s Disease. My doctor tried me on Remicade previously which was absolutely wonderful in helping the Crohn’s issues but it really set off the Lupus, particularly in my kidneys. I’m basically in auto-immune hell, grrrrr.

The only immuno-suppressant I haven’t tried is Imuran. I’m wondering if adding Imuran to the mix, perhaps with a lowered dose of Cellcept, might help? I need relief badly. If Lupus isn’t raging, Crohn’s is and my quality of life right now isn’t very good.

For those leery of Cellcept, a word of reassurance. It has been magic for me and I’ve taken high doses for a long time. Just make sure you do take it on an empty stomach so it can work properly. I’m sad that it seems to have lost its efficacy for me but I’m grateful it’s helped so much for this long. As for the cost, thankfully it’s been available as a generic drug for a couple of years now so the cost is about half of what it used to be.

]]> By: Laura Rice http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-26691 Laura Rice Fri, 22 Apr 2011 02:04:57 +0000 http://lupusfamily.com/?p=125#comment-26691 Judith, How is it going? -L Judith,
How is it going?
-L

]]> By: Laura Rice http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-26690 Laura Rice Fri, 22 Apr 2011 02:04:03 +0000 http://lupusfamily.com/?p=125#comment-26690 Hi Everyone--Just wanted to thank those who posted your positive experiences and words of encouragement. To those who are quite sick, I hope there are happier days in your future. I was diagnosed with SLE 20 years ago and after the first few years, we were able to get it under control with plaquenil, occasional stints of prednisone and me paying close attention to my body signals and getting enough sleep. I've had several flares over the years but never had to go on anything else until now. I've been struggling with pleurisy for 6 months and just started on Cellcept. So far I don't have any terrible side effects except for nausea but it does concern me to be on such strong meds. I work with kids 1:1 so there's no staying away from germs but I'll keep my fingers crossed. I don't let Lupus run my life but I try to be careful. Now with a new symptom that effects my lungs, it makes me more concerned but I will not let me stop me from enjoying my life as much as I can. Thanks again for sharing your stories. It's nice to know I'm not alone and to learn from others' experiences. Take care, L Hi Everyone–Just wanted to thank those who posted your positive experiences and words of encouragement. To those who are quite sick, I hope there are happier days in your future.

I was diagnosed with SLE 20 years ago and after the first few years, we were able to get it under control with plaquenil, occasional stints of prednisone and me paying close attention to my body signals and getting enough sleep. I’ve had several flares over the years but never had to go on anything else until now. I’ve been struggling with pleurisy for 6 months and just started on Cellcept. So far I don’t have any terrible side effects except for nausea but it does concern me to be on such strong meds. I work with kids 1:1 so there’s no staying away from germs but I’ll keep my fingers crossed. I don’t let Lupus run my life but I try to be careful. Now with a new symptom that effects my lungs, it makes me more concerned but I will not let me stop me from enjoying my life as much as I can.

Thanks again for sharing your stories. It’s nice to know I’m not alone and to learn from others’ experiences.

Take care,
L

]]> By: Judith Cronin http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-24727 Judith Cronin Tue, 22 Mar 2011 15:01:09 +0000 http://lupusfamily.com/?p=125#comment-24727 Im starting cellcept 3/23/11 and Im terrified. Today is my last dose of cytoxan. Wish me luck please. And, God bless! Im starting cellcept 3/23/11 and Im terrified. Today is my last dose of cytoxan. Wish me luck please. And, God bless!

]]> By: Val http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-24199 Val Mon, 14 Mar 2011 04:26:03 +0000 http://lupusfamily.com/?p=125#comment-24199 I have had sle for 25 years. I got CNS three years ago. I have just recently been put on cellcept. I am also on plaquinel, predisone, sulfasalazine, gabapentin. I have IVIG treatments once a week, to help with the cns. I had lost feeling from my waist down. The IVIG has been a lifesaver. It helps to have others with your condition to share with. For the most part we look healthy, and no one can tell how sick you are and how poorly you feel. I have no side effects from cellcept. I have noticed a great difference in my cns after starting cellcept. I had been on imuran prior to that and my liver enzymes went crazy. I had also been on methotrexate and tolerated it well but it was not helping my cns. Lupus can be a frustrating disease, you must be patient and work with your rheumy to find the best combination of meds. I have had sle for 25 years. I got CNS three years ago. I have just recently been put on cellcept. I am also on plaquinel, predisone, sulfasalazine, gabapentin. I have IVIG treatments once a week, to help with the cns. I had lost feeling from my waist down. The IVIG has been a lifesaver. It helps to have others with your condition to share with. For the most part we look healthy, and no one can tell how sick you are and how poorly you feel.
I have no side effects from cellcept. I have noticed a great difference in my cns after starting cellcept. I had been on imuran prior to that and my liver enzymes went crazy. I had also been on methotrexate and tolerated it well but it was not helping my cns. Lupus can be a frustrating disease, you must be patient and work with your rheumy to find the best combination of meds.

]]> By: ANGEL JACKLYN http://lupusfamily.com/2009/02/goodbye-cellcept/comment-page-1/#comment-22171 ANGEL JACKLYN Tue, 08 Feb 2011 18:00:53 +0000 http://lupusfamily.com/?p=125#comment-22171 THE EMOTIONAL & PHYSICAL DAMAGE OF LUPUS IS SO HEART WRENCHING. I WAS RECENTLY PLACED ON CELLCEPT BECAUSE BOTH MY OPTIC NERVES FLARED UP & I LOST EYE SIGHT IN ONE EYE. IT HAS BEEN 3 WEEKS NOW. I DON'T KNOW IF MY FEET SWELLED DOWN & I LOST 10 LBS BECAUSE OF THE MEDICATION OR BECAUSE OF A "FLARE UP" GOING DOWN. I DO SEEM TO BE LOSING A WHOLE LOT OF HAIR THOUGH. I PERSONALLY BELIEVE I SHOULD BE ON METHALTREXY (SOUND OUT) BUT WE'LL SEE. I LIVE IN MICHIGAN, GO TO THE UNIVERITY OF MICHIGAN & KELLOGG EYE CENTER FOR MY DISEASE. I HAVE ABOUT 16 DOCTORS. I'VE HAD A NEEDLE IN MY EYE, EYE SURGERY, MRI, 2 CAT SCANS, LUNG BIOPSY, OVER 80 VILES OF BLOOD TAKEN, ETC & ALL THE TESTS ARE SHOWING ARE SERIOUS INFLAMMATION. I HAVE A REPEAR MRI, A MRA & SPINAL TAP NEXT WEEK. I'VE BEEN ON THE STEROIDS, WHICH WORKED FOR SO LONG BUT CAUSED REALLY BAD ACNE & WEIGHT GAIN, SO I ABSOLUTELY HATE THEM. I AM SO FRUSTRATED. I WAS GIVEN CELLCEPT IN HOPE MY EYES WOULD STOP REJECTING THEMSELVES. I HAD SLIGHT NAUSEA & VOMITING BUT EVERYTHING'S OK NOW. MY HAIR IS FALLING OUT AT A CRAZY RATE BUT IF THIS MEDICATION IS GOING TO WORK THEN IT IS WORTH IT. LUPUS HAS CAUSED ME TO GAIN OVER 70LBS IN 1 YEAR. I HATE MYSELF SOMETIMES. PLEASE GOD LET SOMETHING WORK. THE EMOTIONAL & PHYSICAL DAMAGE OF LUPUS IS SO HEART WRENCHING. I WAS RECENTLY PLACED ON CELLCEPT BECAUSE BOTH MY OPTIC NERVES FLARED UP & I LOST EYE SIGHT IN ONE EYE. IT HAS BEEN 3 WEEKS NOW. I DON’T KNOW IF MY FEET SWELLED DOWN & I LOST 10 LBS BECAUSE OF THE MEDICATION OR BECAUSE OF A “FLARE UP” GOING DOWN. I DO SEEM TO BE LOSING A WHOLE LOT OF HAIR THOUGH. I PERSONALLY BELIEVE I SHOULD BE ON METHALTREXY (SOUND OUT) BUT WE’LL SEE. I LIVE IN MICHIGAN, GO TO THE UNIVERITY OF MICHIGAN & KELLOGG EYE CENTER FOR MY DISEASE. I HAVE ABOUT 16 DOCTORS. I’VE HAD A NEEDLE IN MY EYE, EYE SURGERY, MRI, 2 CAT SCANS, LUNG BIOPSY, OVER 80 VILES OF BLOOD TAKEN, ETC & ALL THE TESTS ARE SHOWING ARE SERIOUS INFLAMMATION. I HAVE A REPEAR MRI, A MRA & SPINAL TAP NEXT WEEK. I’VE BEEN ON THE STEROIDS, WHICH WORKED FOR SO LONG BUT CAUSED REALLY BAD ACNE & WEIGHT GAIN, SO I ABSOLUTELY HATE THEM. I AM SO FRUSTRATED. I WAS GIVEN CELLCEPT IN HOPE MY EYES WOULD STOP REJECTING THEMSELVES. I HAD SLIGHT NAUSEA & VOMITING BUT EVERYTHING’S OK NOW. MY HAIR IS FALLING OUT AT A CRAZY RATE BUT IF THIS MEDICATION IS GOING TO WORK THEN IT IS WORTH IT. LUPUS HAS CAUSED ME TO GAIN OVER 70LBS IN 1 YEAR. I HATE MYSELF SOMETIMES. PLEASE GOD LET SOMETHING WORK.

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