STOPPING TAKING CELLCEPT!

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Kookla
Regular Member


Date Joined Mar 2005
Total Posts : 401
   Posted 11/28/2007 2:26 PM (GMT -7)   
I have been in kidney remission for a year or so and I am still on a super high dose of cellcept. 25000 MGS a day...
There are days that I forget to take the five pills... but for the most part I generaly remember... but I think I am just done with it.. I just dont want to take them anymore... I had to chop 8 inches off of my hair.. my skin looks like crap and my hair has thinned out and its not really just the physical looks that its affected.. I just am tired of taking them.. I want to be done with it.. So I am going to just stop taking them. period. I know I should talk to my Kidney doctor first.. but I just dont want to.. Do you think I would really get that sick?
 
 
FRUSTERATED

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/28/2007 2:49 PM (GMT -7)   
Sounds like the kidney doctor is the place to go with this question - from my research before taking Cellcept, this sounds like a HUGE dose unless you are trying not to reject a kidney transplant.

(I think you might be taking 5 pills x 500 mg which would be 2500 mg which is relatively normal dosing for lupus patients.)

I do know this is a somewhat harmful chemotherapy, and that most places recommend only taking it 1-2 years.

I wouldn't stop suddenly, but do ask your kidney doc.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/28/2007 4:53 PM (GMT -7)   
I worry that stopping so suddenly could cause you to get sick or start flaring. I hate that most meds used to treat lupus are so hard on our bodies, but please do talk to your doc. My guess is that if you reallyy want to get off of the Cellcept, your doctor will work with you. I think a lot of us can relate to your frustration about taking meds and dealing with the side effects.

Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/28/2007 5:22 PM (GMT -7)   
Hey Steph,
 
You should definitely NOT stop cold turkey.  There's a good reason why you're in remission. It's the meds!  Talk to your kidney doc, or rheumatologist and see if a lower dose would be a good idea.  Even coming down by one pill might help your hair and skin to rejuvenate, right!  I know you're frustrated.  But think rationally about this one okay!  Like the other ladies have said, if you stop taking your meds, you will not be in remission anymore.  You and I know each other pretty well don't we :)  Just stop and think what you just wrote down here okay.  I know, that you are frustrated.  But I also know you're very bright and have a good grasp at what your condition is, and what your reality is.  If the shoe was on the other foot, I know you'd tell me to smarten up and get some doctor feedback and instructions before taking this possibly dangerous step!
 
I'm trying to look out for you sis.  I care about you and we've known each other a long time here! I hope you take my advice as words of love and care, and not criticism.  That's not the tone I want this post to have!  (((((((((((((((HUGS))))))))))))))). 
 
Take GOOD care of you Steph.  Keep us informed okay,
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Kookla
Regular Member


Date Joined Mar 2005
Total Posts : 401
   Posted 11/28/2007 6:12 PM (GMT -7)   
Ginny
Yea I know... I know.. I am just so tired of them. Tired of all of the medications. Not just the Cellcept. Sick of it. I feel like I have been on it for an eternity. I dont cancell doctor appts or reschedule... I go to all of my appts... and I see my nephrologist in December.. last time I talked to her she said in April 2008 she would consider bringing it down a dose.. Like a whole pill.. gee wiz... I practically forget that pill anyway. I try to remember but I dont always... She said that when I am ripped off things too fast I relapse.. like that is what happened with the prednisone... I got all crazy and every time she said I could go down five milligrams... I would go down to 10.. then I would start spilling protien again... But I just feel like I have been doing so well on all my kidney testing that I think she should reconsider this now before I take myself off of it.. Yes I am the one who will pay the price, not her.. I know that.. Just so annoyed.. I also have a new insurance next year.. NOt by choice... and its my only option where I work.. I have to take it.. or I will have nothing.. Its a high deductible health plan.. so I will be paying out the butt in January for these stupid pills... Oh joy joy joy!

You are right though... Im sure I would tell you the same thing. I guess I am feeling sorry for myself and just want to be normal.. Even though I know I never will be.. I want to try to be. stupid..

Thanks for listening Ginny.. I dont take anything anyone says as criticism here.. especially you... we are forever bonded girlfriend!
How are you feeling Ginny? Last time we talked you had been thru some seriouse junk... how are you today? Did you have a good Thanksgiving?

Thanks to everyone else too..

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/28/2007 10:31 PM (GMT -7)   
Steph, I struggle every day with the same feelings you have right now.  I just want to be normal.  I feel like I've been on prednisone and Imuran for eternity too.  Then I shake myself out of the funk and realize that without these meds, I'd be dead.
 
This disease really challenges our patience. We're forced to endure flare after flare, issue after issue, doctor appointment after doctor appointment, blood test after blood test.  It's an awful lot to manage.  Ever feel like lupus has become a very serious full time job?  I laugh at myself now and say, "I have two full time jobs.  My photography, and my lupus."  It's so true. 
 
I think over these last 7 almost 8 years, my patience has been tested the most. It's also been strengthened to a point that amazes my family and friends.  When you can just give up the need to be in control of all this, it is incredibly freeing.  You do your best to follow your doctor's advice, and you do your best to take your meds on time, every day.  You eat well, and exercise when you can.  You do everything possible to maintain a possitive attitude, and you do your best to help others in greater need - you will find peace and joy.  You will be able to get through the hard days, even if you still need to have a good cry.  You get through it.  You find a way to cope and to stay encouraged.  The only way to do that, is to be patient, and do your best.  You will be rewarded.
 
Don't forget how HUGE a baby step is with our meds.  Coming down one whole pill is a big deal!  Coming down 1mg of prednisone is a big deal.  These are powerful drugs.  Take it slow and steady.  That's what I've done, and it's paid off!  I was in remission for 4 years, but only because I did what I was told!
 
It's okay to have these feelings Steph. It's healthy to go through the grieving.  You're angry right now, and sad. Those are steps in grieving. Go through it.  Do it, feel it.  Be mad.  Get it all out.  Then get determined to get well.  Fight this.  Don't let lupus win. Be a warrior!!! LOL.  Be a fighter who is positive and encouraged and lifted up!  We can all be that way.  It's a choice.  We can't change our reality.  We have lupus and it blows.  It blows really bad.  But let's be victors in this!  I hope this is encouraging for you.
 
I'm having a GOOD day today.  I found out that I do not have diabetes and I don't have hypoglycemia!  My low blood sugar symptoms are completely harmless!  I was at the blood sugar testing unit all day today.  Everything turned out perfect.  My pancreas works perfeclty.  I just have to manage my anxiety to avoid making these symptoms so bad.  Finally, something in my body is working correctly, LOL!  Halleluia!  I'm doing pretty well after that drug allergy in June.  My hair has stopped falling out and is growing back in now.  Inch and a half long pieces of hair that stick straight up. PRETTY!!!  My blood coagulation (APS) is back to normal levels now too.  So my blood thinners are nice and steady.  No more 3 times a week to the lab!  So things are making a positive comeback.  I'm feeling really good today tongue .  yes, I had a very nice Canadian Thanksgiving back in October!  Now we're all ready for Christmas.  Including the blasted cold weather!  Did you have a nice Thanksgiving?  I'm glad you let us know how you are doing.  It's important to support each other.  yeah, we are bonded girlfriend!!!  Love ya!
 
Ginny
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 11/29/2007 10:22 AM (GMT -7)   
Koola, that sounds horrible. I'm on cellcept myself, 3g a day for three months so far, and honestly what you just said is scaring me. But isn't it better to have crappy skin and thinning hair than begin sick? Don't just stop taking it. I'm all for experimenting and skipping a day to see how you feel, but you have to think about the long term effects. Thats where your doctor comes in. So go talk to him first. I hope everything works out! I see my future in you as a fellow cellcept taker! Take Care.
21 yrs old - Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, spironolactone, nexium, furosemide, oscal + d


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 11/30/2007 11:38 AM (GMT -7)   
I know how you feel I am curently taking 3000 mg of Cell Cept. My hair also started thinning as a result of that and the prednisone. My hair has started to grow back though the prednisone has been lowered. I would encourage you to consult with your doctor before altering your medicine dosage. I know I hate taking medicine as well.
Loving Life 


Kookla
Regular Member


Date Joined Mar 2005
Total Posts : 401
   Posted 12/1/2007 10:28 AM (GMT -7)   
Mellissa
You know what Melissa, dont listen to me.. I am just being a pain in the butt. Cellcept is really all not that bad. I have just been going through some rough times lately. Alot has been going on in my family. My Grandma had a stroke last year, has no short term memory... then just last month diagnosed with end stages lung cancer.. has holes in her bones in her leg. THey just put a medal rode in her thigh.... now she developed Diverticulitis and that was being treated by antibiotics. Well those were not working... They did surgery. They had to remove a portion of her bowls as it had developed a shield or something and poison was being released into her stomach causing her to be even sicker.. she now has a bag for her colon. They said it can be reversed eventually when she is better... but when and if that happens who knows.. when she heals she has to start chemo.. she has already had radiation... SO I THINK that my meltdown has been because of this.. I just started feeling sorry for myself... so please do not listen to me rant about Cellcept. To be perfectly honest with you it has saved my life. My kidneys were not functioning.. I was a sick sick girl.. Yea my skin kinda sucks but I do the best I can... I always go twice a week and get a mystic spray on tan... I chopped my hair off into a super A line cut... highlights.. blonde, brown,,, and light blonde.. its kindof like a Jenny Mcarthy Cut... I have gotten so many compliments on my hair.. I let it go tooo too long and it was getting thinner from the meds and from stress and just from Lupus itself... So To say that this is all Cellcept and its bad bad bad.. is wrong. Cellcept is a mirical drug... Dont listen to my post... FIght back like Ginny said.. be a warrior.. You can do it... I hate pills too... Hell I just called in my refills and the pharmacy disconnected me because I had to many pills LOL.. so I call back to refill the rest.. but hey it is what it is and I am alive today and I am a fighter. I was just having a pitty party and its over.. That is over.... Dont let what I said affect you taking your Cellcept. You need it and you wont be on it forever I bet... Just hang in there and you will be ok.. listen to these girls that are positive and fighters.... Especially Ginny. She is my hero... I was so down when I posted. After reading Ginnys message my spirits were so lifted... Shes a good soul.. everyone here is.. I love you all!
Steph

Kookla
Regular Member


Date Joined Mar 2005
Total Posts : 401
   Posted 12/1/2007 10:32 AM (GMT -7)   
Thanks Ginny! Big hug for you and I am sooo happy about your news and that you dont have diabetes.. THAT IS GREAT! SO HAPPY FOR YA! You should celebrate! You need some cheesecake or something girl! I will send ya some!

Steph
Take Care girl

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/2/2007 5:48 PM (GMT -7)   

Steph, are you trying to make me cry? LOL.  You are so kind to say what you did.  ((((((((((((((((hugs for Steph))))))))))))))))))).  I don't think anyone has called me their hero before.  It's very humbling.  I just take what God gives me and try to help others with the same things I'm going through.  Thanks Steph.  What you said means a lot.

I'm so glad you are coming out of your funk.  When I first read your initial post, I was so shocked that it was you writing it.  It just wasn't the Steph I know!  It's okay to be in a funk.  We all have to be in one every now and then.  But what you did was the healthy thing.  You didn't stay in that funk.  You got yourself out of it.  I think there will be a lot of people here who will take your experience as a positive example and apply it to their own lives.  You're a hero too.  We all are here!

Hahaha! I'd love a piece of that cheesecake you offered!  But if I eat any of it I'll be pooping till the cows come home!  I have a pretty nasty dairy allergy.  Unless that is soy cheesecake you have!!  Thanks!! LOL!

You take care too girl,

Ginny


I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted Yesterday 3:42 PM (GMT -7)   
Steph, that's good to know. I'm having a bit of hair trouble myself and I was wondering if it was the cellcept. I've always kept my hair shortish and recently I decided to grow it out. It's nice and long, but since I got sick again it's starting to fall out in bundles and I think I'll have to cut it again. You said you got highlights and stuff. I want to do something like that too, but I'm worried that the color chemicals would make my hair worse.

When I first got into this flare that I'm in right now, I felt so alone and misunderstood. This board really helped me out a lot. Everyone here is so nice and so strong. You're right about everyone here being warriors! Take care!!
21 yrs old - Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, spironolactone, nexium, furosemide, oscal + d


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted Today 1:01 PM (GMT -7)   
Hi Melissa,
You are not alone I really got said when my hair started coming out. I got a really short hair cut. It has now started to thicken back up and it is growing back. I don't know if it was my body adjusting to the Cell Cept or because the Lupus was extremely active. I am still taking Cell Cept and my hair is growing back .
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted Today 9:09 PM (GMT -7)   
My hair thinned a lot with Cellcept of 3000mg, and started filling back in when I dropped to 2000mg. My hair seems to have changed texture, but I don't know if that's Cellcept, menopause, or because it's turning gray!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 12/7/2007 10:22 AM (GMT -7)   
Hi lupus fighter, I started with 60mg of prednisone a day, and now I'm down to 5. I should be completely finished with it soon (yay!). The prednisone drop didn't make any changes in my hair though. It just fell out even more.
Lynnwood, I hope to have a drop in cellcept soon. I think I'm doing better, let's hope my doctor believes so too. I hope when it drops my hair starts to fill back in. If I may ask, I see that you don't have nephritis on your list in your signature. What are you taking cellcept for?
21 yrs old - Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, spironolactone, nexium, furosemide, oscal + d


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/7/2007 10:56 AM (GMT -7)   
My Cellcept was a wild stab in the dark by my rheumy when I started having more and more cognitive dysfunction. I was afraid to drive, my confusion could get so bad so quickly -- I simply could not think straight about the smallest of things -- the Cellcept cleared up my brain in about 4 weeks! Not a documented use of Cellcept, but it sure has been a miracle drug for me.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/7/2007 1:29 PM (GMT -7)   
 I was reading everyones posts . Melissa I take Cell Cept because I was diagnosed with Lupus Nepihrits. I am now taking 15 mg of  prednisone. I was on a dosage of 60 mg a day. I was just wondering when  my doctor would lower my Cell Cept from  3000mg . I think I lost more hair with the smaller dosage of Cell Cept. Maybe it was because my body was adjusting to it I'm not sure and I was really sick and had pneumonia. The weird thing is I think my hair texture has changed to but it is growing back thicker and has stopped shedding. I am adjusting to the shorter hair now and now it decides to grow back. Strange Huh!

Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/7/2007 1:34 PM (GMT -7)   
Lynwood,
That is intersting what you said about the Cell cept helping with clearity. I thought it was me Sometimes I would become confused and have difficult expressing my thoughts verbally. I would become frustrated. That has cleared up for me as well I thought it was because of all of the medicines in the hospital. you just may be on to something.
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 12/7/2007 5:58 PM (GMT -7)   
Wow Lynwood, I'm glad that cellcept is helping you with that. I'm taking it for nephritis as well lupus fighter. My doctor told me about the alternatives for cellcept and the side effects are awful, so I'll deal with the hair loss.
21 yrs old - Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, spironolactone, nexium, furosemide, oscal + d


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/7/2007 6:04 PM (GMT -7)   
Melissa you hair will grow back, mine has started to grow back and I am still on a high dosage of Cell Cept still. I also take vitamin E now that helps with hair growth .
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


Cindermom7
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/13/2012 10:06 PM (GMT -7)   
Hi i am new to this support group and I wanted to join for myself but also those I love.... I saw the post by Meliss2k12 about the alternatives to taking Cellcept? The meds are very harsh on my "loved one" and we could really use some help please! Also we could use anything to make this better or any easier for her she also has Systemic Lupus for over 40yrs now too. Thank you and be well and blessed :)

Jujubeee714
Regular Member


Date Joined Jun 2012
Total Posts : 26
   Posted 9/17/2012 4:47 PM (GMT -7)   
Kookla, I actually said this in another thread to Nina but it is appropriate here too! I am also in remission of kidney nephritis. I was dx'd with SLE in March 2010 and was on the same meds you were (400mg plaquenil and prednisone as needed for flares) but I went from one flare to another to another. I also have discoid and subcutaneous lupus and some complications like multiple cranial neuropathies, occipital neuralgia, and peripheral and autonomal neuropathy, pernicious anemia, constant mouth and nose sores, ulceric lesions and discoid rashes, etc. My last rheumie I had for two years did not think my labs (no high sed rate or low comp levels even though my ANA direct panel is highly positive) dictated any stronger meds and I suffered greatly the last two years. I finally got a new rheumie and he put me promptly on CellCept. Thank God. I am finally getting better. I'm glad you are getting a second opinion and respect your choice of being cautious at the stronger meds but I cannot tell you how happy I am that I'm feeling better. Makes a big difference to quality of life. Don't change anything without talking to your rheumatologist FIRST. Love Julie

kpeachy75
Regular Member


Date Joined Sep 2005
Total Posts : 250
   Posted 9/23/2012 8:22 PM (GMT -7)   
I had a horrible reaction when I took it so I'm on prednisone, imuran and plaquenil.
Systemic Lupus, Diagnosed May 2005. Lupus Anticoagulant, Diagnosed August 2005. Reynauds Phenomenon, Diagnosed September 2005

Daily meds: prednisone (5mg), plaquanel, imuran, zoloft, wellbutrin, norvasc, nexium, coumedin 4mg, vicodin, flexeril.
Supplements: Silver Womens One a Day multivitamin, Nutribone (calcium,vitamin d & magnesium suppleme

jenrox
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/5/2013 8:44 PM (GMT -7)   
wow, I'm so late to this board, I hope some of you are still here... I've been taking cellcept for over a month and a half for my lupus pneumonitis because my lungs are only 30% capacity and getting worse. Well, I really want to stop taking the cellcept, because I've increased bleeding and bruising times, and as of now, I've been having diahrrea and vomiting for 7 days. I know it's a type of chemo, but I was told it was mild. I have a baby and a disabled child in a wheelchair, and I cannot function like this having to stay in bed trying not to throw up, and losing so much weight.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/5/2013 9:08 PM (GMT -7)   
Jenrox,

Have you talked to your Drs about the side effects you are having? And about the vomiting/diarrhea? It sounds to me like perhaps this is not the medication for you.

Have you tried Imuran or MTX? These are often used as alternatives to Cellcept.

I took Cellcept for about 18 months with no side effects and it really made Lupus turn tail and run.

Please check in with your Drs, it sounds like time for some changes.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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