cellcept and blurry vision

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petpuppy
New Member


Date Joined Jan 2008
Total Posts : 7
   Posted 9/8/2008 7:52 AM (GMT -7)   
Hello, I take cellcpt for multiple sclerosis. i started in jan. i have two concerns: my vision is blurred and my short term memory seems even worse.
anyone relate?

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/8/2008 8:29 AM (GMT -7)   
Petpuppy,

My short term memory improved remarkably almost immediately when I went on cellcept. I've had no change in vision since I've been taking it. Sorry you're noticing adverse side effects. Have you mentioned either of these side effects to your pharmacist? How about your doctor? I don't think I'd ignore either of these new problems. Good luck.
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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/8/2008 8:30 AM (GMT -7)   
I recenttly started taking Cellcept again. I have noticed some blurry vision, but my mental status is soooo much better! I am "clearer" (less foggy) than i've been in a long time! Judy

petpuppy
New Member


Date Joined Jan 2008
Total Posts : 7
   Posted 9/8/2008 8:53 AM (GMT -7)   
I have not mentioned this to my neurologist b/c at my last appointment he told me he was considering stopping my taking cellcept because he read it hurt one patients immune system. Well, to be honest if I have to stop taking it I'm in a world of trouble b/c my MS flares were coming every 3 weeks so I don't to alert him just yet. I thought I'd go see an eye specialist first. I'm confused. very confused and frustrated

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 9/8/2008 9:19 AM (GMT -7)   
I took Cellcept for about 16 months -- if helped clear up some cognitive issues I was having and I did not have any eye problems.

It's a hard call -- but I think I'd say something to the doctor, because I'd hate it if something else was causing some permanent eye damage that could be avoided.

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


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/8/2008 9:40 AM (GMT -7)   
Sometimes it seems that all our medical decisions are between a rock and a hard place.   I looked up the cellcept and found that it is an immunosuppressment drug I think.  I would love to have a clear mind again, to remember things normally like I used to.
 
My prayers are with you Petpuppy.  I hope the medicine works out for you.  But like Lynnwood I would have to say that it might be a good idea to call your doctor on this one.  i overreact to things sometimes, and imagine in your shoes that I would be terrified.
 
Please keep us posted. I would be interested to know how the meds work out  for you.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 9/8/2008 7:28 PM (GMT -7)   
Cellcept is most definitely an immunosuppressant it is used as an antirejection drug for transplant patients. Suppressing the immune system is actually the point. I'm struggling with anemia, made worse by the cellcept; but it's so helpful with the cognitive issues that it's worth the trade off for me. It's true that drugs and their side effects often leave you wondering if it's worth it or not! Does the end justify the means? I definitely wouldn't risk losing my vision! That's why i'm currently off of Plaquenil! Good luck, Judy

Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/9/2008 2:26 AM (GMT -7)   

When I went to the grid created by Lynnwood, i had a problem with my right eye.  I saw ghosts of lines beside the real lines, and part of the grid seemed to be missing in places.  So I do not know.  going to call the rheumy and tell him my findings, and the pain in my eyes due to bright sunlight, and let him decide to a degree.  Ultimately the decision is mine to make, not his.  but I am thinking he will probably take me off plaquenil.  Will face that road when and if I come to it.

For the moment it is really a good day in NC, and I would like to hold onto it.  but if it means losing what little eyesight I have left in my right eye, I won't do it.  Before starting plaquenil this time, the sickness was so overwhelming that I asked for lupus to be started again.  Now I may have to request that it be taken away.

one bump in the road however, one day at a time.  who knows? Not me.  who knows if this  really isn't a lesson teacher in some other bigger spiritual path in life's journey.  I will call the doctor, and stop worrying about it until the doctor calls me back.  and enjoy this really good day relatively speaking.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 9/9/2008 4:41 AM (GMT -7)   
Hi Petpup. I've been taking Cellcept for 8 months. I started CellCept because my speech was a mess- stuttering, slurring, and unable to find words. So far CellCept has made a marked improvement in my cognitive function. I still have short term memory loss, but for me that's always been part of lupus. Persons with autoimmune diseases really seem to have problems with drugs reacting differently. I think you should call your doc because Cellcept might not be right for you. (hugs) Love, Butterflake

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


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/9/2008 7:47 AM (GMT -7)   
I started CellCept because my speech was a mess- stuttering, slurring, and unable to find words. So far CellCept has made a marked improvement in my cognitive function.
 
With what you have shared with us above, lets me know that I have nothing to complain about.  People just do not know.  Sometimes I think they do not want to know about Lupus.  Hard to be empathetic if one has no idea of what all Lupus can do.
 
I am glad that cellcept is working for you.  It must have been extremely difficult to keep one foot in front of the other after Lupus made you do the things above.  did they think it was a stroke, or did they know all along that it was lupus?  Really hard to do such a thing I imagine.  I feel humbled by your experience Donna.  I would be at my wits end if it happened to me.  How did you find the strength to keep moving in a forward path?  One foot in front of the other?
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/9/2008 8:06 AM (GMT -7)   
Petpuppy,

If you do take cellcept, I'm sure that your doctor is doing bloodwork on a very regular basis. I started taking 2,000 mg a day and felt so much better, almost immediately. However, after just a few months my kidneys started acting up so she dropped me to a very low dose, 250 mg twice a day. It still helps a little, but I wish I could have tolerated a higher dose.
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


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/7/2009 11:37 AM (GMT -7)   
If you take cellecpt, you should also be drinking a lot of water so that yopur kidneys can keep up with the drug. I took it for about 9 months but the Neurologist took me off of it because he didn't notice any difference. I then had to go to Chicago to Rush Prezbeterian to get a treatement of Cytoxin, which did wonders for me. Since then, I have had 5 treatments of Tysabri and am now waiting once again to go back on Cytoxin Treatments. My point here is, drink plenty of water so that you don't do any damage to your kidneys. It's very important!


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

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