CellCept Survey Patient's Comments

"Cellcept" Survey 2002.
Page 12

Question:

Comments about using Cellcept !!

Name
^Answers

^Aneta ^{I am using this close to 4 years now. This is after many
ohter immunosepresants (imuran, prednisone, cyclosporine, plasma pheresis
etc). Cellcept has been my life changer. Not life saver, but life changer.
I am now capable to live a full life. At times I still go thru a great
deal of MG symptoms, but I am now walking on my own, I am holding a full
time Custodial job in the evening hours and just went thru the worst year
of my life, the stress alone was thick enough to do any one in. I am
weaning my IVIG needs off to every 5 weeks a one dose treatment. It took
about 8 months for the real affects to kick in, but my doses was not high
enough either. My side affects took some getting used to, which were
mostly abdominal. Thats been treated with prilosec and some over the
counter pepcid.
I am now for 3 years on 3000mg Cellcept.}

^Bob ^{Have not had any problems with Cellcept that isn't
advertised. Is It working? I don't know for sure, but I feel better now
than I have since I was diagnosed. Is the Thymectomy taking effect? I
don't know. Maybe.}

^Bill ^{I don’t know if I would have been worse. I take more
mestinon now and also prednisone. My liver enzymes increased - don’t
know what it was from - returned to normal.}

^Jackson ^{I must say i don't feel it has made a significant
difference in the way i feel.}

^Buddy ^{Its expensive, and large pills to be swallowed. Diarrea
first week or two.}

^Carmen ^{I am beginning to feel that the Cellcept is working. I
have only been on Cellcept since August. As I understand, it takes several
months for the effect to take place.}

^Cathy ^{I was able to cut down on the Pred. thanks to
Cellcept, but can't seem to be able to get off completely as I start
having bad breathing problems and increased Mg flare ups. I would like to
know if this is as good as I'll get or if it will kick in more later ?}

^Christine ^{So far no side affects, but not much improvement yet, I
have been on Cellcept for over a year now, and haven't had to run to the
hospital in crisis, so thats one good thing.}

^Dean ^{I have had much better blood tests with cellcept.}

^Debbie ^{I don't have stomach upset like I did on Imuran, but I
still have trouble with constipation (could be the prednisone).}

^Woody ^{It is prohibitively expensive, without good insurance
coverage (which fortunately, thanks to my wife, we have.) It hasn't
completely knocked out my MG, though in conjunction with cyclosporine, and
with the last IVIgs in August 2002, it seems to have all my symptoms in
remission, at least for now.
I was able to stop taking mestinon completely in mid June
2002 and seem to begradually gaining more and more strength and stamina.}

^Jeff ^{Cellcept was the only immune suppressant I have taken
that didn't cause discomfort nor had been the culprit for the need of
other prescription meds. I wish it had been more successful in controlling
my symptoms. I am sad to say it did not. I gave it a full year with no
relief of symptoms. I am Seronegative, who knows. . . this may be the
reason it didn't work for me??}

^Joanne ^{If I don't follow the evening pre-dinner 1hr. rule - I get
stomach upset - wake up middle of the night with pain in stomach - take
tums or Maloxx - sleep sitting up etc... feels like a baseball is trying
to digest in my stomach…}

^John ^{For this snowflake, it was a wonder drug. Within a month I
was off Mestinon; in 3 months I tapered off the Cellcept itself until
stopping altogether. Has been over a year with very few symptoms
returning. This from being unable to function to now close to normal
(whatever that is).}

^Shirley ^{My neurologist said he was going to cure me of MG this
week. My Achr test was doen to 1.4-- since I was diag. with MG I
have never been that low. We attribute it to the cellcept. Even
plasmapheresis and/or IVIG brought the count down that low. I have been
feeling fantastic--still a little tired, but my voice is GREAT!}

^Kerri ^{Since taking CellCept, I've gotten to about as
"normal" as I'm going to get. Being able to wean off the
Prednisone enabled me to lose 40 of the 50 pounds I gained while being on
Prednisone. It took about 4 months to "kick in"...once it did, I
kept getting stronger and stronger every day. Last July I was able to go
on vacation and go hiking. Before CellCept, I had trouble walking 100
yards.}

^Kevin ^{Cellcept seemed to kick in more quickly for me and i
noticed that some symptoms improved after a few weeks on the drug.}

^Louise ^{If I could have tolerated it I think it would have been
the only medication I would have needed. In the begining I vomited every
day after the first dose.This went away after a while. I "seemed"to
be more susceptible to sinus infections this year.}

^{Michael R.} ^{.....it's like I'm not taking the drug, I don't notice ANY
difference whatsoever. But if it will hold my symptoms at the level I've
achieved with Prednisone, but still let me taper off Prednisone, I'll be
happy because that might mean I can get off Xanax, Lumigan, Klor-Con,
Fosamax and reduce my dosage of Glucophage and Glucotrol XL, plus get on a
diet that will allow me to lose the 40 lbs. I've gained over the last
three years.}

^Jerry ^{I have been feeling really good for past 6 weeks but don't
know if due to Cellcept or Prednisone. If you are going to take Cellcept a
good prescription plan is essential. My first prescription for a 3 month
supply was $1545.00.}

^Rebecca ^{Cellcept has been a good alternative for me and I hope to
see continued improvement of my MG. I was able to stop plasmapheresis
treatments and cut back significantly on the prednisone. I would
reccommend cellcept to others with MG.}

^Renee ^{So far just fine. It is annoying to have to wath
taking it around milk products but so long as I am taking cyclosporine the
Cellcept will be on an empty stomach.}

^Robert ^{I still have to take mestinon but it has helped me more
than Cyclosporine did.}

^Blutomato ^{Insurance won't cover it but it a great drug, about $7000
/ year.}

^Jim ^{My condition has improved with no known side effects}

^Ben ^{My neuro tried to put me on cellcept but my insurancs
would not pay for it because it wasn't FDA approved for MG. That really
stinks.}

^Dusty ^{I tryed imuran twice. HIGHLY allergic to the stuff.
bummer. so the next step was CYCLO. the neuro would not even spak speak of
cellcept. her opinion was its much more risky then cyclo. cyclo is proven
for mg the cellcept as of yet is not. however it sure seems to be ALOT
more popular then the cyclo. ( my opinion).
my old neuor hs had never worked with the cyclo either tho.
:( but she does do her homework ).}

^Ron ^{I have been very interested in Cellcept but have not been
stable enough according to my second neuro to switch to it. My first neuro
hadn't heard of it for mg. The first neuro had me on Imuran. My second
neuro tookover and immediately put me in the hospital (October 2001) and
started me on prednisone since I was going downhill fast. He doesn't want
to change medicines until things are stable. He says that Imuran and
Cellcept are quite similar although what I read Cellcept has fewer side
effects.}

^Connie ^{Be patient and give it a chance before giving up on it.}

^Debbie ^{I can't say I've had problems with Cellcept, but it hasn't
cured my double vision after 4-1/2 months of 2000 mg a day. I had a
exacerbation about a
year ago that involved swallowing and breathing, as well
as double vision,
so I'm lucky that I'm down to just double vision. It was
plasmapheresis and prednisone that took care of the swallowing/breathing
problems, but double vision remains stubborn. I tried Imuran, which
previously has been successful for me, before going on the Cellcept.
I am tapering off prednisone now, and I hope I can get
better on Cellcept
only. This tapering business is hard, though - aches and
pains, sleepiness, tiredness (as opposed to weakness). That drug gets you
coming and going.}

^Diane ^{I will be glad when I reach the 2000 mg level because then
my neuro will change me to 500 mg size pills which will be easier to
take than the 250 mg pills. So far I am very happy with the Cellcept
except for the fact that I have to wait 2-3 hours after taking a dose
before I can eat anything and 1 hour before a meal before eating. This
takes planning and getting up in the middle of the morning to take my
first dose. All my other medications have to be taken on a full stomach.}

^Celina ^{I have taken cellcept since June 2001. I take 2000 mg
daily. Although, I like the little that I have experienced...one of the
most interesting things happened after about five weeks of usage. I broke
out into a rash all over my body. My suppressed immune system had
developed acute dandruff, exacerbated in its form, I looked as if I had
measles and I itched a bit. After a little steroid treatment to the skin I
was good to go after about two weeks. For about the same time period, I
experience an acute inability to sleep.}

^Carol ^{Ive been on Cellcept for 3 1/2 years. Started out
while in the hospital on 1000mgs, then went to 1250mgs where I stayed for
2 years since I had
improvement at that dose. As I was tapering off prednisone
I got stuck at
10mgs a day so the cellcept was increased to 1500mgs and I
was able to
finally get off prednisone completely. I stayed at 1500mgs
til this June when I needed to start PT 2x a week, so we increased the
cellept to 2000mgs. There really is no difference at the 2000mgs so I will
go back down to 1500mgs next month. The cellcept has stabilized me more,
havent been in the hospital since I
started it, but I still am on IVIG every other week. We
tried reducing the IVIG a couple of times but I needed to go back to my
regular schedule.}

^Bob ^{I had headaches a bit too when I first started. I was
taking some 1000 mg Motrin to counteract and it helped. Vicodan upon
occasion if it was really bad. Now my headaches are from my EX, Work,
stress you know the usual
stuff. I take 2000 MG Cell Cept daily, 10 MG Pred and
Mestinon as need.}

^Carlos ^{I started right out in June with 2 grams/day of Cell Cept,
before taking any Prednisone. The idea was to see whether I could avoid
entirely the Prednisone and its side effects. Even after IVIG and plasma
exchange, I
continuued to get weaker with the general MG, so opted to
go ahead with a
low dose rate of prednisone and slowly increase - hoping
that by the time
the prednisone starts working some magic, the Cell Cept
will be ready to
kick in and take over.}

^Renee ^{I've been on Cellcept since the middle of August. I
saw Dr. Drachman at Johns Hopkins and he started me on Cellcept along w/
cyclosporine to get a fast effect. My syptoms at the time I started
Cellcept/cyclosporine were persistent ptosis and double vision that was
not responding to 2 1/2 months of 60 mg/day prednisone and IVIG every two
weeks. I had generalized symptoms that cleared up with the IVIG and I
believe, the prednisone kicking in. I have never taken mestinon. Since
starting Cellcept and cyclosporine I have improved dramatically. I rarely,
if ever, have ptosis now. I noticed an improvement in my symptoms within a
couple of weeks of starting the new drugs. So far there have been no ill
side effects. I do get nauseous every once in a while but I blame that on
the cyclo not Cellcept. I also have hypertension but that is a stated side
effect of the cyclosporine.}

^{Diane M.} ^{Cellcept is a great drug. However, I don't think I
have received its full effect, in only 3 mos. I have noticed that it helps
with my diaphram/breathing muscles. But I also have had an increase in my
Bulbar symp. and overall MG symp. That was on better control with Imuran.
I have also had to increase my the amount of Mestinon, since starting
Cellcept. Imuran decreased or made me more sensative to Mestinon. But
Imuran was not effective on my breathing weakness. I still may not be
receiving the full effect of Cellcept yet. I have had a more lasting cold,
and a few minor infections. Insomnia and an increased gag reflex since the
start of Cellcept. My blood work came back with a marginal increase in
Alkaline Phosphate, indicates liver injury. I have only been on it for
just over 3 mos. which is cause for concern, for the long term on Cellcept.}

……….Summary of the Survey…… January 2003

Page designed by Terry Riley
http://myasthenia.puhs.org/
Friday, January 31, 2003

Question:	Comments about using Cellcept !!
Name	^Answers
^Aneta	^{I am using this close to 4 years now. This is after many ohter immunosepresants (imuran, prednisone, cyclosporine, plasma pheresis etc). Cellcept has been my life changer. Not life saver, but life changer. I am now capable to live a full life. At times I still go thru a great deal of MG symptoms, but I am now walking on my own, I am holding a full time Custodial job in the evening hours and just went thru the worst year of my life, the stress alone was thick enough to do any one in. I am weaning my IVIG needs off to every 5 weeks a one dose treatment. It took about 8 months for the real affects to kick in, but my doses was not high enough either. My side affects took some getting used to, which were mostly abdominal. Thats been treated with prilosec and some over the counter pepcid. I am now for 3 years on 3000mg Cellcept.}
^Bob	^{Have not had any problems with Cellcept that isn't advertised. Is It working? I don't know for sure, but I feel better now than I have since I was diagnosed. Is the Thymectomy taking effect? I don't know. Maybe.}
^Bill	^{I don’t know if I would have been worse. I take more mestinon now and also prednisone. My liver enzymes increased - don’t know what it was from - returned to normal.}
^Jackson	^{I must say i don't feel it has made a significant difference in the way i feel.}
^Buddy	^{Its expensive, and large pills to be swallowed. Diarrea first week or two.}
^Carmen	^{I am beginning to feel that the Cellcept is working. I have only been on Cellcept since August. As I understand, it takes several months for the effect to take place.}
^Cathy	^{I was able to cut down on the Pred. thanks to Cellcept, but can't seem to be able to get off completely as I start having bad breathing problems and increased Mg flare ups. I would like to know if this is as good as I'll get or if it will kick in more later ?}
^Christine	^{So far no side affects, but not much improvement yet, I have been on Cellcept for over a year now, and haven't had to run to the hospital in crisis, so thats one good thing.}
^Dean	^{I have had much better blood tests with cellcept.}
^Debbie	^{I don't have stomach upset like I did on Imuran, but I still have trouble with constipation (could be the prednisone).}
^Woody	^{It is prohibitively expensive, without good insurance coverage (which fortunately, thanks to my wife, we have.) It hasn't completely knocked out my MG, though in conjunction with cyclosporine, and with the last IVIgs in August 2002, it seems to have all my symptoms in remission, at least for now. I was able to stop taking mestinon completely in mid June 2002 and seem to begradually gaining more and more strength and stamina.}
^Jeff	^{Cellcept was the only immune suppressant I have taken that didn't cause discomfort nor had been the culprit for the need of other prescription meds. I wish it had been more successful in controlling my symptoms. I am sad to say it did not. I gave it a full year with no relief of symptoms. I am Seronegative, who knows. . . this may be the reason it didn't work for me??}
^Joanne	^{If I don't follow the evening pre-dinner 1hr. rule - I get stomach upset - wake up middle of the night with pain in stomach - take tums or Maloxx - sleep sitting up etc... feels like a baseball is trying to digest in my stomach…}
^John	^{For this snowflake, it was a wonder drug. Within a month I was off Mestinon; in 3 months I tapered off the Cellcept itself until stopping altogether. Has been over a year with very few symptoms returning. This from being unable to function to now close to normal (whatever that is).}
^Shirley	^{My neurologist said he was going to cure me of MG this week. My Achr test was doen to 1.4-- since I was diag. with MG I have never been that low. We attribute it to the cellcept. Even plasmapheresis and/or IVIG brought the count down that low. I have been feeling fantastic--still a little tired, but my voice is GREAT!}
^Kerri	^{Since taking CellCept, I've gotten to about as "normal" as I'm going to get. Being able to wean off the Prednisone enabled me to lose 40 of the 50 pounds I gained while being on Prednisone. It took about 4 months to "kick in"...once it did, I kept getting stronger and stronger every day. Last July I was able to go on vacation and go hiking. Before CellCept, I had trouble walking 100 yards.}
^Kevin	^{Cellcept seemed to kick in more quickly for me and i noticed that some symptoms improved after a few weeks on the drug.}
^Louise	^{If I could have tolerated it I think it would have been the only medication I would have needed. In the begining I vomited every day after the first dose.This went away after a while. I "seemed"to be more susceptible to sinus infections this year.}
^{Michael R.}	^{.....it's like I'm not taking the drug, I don't notice ANY difference whatsoever. But if it will hold my symptoms at the level I've achieved with Prednisone, but still let me taper off Prednisone, I'll be happy because that might mean I can get off Xanax, Lumigan, Klor-Con, Fosamax and reduce my dosage of Glucophage and Glucotrol XL, plus get on a diet that will allow me to lose the 40 lbs. I've gained over the last three years.}
^Jerry	^{I have been feeling really good for past 6 weeks but don't know if due to Cellcept or Prednisone. If you are going to take Cellcept a good prescription plan is essential. My first prescription for a 3 month supply was $1545.00.}
^Rebecca	^{Cellcept has been a good alternative for me and I hope to see continued improvement of my MG. I was able to stop plasmapheresis treatments and cut back significantly on the prednisone. I would reccommend cellcept to others with MG.}
^Renee	^{So far just fine. It is annoying to have to wath taking it around milk products but so long as I am taking cyclosporine the Cellcept will be on an empty stomach.}
^Robert	^{I still have to take mestinon but it has helped me more than Cyclosporine did.}
^Blutomato	^{Insurance won't cover it but it a great drug, about $7000 / year.}
^Jim	^{My condition has improved with no known side effects}
^Ben	^{My neuro tried to put me on cellcept but my insurancs would not pay for it because it wasn't FDA approved for MG. That really stinks.}
^Dusty	^{I tryed imuran twice. HIGHLY allergic to the stuff. bummer. so the next step was CYCLO. the neuro would not even spak speak of cellcept. her opinion was its much more risky then cyclo. cyclo is proven for mg the cellcept as of yet is not. however it sure seems to be ALOT more popular then the cyclo. ( my opinion). my old neuor hs had never worked with the cyclo either tho. :( but she does do her homework ).}
^Ron	^{I have been very interested in Cellcept but have not been stable enough according to my second neuro to switch to it. My first neuro hadn't heard of it for mg. The first neuro had me on Imuran. My second neuro tookover and immediately put me in the hospital (October 2001) and started me on prednisone since I was going downhill fast. He doesn't want to change medicines until things are stable. He says that Imuran and Cellcept are quite similar although what I read Cellcept has fewer side effects.}
^Connie	^{Be patient and give it a chance before giving up on it.}
^Debbie	^{I can't say I've had problems with Cellcept, but it hasn't cured my double vision after 4-1/2 months of 2000 mg a day. I had a exacerbation about a year ago that involved swallowing and breathing, as well as double vision, so I'm lucky that I'm down to just double vision. It was plasmapheresis and prednisone that took care of the swallowing/breathing problems, but double vision remains stubborn. I tried Imuran, which previously has been successful for me, before going on the Cellcept. I am tapering off prednisone now, and I hope I can get better on Cellcept only. This tapering business is hard, though - aches and pains, sleepiness, tiredness (as opposed to weakness). That drug gets you coming and going.}
^Diane	^{I will be glad when I reach the 2000 mg level because then my neuro will change me to 500 mg size pills which will be easier to take than the 250 mg pills. So far I am very happy with the Cellcept except for the fact that I have to wait 2-3 hours after taking a dose before I can eat anything and 1 hour before a meal before eating. This takes planning and getting up in the middle of the morning to take my first dose. All my other medications have to be taken on a full stomach.}
^Celina	^{I have taken cellcept since June 2001. I take 2000 mg daily. Although, I like the little that I have experienced...one of the most interesting things happened after about five weeks of usage. I broke out into a rash all over my body. My suppressed immune system had developed acute dandruff, exacerbated in its form, I looked as if I had measles and I itched a bit. After a little steroid treatment to the skin I was good to go after about two weeks. For about the same time period, I experience an acute inability to sleep.}
^Carol	^{Ive been on Cellcept for 3 1/2 years. Started out while in the hospital on 1000mgs, then went to 1250mgs where I stayed for 2 years since I had improvement at that dose. As I was tapering off prednisone I got stuck at 10mgs a day so the cellcept was increased to 1500mgs and I was able to finally get off prednisone completely. I stayed at 1500mgs til this June when I needed to start PT 2x a week, so we increased the cellept to 2000mgs. There really is no difference at the 2000mgs so I will go back down to 1500mgs next month. The cellcept has stabilized me more, havent been in the hospital since I started it, but I still am on IVIG every other week. We tried reducing the IVIG a couple of times but I needed to go back to my regular schedule.}
^Bob	^{I had headaches a bit too when I first started. I was taking some 1000 mg Motrin to counteract and it helped. Vicodan upon occasion if it was really bad. Now my headaches are from my EX, Work, stress you know the usual stuff. I take 2000 MG Cell Cept daily, 10 MG Pred and Mestinon as need.}
^Carlos	^{I started right out in June with 2 grams/day of Cell Cept, before taking any Prednisone. The idea was to see whether I could avoid entirely the Prednisone and its side effects. Even after IVIG and plasma exchange, I continuued to get weaker with the general MG, so opted to go ahead with a low dose rate of prednisone and slowly increase - hoping that by the time the prednisone starts working some magic, the Cell Cept will be ready to kick in and take over.}
^Renee	^{I've been on Cellcept since the middle of August. I saw Dr. Drachman at Johns Hopkins and he started me on Cellcept along w/ cyclosporine to get a fast effect. My syptoms at the time I started Cellcept/cyclosporine were persistent ptosis and double vision that was not responding to 2 1/2 months of 60 mg/day prednisone and IVIG every two weeks. I had generalized symptoms that cleared up with the IVIG and I believe, the prednisone kicking in. I have never taken mestinon. Since starting Cellcept and cyclosporine I have improved dramatically. I rarely, if ever, have ptosis now. I noticed an improvement in my symptoms within a couple of weeks of starting the new drugs. So far there have been no ill side effects. I do get nauseous every once in a while but I blame that on the cyclo not Cellcept. I also have hypertension but that is a stated side effect of the cyclosporine.}
^{Diane M.}	^{Cellcept is a great drug. However, I don't think I have received its full effect, in only 3 mos. I have noticed that it helps with my diaphram/breathing muscles. But I also have had an increase in my Bulbar symp. and overall MG symp. That was on better control with Imuran. I have also had to increase my the amount of Mestinon, since starting Cellcept. Imuran decreased or made me more sensative to Mestinon. But Imuran was not effective on my breathing weakness. I still may not be receiving the full effect of Cellcept yet. I have had a more lasting cold, and a few minor infections. Insomnia and an increased gag reflex since the start of Cellcept. My blood work came back with a marginal increase in Alkaline Phosphate, indicates liver injury. I have only been on it for just over 3 mos. which is cause for concern, for the long term on Cellcept.}