CellCept Question 1

"Cellcept" Survey 2002.
Page 2

Question:

Why did you choose Cellcept ?

Name
^Answers

^Aneta ^{I tried imuran for 3 years, Cyclosporin and Prednison, all
with too many side effects and no results.}

^Bob ^{Imuran wasn't working.}

^Bill ^{My neuro suggested it. I had heard of it.}

^Jackson ^{I was desperate - having trouble controlling mg and
functioning.}

^Brenda ^{Doctor thinks it will work.}

^Buddy ^{Doctor's choice.}

^Carmen ^{Cellcept was the only option offered. Other meds
were mentioned, but Cellcept was the med of choice.}

^Cathy ^{Neuro prescribed it, I'd never heard of it.}

^Christine ^{Less side affects.}

^Dean ^{I had already been on imuran, and cellcept, till each
caused bad side effects.}

^Debbie ^{Imuran wasn't working and I couldn't tolerate enough
prednisone to take care of my symptoms.}

^Dossie ^{I first read about it on this list and started pulling up
information on it. I was having a awful time with mestinon, with diarrhea,
cramping all over my body etc. I was going to do anything to get off it.}

^hack ^{I had read about cellcept use on this list and my neuro
had a new patient from Johns Hopkins transferred to him whom was using it
successfully. He decided to try me on it too.}

^Woody ^{I had been on 100 then 150 mg. imuran for a year and was
improved, but still had chewing, swallowing and slurred speech problems; I
was also using 3 to 4 mestinon timespans/day, as needed. I began seeing a
neurologist at Johns Hopkins who suggested trying cellcept to replace the
imuran.}

^Jeff ^{Other immune suppressants were not working and MG was
progressing}

^Jennifer ^{Wanted to get off prednisone but muscle weakness/shortness
of breath was still a problem. Mestinon and the ivigs weren't enough.}

^Joanne ^{Heard about it on MML & suggested to Neuro. Also
having extreme pain and thought it was the Imuran. But it was MiaCalcin
for osteoporosis.}

^John ^{Neuro suggestion.}

^Shirley ^{I chose cellcept because it was a recommendation by my
neurologist and also because I had read about it.}

^Kerri ^{My neuro at the time suggested it to wean me off the
Prednisone. He was very good, and I trusted him completely.}

^Kevin ^{Cellcept began because Imuran didn't work}

^{Linda C.} ^{Cellcept began because Imuran didn't work HAVE NOT STARTED
YET, CONSIDERING IT, IT REALLY IS MY LAST OPTION.}

^{Linda W.} ^{I have had a progressive deteriorating of my MG the past
year.I've been on prednisone for a year, tried Imuran, but reacted to it,
and need something else. Cellcept sounded the most promising.}

^Louise ^{I had heard others were having great success and there was
a study conducted at Jackson Memorial that had good results.}

^Marianne ^{Chosen to attempt to decrease other meds and get better
control over symptoms.}

^{Michael A.} ^{It is the least toxic of the alternatives.}

^{Michael R.} ^{Because I have most of the side effects associated with
long term usage of prednisone.}

^Raymond ^{New neuro put me on it. I have only been on it for
3-1/2 months and it may not have totally kicked in yet.}

^Rebecca ^{Because other chemical treatments had failed to bring
about a remission or even a lessening of severe syptoms and I was on too
much prednisone for too long.}

^Renee ^{Recommended by my neurologist, Dr. Drachman at Johns
Hopkins. My local neuro in Philly was not comfortable prescribing it to me
but wanted me to see Dr. Drachman due to my lack of response (from an
ocular perspective) to prednisone.}

^Robert ^{I was having problems with cyclosporine.}

^Blutomato ^{Was on very high doses of Prednisone and on Immuran X 1
year with little effect on MG and causing severe nausea 24/7.}

^Jim ^{Neuro recommended it.}

^Jan ^{Neuro approached me.}

^Connie ^{Suggested by neuro after 8 months on Imuran with no
improvement in symptoms.}

^{Diane G.} ^{My Neurologist offered me the next step, either Cellcept
or Imuran because the Prednisone was making my blood sugar rise and was no
longer holding my D.V. at bay. I am taking 35 mg. of Prednisone every
other day. He wants to wean me off the Prednisone as soon as the Cellcept
is working at 2000 mg. daily. I have good insurance so I chose Cellcept
over Imuran. I felt that it probably had less side effects from my
reading.}

^{Diane M.} ^{Imuran was not working and could not take Prednisone,
unless in Crisis. It has a bad effect, that even my Neuro wants to avoid.}

……….Answers to Question No. 2

Page designed by Terry Riley
http://myasthenia.puhs.org/
January 13, 2003

Question:	Why did you choose Cellcept ?
Name	^Answers
^Aneta	^{I tried imuran for 3 years, Cyclosporin and Prednison, all with too many side effects and no results.}
^Bob	^{Imuran wasn't working.}
^Bill	^{My neuro suggested it. I had heard of it.}
^Jackson	^{I was desperate - having trouble controlling mg and functioning.}
^Brenda	^{Doctor thinks it will work.}
^Buddy	^{Doctor's choice.}
^Carmen	^{Cellcept was the only option offered. Other meds were mentioned, but Cellcept was the med of choice.}
^Cathy	^{Neuro prescribed it, I'd never heard of it.}
^Christine	^{Less side affects.}
^Dean	^{I had already been on imuran, and cellcept, till each caused bad side effects.}
^Debbie	^{Imuran wasn't working and I couldn't tolerate enough prednisone to take care of my symptoms.}
^Dossie	^{I first read about it on this list and started pulling up information on it. I was having a awful time with mestinon, with diarrhea, cramping all over my body etc. I was going to do anything to get off it.}
^hack	^{I had read about cellcept use on this list and my neuro had a new patient from Johns Hopkins transferred to him whom was using it successfully. He decided to try me on it too.}
^Woody	^{I had been on 100 then 150 mg. imuran for a year and was improved, but still had chewing, swallowing and slurred speech problems; I was also using 3 to 4 mestinon timespans/day, as needed. I began seeing a neurologist at Johns Hopkins who suggested trying cellcept to replace the imuran.}
^Jeff	^{Other immune suppressants were not working and MG was progressing}
^Jennifer	^{Wanted to get off prednisone but muscle weakness/shortness of breath was still a problem. Mestinon and the ivigs weren't enough.}
^Joanne	^{Heard about it on MML & suggested to Neuro. Also having extreme pain and thought it was the Imuran. But it was MiaCalcin for osteoporosis.}
^John	^{Neuro suggestion.}
^Shirley	^{I chose cellcept because it was a recommendation by my neurologist and also because I had read about it.}
^Kerri	^{My neuro at the time suggested it to wean me off the Prednisone. He was very good, and I trusted him completely.}
^Kevin	^{Cellcept began because Imuran didn't work}
^{Linda C.}	^{Cellcept began because Imuran didn't work HAVE NOT STARTED YET, CONSIDERING IT, IT REALLY IS MY LAST OPTION.}
^{Linda W.}	^{I have had a progressive deteriorating of my MG the past year.I've been on prednisone for a year, tried Imuran, but reacted to it, and need something else. Cellcept sounded the most promising.}
^Louise	^{I had heard others were having great success and there was a study conducted at Jackson Memorial that had good results.}
^Marianne	^{Chosen to attempt to decrease other meds and get better control over symptoms.}
^{Michael A.}	^{It is the least toxic of the alternatives.}
^{Michael R.}	^{Because I have most of the side effects associated with long term usage of prednisone.}
^Raymond	^{New neuro put me on it. I have only been on it for 3-1/2 months and it may not have totally kicked in yet.}
^Rebecca	^{Because other chemical treatments had failed to bring about a remission or even a lessening of severe syptoms and I was on too much prednisone for too long.}
^Renee	^{Recommended by my neurologist, Dr. Drachman at Johns Hopkins. My local neuro in Philly was not comfortable prescribing it to me but wanted me to see Dr. Drachman due to my lack of response (from an ocular perspective) to prednisone.}
^Robert	^{I was having problems with cyclosporine.}
^Blutomato	^{Was on very high doses of Prednisone and on Immuran X 1 year with little effect on MG and causing severe nausea 24/7.}
^Jim	^{Neuro recommended it.}
^Jan	^{Neuro approached me.}
^Connie	^{Suggested by neuro after 8 months on Imuran with no improvement in symptoms.}
^{Diane G.}	^{My Neurologist offered me the next step, either Cellcept or Imuran because the Prednisone was making my blood sugar rise and was no longer holding my D.V. at bay. I am taking 35 mg. of Prednisone every other day. He wants to wean me off the Prednisone as soon as the Cellcept is working at 2000 mg. daily. I have good insurance so I chose Cellcept over Imuran. I felt that it probably had less side effects from my reading.}
^{Diane M.}	^{Imuran was not working and could not take Prednisone, unless in Crisis. It has a bad effect, that even my Neuro wants to avoid.}