No pred...Cellcept

March 21, 2007

Yesterday was one for the books. A small victory, but a victory none

the less. Perhaps I was still raging from the pred...gosh, I hate

that stuff. The doc began the conversation with the phrase " Have we

tested you for MS? " and I snapped. Been there, done that, have the T-

shirt, the jacket, the bopple headed dog & all of the souvenirs!

Enough already! I walked through 15 years of symptoms, tests, and

frustration. In the end, he conceded that in retrospect, the

symptoms & test results are consistent with chronic sarcoid with

skin, pulmonary, CNS & peripheral nerve involvement. He even wrote

it on my chart! Halleluiah, the diagnostic phase is finally behind

us...time to move on.

He attributed the temporary loss of vision over the weekend to an

ocular migraine. While not overly concerned, he told me to contact

the office if the symptoms presented again. I wasn't familiar with

the term or the event so I took his word, especially since we had

bigger fish to fry. On to potential treatments. We talked about

prednisone, the side effects, the auxiliary pharmacy to counteract

the side effects (insomnia, anxiety, etc). I could tell that the doc

wasn't a big fan. Then he told me about Cellcept (Roche labs), an

immuno-suppressant, including benefits & risks, indicating that he

has prescribed the drug for hundreds of his MS & sarc patients with a

good success rate. OK, this is an off label use so here's the

disclaimer..., the doctor met the criteria of 21 CFR

(http://www.fda.gov/oc/ohrt/irbs/offlabel.html) by being " well

informed …and using firm scientific rationale and sound medical

evidence " . I signed an informed consent form in return for the rx &

went off to surf the net to find out what else I could.

My biggest concerns are the side effects…possible infections due to

the suppressed immune response, increased risk of skin cancer (4.2%)

& lymphoma (<2%) , pain (76%) & headaches (24%) ...pain reported by

76% of the test group without much of a description as to what type /

level...the pain & headache are a real concern for me considering my

present state, not to mention the thought of purposely increasing my

risk of cancer…sad to realize what risks one is willing to accept

once you've surpassed your threshold of pain twice over. Regardless

of the not so good symptoms, the pred reduced the headache, reminding

me of what life used to be like. I want that life back. I filled

the rx yesterday afternoon. If nothing else, I'll give it a go for a

month. I always have the option to stop if the treatment is worse

than the disease or otherwise ineffective... peace to you, my

friends. Tony

March 21, 2007

Tony, I started Cellcept a few months ago but had to go off until after my AICD/pacemaker surgery (Jan 25 for cardiac sarcoid). I'm several weeks post-op now but with a rash under my left arm so can't re-start the Cellcept until it's gone. I had NO problems with the med and I will be glad to get back on it. Right now, my left arm is swollen (checked for clots but none there) so will see the EP doctor (he did the surgery) tomorrow about my arm. Cellcept was prescribed by my s Hopkins Sarcoidosis specialist in Baltimore. God bless you, BeckyTony wrote: Yesterday was one for the books. A small victory, but a victory none the less. Perhaps I was still raging from the pred...gosh, I hate that stuff. The doc began the conversation with the phrase "Have we tested you for MS?" and I snapped. Been there, done that, have the T- shirt, the jacket, the bopple headed dog & all of the souvenirs! Enough already! I walked through 15 years of symptoms, tests, and frustration. In the end, he conceded that in retrospect, the symptoms & test results are consistent with chronic sarcoid with skin, pulmonary, CNS & peripheral nerve involvement. He even wrote it on my chart! Halleluiah, the diagnostic phase is finally behind us...time to move on. He attributed the temporary loss of vision over the weekend to an ocular migraine. While not overly concerned, he told me to contact

the office if the symptoms presented again. I wasn't familiar with the term or the event so I took his word, especially since we had bigger fish to fry. On to potential treatments. We talked about prednisone, the side effects, the auxiliary pharmacy to counteract the side effects (insomnia, anxiety, etc). I could tell that the doc wasn't a big fan. Then he told me about Cellcept (Roche labs), an immuno-suppressant, including benefits & risks, indicating that he has prescribed the drug for hundreds of his MS & sarc patients with a good success rate. OK, this is an off label use so here's the disclaimer..., the doctor met the criteria of 21 CFR (http://www.fda.gov/oc/ohrt/irbs/offlabel.html) by being "well informed …and using firm scientific rationale and sound medical evidence". I signed an informed consent form in return

for the rx & went off to surf the net to find out what else I could. My biggest concerns are the side effects…possible infections due to the suppressed immune response, increased risk of skin cancer (4.2%) & lymphoma (<2%) , pain (76%) & headaches (24%) ...pain reported by 76% of the test group without much of a description as to what type / level...the pain & headache are a real concern for me considering my present state, not to mention the thought of purposely increasing my risk of cancer…sad to realize what risks one is willing to accept once you've surpassed your threshold of pain twice over. Regardless of the not so good symptoms, the pred reduced the headache, reminding me of what life used to be like. I want that life back. I filled the rx yesterday afternoon. If nothing else, I'll give it a go for a month. I always have the option to stop if the treatment is worse

than the disease or otherwise ineffective... peace to you, my friends. Tony

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

March 21, 2007

Becky, I've been so worried about you! I've asked several times if anyone has heard from you and thank god you posted.. I lost your phone number and didn't know how to get in touch.. I hope everything went well and that your slowly getting back on your feet... Email me at topdat@... if you want or if you want to talk through the group that's fine too.

I'm so glad to see you back.. I've missed you..

-- Re: No pred...Cellcept

Tony, I started Cellcept a few months ago but had to go off until after my AICD/pacemaker surgery (Jan 25 for cardiac sarcoid). I'm several weeks post-op now but with a rash under my left arm so can't re-start the Cellcept until it's gone. I had NO problems with the med and I will be glad to get back on it. Right now, my left arm is swollen (checked for clots but none there) so will see the EP doctor (he did the surgery) tomorrow about my arm. Cellcept was prescribed by my s Hopkins Sarcoidosis specialist in Baltimore. God bless you, BeckyTony <dancingangelsfarm (AT) hotmail (DOT) com> wrote:

Yesterday was one for the books. A small victory, but a victory none the less. Perhaps I was still raging from the pred...gosh, I hate that stuff. The doc began the conversation with the phrase "Have we tested you for MS?" and I snapped. Been there, done that, have the T-shirt, the jacket, the bopple headed dog & all of the souvenirs! Enough already! I walked through 15 years of symptoms, tests, and frustration. In the end, he conceded that in retrospect, the symptoms & test results are consistent with chronic sarcoid with skin, pulmonary, CNS & peripheral nerve involvement. He even wrote it on my chart! Halleluiah, the diagnostic phase is finally behind us...time to move on.He attributed the temporary loss of vision over the weekend to an ocular migraine. While not overly concerned, he told me to contact the office if the symptoms presented again. I wasn't familiar with the term or the event so I took his word, especially since we had bigger fish to fry. On to potential treatments. We talked about prednisone, the side effects, the auxiliary pharmacy to counteract the side effects (insomnia, anxiety, etc). I could tell that the doc wasn't a big fan. Then he told me about Cellcept (Roche labs), an immuno-suppressant, including benefits & risks, indicating that he has prescribed the drug for hundreds of his MS & sarc patients with a good success rate. OK, this is an off label use so here's the disclaimer..., the doctor met the criteria of 21 CFR (http://www.fda.gov/oc/ohrt/irbs/offlabel.html) by being "well informed …and using firm scientific rationale and sound medical evidence". I signed an informed consent form in return for the rx & went off to surf the net to find out what else I could. My biggest concerns are the side effects…possible infections due to the suppressed immune response, increased risk of skin cancer (4.2%) & lymphoma (<2%) , pain (76%) & headaches (24%) ...pain reported by 76% of the test group without much of a description as to what type / level...the pain & headache are a real concern for me considering my present state, not to mention the thought of purposely increasing my risk of cancer…sad to realize what risks one is willing to accept once you've surpassed your threshold of pain twice over. Regardless of the not so good symptoms, the pred reduced the headache, reminding me of what life used to be like. I want that life back. I filled the rx yesterday afternoon. If nothing else, I'll give it a go for a month. I always have the option to stop if the treatment is worse than the disease or otherwise ineffective... peace to you, my friends. Tony

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

March 21, 2007

Missed you too ! Surgery was tough and the doctor had to do something he had never done before...he used a spinal needle to get to my subclavian vein to thread the lead to my right ventricle (screwed it in once there). But, the worst part was I had severe wheezing, shortness of breath, and chest tightness, along with many, many PVC's, muscle pain, etc. for several days after the surgery. I have had a problem with scoline (paralytic) during surgery in the past (severe muscle pains) so was told to make sure I told any future anesthesiologists this so would never get it again. I had a typed letter placed in my chart, told my anesthesiologist myself, and it was even listed on my red allergy bracelet and I was STILL given the med. Could have caused my breathing problems. Now, my upper left arm is about 2 1/2 inches larger but no clot via sonogram. Will see EP guy tomorrow...he's thinking the lead may be

impeding blood flow but hopefully I will develop collateral circulation to compensate. I haven't been on the computer much and just am now getting back to where I really feel up to it. You remain in my prayers...Blessings, Becky wrote:

Becky, I've been so worried about you! I've asked several times if anyone has heard from you and thank god you posted.. I lost your phone number and didn't know how to get in touch.. I hope everything went well and that your slowly getting back on your feet... Email me at topdat (AT) bellsouth (DOT) net if you want or if you want to talk through the group that's fine too. I'm so glad to see you back.. I've missed you.. -- Re: No pred...Cellcept Tony, I started Cellcept a few months ago but had to go off until after my AICD/pacemaker surgery (Jan 25 for cardiac sarcoid). I'm several weeks post-op now but with a rash under my left arm so can't re-start the Cellcept until it's gone. I had NO problems with the med and I will be glad to get back on it. Right now, my left arm is swollen (checked for clots but none there) so will see the EP doctor (he did the surgery) tomorrow about my arm. Cellcept was prescribed by my s Hopkins Sarcoidosis specialist in Baltimore. God bless you, BeckyTony

<dancingangelsfarm (AT) hotmail (DOT) com> wrote: Yesterday was one for the books. A small victory, but a victory none the less. Perhaps I was still raging from the pred...gosh, I hate that stuff. The doc began the conversation with the phrase "Have we tested you for MS?" and I snapped. Been there, done that, have the T-shirt, the jacket, the bopple headed dog & all of the souvenirs! Enough already! I walked through 15 years of symptoms, tests, and frustration. In the end, he conceded that in retrospect, the symptoms & test results are consistent with chronic sarcoid with skin, pulmonary, CNS & peripheral nerve involvement. He even wrote it on my chart! Halleluiah, the diagnostic phase is finally behind us...time to move on.He attributed the temporary loss of vision over the weekend to an ocular migraine. While not overly

concerned, he told me to contact the office if the symptoms presented again. I wasn't familiar with the term or the event so I took his word, especially since we had bigger fish to fry. On to potential treatments. We talked about prednisone, the side effects, the auxiliary pharmacy to counteract the side effects (insomnia, anxiety, etc). I could tell that the doc wasn't a big fan. Then he told me about Cellcept (Roche labs), an immuno-suppressant, including benefits & risks, indicating that he has prescribed the drug for hundreds of his MS & sarc patients with a good success rate. OK, this is an off label use so here's the disclaimer..., the doctor met the criteria of 21 CFR (http://www.fda.gov/oc/ohrt/irbs/offlabel.html) by being "well informed …and using firm scientific rationale and sound medical evidence". I signed an informed

consent form in return for the rx & went off to surf the net to find out what else I could. My biggest concerns are the side effects…possible infections due to the suppressed immune response, increased risk of skin cancer (4.2%) & lymphoma (<2%) , pain (76%) & headaches (24%) ...pain reported by 76% of the test group without much of a description as to what type / level...the pain & headache are a real concern for me considering my present state, not to mention the thought of purposely increasing my risk of cancer…sad to realize what risks one is willing to accept once you've surpassed your threshold of pain twice over. Regardless of the not so good symptoms, the pred reduced the headache, reminding me of what life used to be like. I want that life back. I filled the rx yesterday afternoon. If nothing else, I'll give it a go for a month. I always have the option to stop if the treatment is worse

than the disease or otherwise ineffective... peace to you, my friends. Tony Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

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March 22, 2007

Tony,

This is a good thing. Several members are on Cellcept for their sarcoidosis-- and it has seemed to help.

For me, I found that the combination of Methotrexate, Plaquenil and Remicade are keeping most of the sarcoid induced arthritis at bay-- so my pain level is much, much lower.

As for the side effects, I've found that I can lead a "fairly" normal life as long as I make sure that I wash my hands and keep them away from my face-- especially if I've been out shopping and pushing around the grocery carts, and if I pass on the "Pass the Peace" handshakes, hugs, etc at church, and such.

If someone has a cold, or the flu-- I stay away. I found myself doing my Christmas shopping online, and so was able to not be in the masses.

As far as worrying about the possiblity of side effects of lymphoma and tb and such with the Remicade-- as well as the MTX and Plaquenil-- it has raised my quality of life-- and that is worth it. (If any of these side effects actually happen, then I may change my mind..)

I think that it is so important that with any of the meds we are on-- that we picture these meds helping us to regain the quality of life we have. The more we live in fear of the "what if's"-- the more we disempower our potential healing.

Even if the Cellcept doesn't work for you, there are still many others out there that can be put together in combinations that can help.

Keep the faith,

Tracie

NS Co-owner/moderator************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

March 25, 2007

Becky

you are in my prayers. Marla

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Mac Tosh

Sent: Wednesday, March 21, 2007

6:02 PM

To: Neurosarcoidosis

Subject: Re: No

pred...Cellcept

Missed

you too ! Surgery was

tough and the doctor had to do something he had never done before...he used a

spinal needle to get to my subclavian vein to thread the lead to my right

ventricle (screwed it in once there). But, the worst part was I had severe

wheezing, shortness of breath, and chest tightness, along with many, many

PVC's, muscle pain, etc. for several days after the surgery. I have had a problem

with scoline (paralytic) during surgery in the past (severe muscle pains) so

was told to make sure I told any future anesthesiologists this so would never

get it again. I had a typed letter placed in my chart, told my anesthesiologist

myself, and it was even listed on my red allergy bracelet and I was STILL given

the med. Could have caused my breathing problems. Now, my upper left arm is

about 2 1/2 inches larger but no clot via sonogram. Will see EP guy

tomorrow...he's thinking the lead may be impeding blood flow but hopefully

I will develop collateral circulation to compensate. I haven't been on the

computer much and just am now getting back to where I really feel up to it. You

remain in my prayers...Blessings, Becky

<topdat (AT) bellsouth (DOT) net> wrote:

Becky, I've been so worried about you! I've

asked several times if anyone has heard from you and thank god you posted.. I

lost your phone number and didn't know how to get in touch.. I hope

everything went well and that your slowly getting back on your feet... Email

me at topdat (AT) bellsouth (DOT) net if

you want or if you want to talk through the group that's fine too.

I'm so glad to see you back.. I've missed

you..

-- Re:

No pred...Cellcept

Tony, I started Cellcept a few months ago but had to go

off until after my AICD/pacemaker surgery (Jan 25 for cardiac sarcoid). I'm

several weeks post-op now but with a rash under my left arm so can't re-start

the Cellcept until it's gone. I had NO problems with the med and I will be

glad to get back on it. Right now, my left arm is swollen (checked for clots

but none there) so will see the EP doctor (he did the surgery) tomorrow about

my arm. Cellcept was prescribed by my s Hopkins Sarcoidosis specialist in

Baltimore.

God bless you, Becky

Tony

<dancingangelsfarm (AT) hotmail (DOT) com> wrote:

Yesterday was one for the books. A

small victory, but a victory none