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Cellcept


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#1 anderson

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Posted 05 February 2009 - 02:38 PM

I am new to this site and was wondering if anyone else is on Cellcept, what they think about it, what reactions and do they feel like it is helping.

#2 canon

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Posted 05 February 2009 - 04:45 PM

Hi anderson,

Can not help you with your question but wanted to welcome you to the forum. Maybe someone else will be able to help you. What did the Doctor say about it when he/she gave it to you and why they choose that medication.

With gentle thoughts,

Judy
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#3 barefut

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Posted 05 February 2009 - 05:28 PM

Hi Anderson,

Welcome. I have been on Cellcept for 3 years this month. I do believe it has helped to slow the progression for me. I was prescribed Cellcept for interstitial lung disease and my lungs have remained stable.

I have little or no side effects. I know others will chime in.

Take Care!

#4 Jeannie McClelland

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Posted 05 February 2009 - 05:30 PM

Hi Anderson!

Welcome to the Forum. I'm sorry you needed to find us, but I'm glad you did. We're a friendly bunch.

A lot of us are either on CellCept, have been on it, are going on it, are going back on it.... :D

I'm on it and have been for about a year and a half at a 2000mg per day level. I had a bad 'blip' about 6 months or so after I was diagnosed and my rheumatologist, who believes in being proactive, started me on it with a gradually increasing dosage over a month or two.

I've been extremely fortunate. I haven't had any major side effects and have been completely stable for the last year. Woohoo!

We've got a good page on CellCept that might provide you with more information. And, I'm sure lots of other folks will chime in with their experiences.

Best wishes,
Jeannie McClelland
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#5 janey

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Posted 05 February 2009 - 06:05 PM

Anderson,
Welcome! Glad you found us.

I've been on cellcept for almost 3 years. It's stabilized my pulmonary fibrosis for sure. I've had no new symptoms and no side effects from cellcept. For me, it's been great and went through several drugs to get to this one.

Please let us know how you are doing.

Big Hugs,
Janey Willis
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#6 Clementine

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Posted 06 February 2009 - 05:36 AM

Anderson,

I've been on Cellcept for the most part of the last 3 1/2 years. My pulmonary function tests and other things have been stable. I have been on 3 grams a day. I don't think anyone knows if 1 gram works better than 3 grams. I have never heard of anyone taking over 3 grams for treating Scleroderma.

I have not noticed any side effects that I can blame specifically on any drug I take. I did have a few months where my liver panel was high, so I went off Cellcept until they were normal. We aren't sure what caused that but now I am back on it and so far, so good.

You will need to get regular labs while taking Cellcept.

Good luck!
Clem

#7 Peggy

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Posted 06 February 2009 - 06:07 AM

I've been on Cellcept for about a year and I haven't had any problems with it. I haven't experienced any side effects and it has softened my skin on the tops of my hands. I go to my quarterly appointment in 2 weeks and have extensive lung testing scheduled so I'm anxious to hear how that goes. My lungs have been worsening and I am hoping that this drug has been successful in slowing that down.

Welcome to the forum! You'll love it hear as it's a great place to go to for questions, advice, and sometimes to just vent.

Warm hugs,

Peggy

#8 lizzie

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Posted 06 February 2009 - 09:14 AM

Hi Anderson, and welcome to the forum. I was taking Cellcept to try and stop progression of skin thickening. I started in Sept 2008 and felt fine, very little in the way of side effects. Unfortunately I had to discontinue in January this year as I had an oesphageal haematoma. The gastro/rheumatology doctors think that it was probably linked to taking Cellcept - although I am not convinced myself, but apparently it has been reported before, but is extremely rare. I wasn't on the Cellcept long enough to be able to say whether it was effective, although have only had a little progression in skin in last few months, so could have been.

Lizzie

#9 Amanda Thorpe

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Posted 06 February 2009 - 11:46 AM

Hello Anderson

Welcome!

Cellcept seems to be extremely effective and works well for those who tolerate it. I was on it for over a year and apart from some nausea, it gave me motion sickness, thought no other effects. However I have been off it now for about 4 weeks trying to determine if it is the culprit causing me endless headaches.

If the cellcept gives you little or no effects persevere with it, I do believe it helped stabalise me and caused skin softening.

Make sure the dosage is built up slowly and you have a blood test every 4/6 weeks to check in particular your liver function.

Take care.

Amanda
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#10 razz

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Posted 07 February 2009 - 09:16 AM

Welcome Anderson!

I have been taking Cellcept 1,000 mg a day since last February. I haven't experienced any bad side effects and it has kept scleroderma from progressing. The skin on my right arm has re-softened and loosened up. If I'm late taking my medication, I can feel the skin tightening on my arm. So I make sure I'm diligent about keeping my medication on schedule.

Let us know how you're doing!

Hugs,
Razz
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#11 anderson

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Posted 07 February 2009 - 11:45 AM

Thank you so much for getting back to me, I appreciate it. I am apprehensive about taking Cellcept. I started it 2 days ago. I have a newborn little girl and want to be able to take care of her. I have pulmonary fibrosis, and tightening in my hands, arms and face. I was diagnosed 3 years ago but did not need meds at that time, then I became pregnant and could not do anything.

Thank you again,

Anderson

#12 alice1

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Posted 10 February 2009 - 08:31 AM

I have been on Cellcept for 5 1/2 years and it has put me in remission . I am on a full dose 2000mg per day. My doctor has tried 3 times to reduce it but each time it comes back. My skin has softened, almost normal and my joints have returned to normal. Hope this helps.
alice1

#13 jefa

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Posted 10 February 2009 - 10:28 PM

I am glad to hear of your good results with Cellcept, Alice. I see this is your first post and I'd like to welcome you to the forum. I look forward to hearing more of your experience.

Anderson, I'd also like to welcome you to the forums and hope you find some relief soon, so you can relax and enjoy that little one, hard enough work under the best of circumstances. Do you have some help?
Warm wishes,
Jefa

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#14 anderson

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Posted 12 February 2009 - 06:29 AM

JEFA,
Thank you. I am very blessed to have alot of family support around me. My parents live less than a mile away and normally abduct my daughter as often as possible. It is awesome to see them with her as she is the first grandchild. I am also very lucky to have a very loving husband who insists on going to appointments, (I feel bad because then he has to take the day off from work) and is in love with our daughter.
thank you for your support,
Anderson

#15 sunny516

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Posted 03 April 2009 - 03:18 AM

Hi, I'm new to the forum. I had a bad reaction to Cellcept: the day after I took my first dose, I got the sensation of blacking out, very weak unable to stand, etc.. Of course I had to discontinue it. I already have low blood pressure, and my guess is that it dropped it even lower. Has anyone had these type of problems with Cellcept? I have to go back to the doctor mid-April to find out what is next.

Also, what do you all take for allergies? The pollen is really bad right now.

Thanks! :rolleyes:

#16 Jeannie McClelland

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Posted 03 April 2009 - 11:38 AM

Hi Sunny,

Welcome to the Forum. I almost missed you!

Your reaction to CellCept sounds horrible and very, very frightening. I have a lot of drug allergies (not CellCept, fortunately) and now I always try to take the first dose of a new medication when I can have someone around, just to be on the safe side.

Allergies. It's going to sound horrible, but what the pulmonologists and allergists at the center of excellence where I go strongly recommend sinus washes. They are so much in favor of them, all new patients get given the kit. Hmmm, I must say I've gifts I've liked more! :lol: It does work well and if you are careful about following the hygiene rules and instructions, there is not much in the way of risks or side effects.

Good luck on your upcoming appointment! Let us know how things go, won't you?

Best wishes,
Jeannie McClelland
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#17 debonair susie

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Posted 04 April 2009 - 11:01 AM

anderson, alice and sunny,

I would like to also welcome you here!

I am so glad each of you has chosen to take the brave steps of posting :D
I look forward to your future posts.

May each of you feel the warmth of allof the great folks here, on the forum.

I've not ever taken cellcept, but you're getting great feeback from members
"in the know"!
Special Hugs,

Susie Kraft
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#18 Amanda Thorpe

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Posted 04 April 2009 - 12:03 PM

Hello All

I am going to revise my opinion of cellcept side effects, it gives me crushing headaches so I have again given it the boot. I know I will may still get headaches/migraines but the amitriptilyne reduces the severity provided they are not cellcept induced, nothing touches those. The leaflet that comes with them does mention headaches as a side effect.

Amanda
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#19 sunny516

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Posted 06 April 2009 - 01:11 AM

Hello Everyone,

Thanks for the information. Im not sure what else the doctor will try to help stop the progression. I will keep you updated!

Sunny