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I'm New Cellcept ?


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#1 Pat

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Posted 19 January 2007 - 08:08 AM

Hi, I'm new, although not new to MCTD which I have had almost 6 years. In an attempt to wean off of the last 5mg of Prednisone (which I cannot get off of for 2+ years now), I have started cellcept. As far as I know, I don't have organ involvement (such as lung disease), but do have severe joint pain, Raynauds, fatigue, sausage fingers, etc.

Can someone please tell me what kind of improvement I might expect withCellcept? Can I reasonably expect that it will manage my joint pain? What about Fatigue? Raynauds?

The biggest question I have is how long until I get some sort of appreciable improvement? I've been on it at 2gms per day X 1 month.

Any information anyone can share withme will be much appreciated.

Pat

#2 Heidi

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Posted 19 January 2007 - 09:00 AM

Hi Pat,

Welcome to the forums! I don't have any personal experience with Cellcept, so I will let others who have been on it for awhile answer your question. But I did want to take the time to welcome you. We are glad you have found us, but sorry it is because of MCTD. I am sure you will find everyone here very warm and encouraging and supportive....and very much willing to provide information and advice when able.

Again, welcome!
Heidi

#3 Sweet

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Posted 19 January 2007 - 12:19 PM

Hi Pat,

Welcome to the forums. I'm really sorry you are ill, but you've found the right place for information and support.

I am not on cellcept, so I don't have any first hand knowledge, but here is a link where you can view many discussion on it from people are are on it.

Cellcept

Again, Welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 HeatherT

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Posted 19 January 2007 - 03:04 PM

Hi Pat!
I am on Cellcept too. I started it October 16th but only 1g per day and then in Nov I went to 2g and now I am on 2.5, scheduled to be up to 3 by next week. My doctor said it could take up to 6 months to start working. So far I have not noticed that it has helped any. There are others on cellcept who have had good results.

Hope that helps!

Heather

#5 whirlway

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Posted 19 January 2007 - 04:53 PM

Pat, I have been on cellcept for several years now. I was taking 20+mg of prednisone a day for over 20 years. It took over over 6 months to wean down to 5 mg a day which I am currently at and taking 2000 mg of cellcept plus several other drugs. It has been the best thing that has happened, to get off the dreaded prednisone and actually feel half-way human. I tried several others before my rheumatologist put me on cellcept, including methotrexate and immuran. The immuran worked well, until I had elevated liver enzymes, the methotrexate made me very ill. Please feel free to send me a pm if you have any more ? ~whirlway

#6 barefut

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Posted 19 January 2007 - 08:10 PM

Hi Pat,

I've been on Cellcept for.....it will be a year next month.

I really can't say how or if it has helped or improved or slowed progression. I did start feeling better through the summer - less fatigue, muscle and joint pain and stiffness but I have always felt better in the summers.

Cold weather stiffens me right up and I have to say that today was one of the worst days I have ever had for muscle and joint pain and stiffness.

I went shopping for 2 hours today and when I got home I could barely get out of the car and into the house. I had to leave all my packages in the car for my 9 year old to bring in when he got home from school.

I am very frustrated. I have an appt in 2 weeks with rheumatologist and pulm doctor. I will ask for an increase in Cellcept and/or some more powerful pain relief than off the shelf NSAIDS.

I'm sorry if I don't give you much hope but that has been my honest experience and I'm sure you were looking for honesty.

Remember though that everyone is different and it does take awhile to kick in.

Good luck to you with it!

Sincerely,
Barefut

#7 Lori-Scleroderma Spouse

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Posted 20 January 2007 - 03:02 AM

Hi Barefut

My husband got up to 2000mg/twice daily of cellcept. He was like you, he did not seem to be getting any relief. He stopped the cellcept andstarted Cytoxon and IVIg in December with great results. After the first treatment his skin score dropped and he had more energy. He is scheduled for his third treament the first week in February. The cold does still bother him, but I think he is doing better. He has actually started going to the gym and doing just a little of working on the machines. THat is a big improvement. In NOvember he didn't even leave the house without me.

Pat sorry for the bad news about cellcept but I have seen it work for less severe cases. He progressed very quickly and his rhummy decided that we needed some very aggressive treatment. Good luck and you are in my thoughts.

Lori
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#8 Grandma Judy

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Posted 25 January 2007 - 07:25 AM

I have been on prednisone since March 2006 and recently I was put on cellcept to try to wean me off of prednisone. I have dermatomyositis. I have not been able to get my rash or the itch under control until a couple of months ago. Last week the dermatologist raised my cellcept from 50 mg to 100 mg and decreased my prednisone from 20 mg to 15 mg. Since that time I have had headaches and blood in my stool. Don't know if it is from the prednisone or cellcept. Taking cellcept at night before bed caused me to wake up in the morning with a headache. I take one pill in the morning as soon as I get up and it didn't seem to cause any problems. I have not found a good time to take the other one that I have without complications. The dr. just suggested that I try to take both of them in the morning or just take 1 1/2 pills. I'll see what happens. It's good to see what problems other patients experience.

Grandma Judy

#9 Grandma Judy

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Posted 25 January 2007 - 07:28 AM

Did you experience weight loss when you got completely off of prednisone. My weight is up and I have the chipmuck cheeks. At least I dont have any wrinkles. I am on 15 mg of prednisone and 1000 mg of cellcept. The dr. is trying to wean me off of prednisone. Did you experience any side effects with cellcept? Like headaches, stomach problems, etc? I have only been on it a couple of months but she just increased it. My body just doesn't seem to tolerate the extra 500 mg.

Grandma Judy

#10 bookworm

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Posted 25 January 2007 - 09:35 AM

I notice that several of you are trying to get off Prednisone and onto Cellcept instead. When I get a few free minutes, I intend to do a little research on this, but, for now, what is the advantage of Cellcept over Prednisone? Have your doctors said?

I realize that Prednisone lowers the immune system and puts one at risk of infections and so on, but surely Cellcept has some bad side effects, too. (?)

I am just wondering. I have an appointment with my rheumatologist in early Feb. and I'm making a list of questions for her. I am on 7 1/2 mg. of Prednisone right now and am trying to get it back down to between 3-5 mg., as it was before a bad flare-up of joint pain not too long ago, when they upped my Prednisone to 20 mg.

I haven't seen any problems with using the Prednisone -- haven't gained weight or felt like climbing the walls or anything! However, I do worry about taking it and would like to get off it. But I don't want to go to an even more "serious" drug either.

Mary in Texas


#11 whirlway

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Posted 25 January 2007 - 12:03 PM

Mary, I really think it depends on how much prednisone you take and for how long. Pred. is the med everyone loves to hate. I took anywhere from 10-60 mg a day for over 20 years. Now my body can no longer produce natural pred. on its own, I will always have to take at least 5 mg per day. I gained over 100 # and became Jeckyll & Hyde. I also developed osteoporosis from taking so much for so long.
I wanted desperately to get off the pred. so the first drug my dr tried was methotrexate. That was a disaster. I became violently ill and it didn't do much for my joint and muscle pain. Then came immuran. It did a pretty good job, but then stopped working so well. Then my rheumatologist put me on 2000 mg of cellcelp. I lost over 80# in 6 months. I feel almost human again. I still have pain, but nothing like before, and I don't have to worry about the continual bad side effects of the pred.
That is my take on the drug. Send me a pm if you want more info.
~whirlway


#12 bookworm

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Posted 25 January 2007 - 02:13 PM

Thanks for the information, Whirlway. I am going to talk to my doctor about this. I don't actually see any bad side effects on me with the Pred., but I do worry about the lowered immune system. I haven't ever been on more than 20 mg. unless it was one time when I was in the hospital. I know I was given Pred. then, but I don't remember how much. I do remember that I was in the process of tapering off when I went home from the hospital.

I wish I could gain a little weight! I am too thin!

I can't think of any more questions except does the Cellcept have any bad side effects for you?

Mary in Texas


#13 whirlway

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Posted 25 January 2007 - 11:51 PM

Mary, here are tsome of he side-effects of cellcept that I read about:

You can read about the possible side effects of cellcept by looking it up on the internet.

For me, my white count is usually low, however my last count was up to 4300, the highest it has been for several years. I already had trouble sleeping, so I don't think it added to that problem, already had the constipation from other drugs I take, so it didn't add that problem. I am definitely not going to get pregnant, had to had an early hysterectomy.
I do get blood tests on a regular basis, every two - four months and visit my rheumatologist about every 4 months. If I started having any of the symptoms listed, I would probably not take the drug, but I feel safer taking cellcept than I did taking large doses of prednisone.


Grandma Judy here is the best way to take cellcept:Take it on an empty stomach, 1 hour before or 2 hours after a meal unless your doctor tells you otherwise. I take all of mine in the am right after I get up, doesn't cause any problems for me.
~whirlway

#14 Grandma Judy

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Posted 26 January 2007 - 05:07 AM

I took both pills this morning for cellcept. It didn't cause me any problems this morning so that is what I will do. The dermotologist suggested that I cut one of them in two but the instruction sheet from the pharmacist said not to break them in two. I took them at 5:30 this morning and then eat breakfast an hour later. So far no headache or stomach discomfort like when I took it in the afternoon and bedtime. I exercise 30 to 45 minutes 4 times a week and prednisone still caused my weight to go up 10-15 lbs because of the water retention. I'm hoping cellcept will be my answer and can get me totally off of prednisone without the rash and itching coming back.

#15 whirlway

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Posted 26 January 2007 - 03:04 PM

Way to go Grandma Judy! Hope this is a good start for you.
~whirlway