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bowbec

Cyclophosphamide vs Cellcept

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Hello Everyone,
I wanted to know the pros and cons of cyclophosphamide versus Cellcept.
I have diffuse Scleroderma.
My last tests revealed lung involvment. Since then, I have been taking cyclophosphamide(4 months). I am going to be on it for 1 year. I am drinking lots of water.
The only big side effect I have noticed is hair thinning. I really can't tell big improvements yet except that the skin on my hands is getting looser and my gastro problems may have improved some , so I must be responding in some way. It is so hard to know the difference in what works and what just happens with diffuse Scleroderma.
I will see my rheumatologist for a follow up next month. I don't think tests will be done until the year on cyclophosphamide is up...
I really do value the information I get on the forum.
Thanks in Advance!
Becky


Diagnosed with Diffuse Systemic Scleroderma May 2005

Raynaud's, GI, esophagus, skin and lung involvement.

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Hi Becky:

I started on cyclophosphamide and was on it for 4 months and then had to quit it as it started to attack my bladder/kidneys and I developed cystitis. My rheumatologist doctor wasn't really disappointed that I had to quit it as she didn't like the odds that I would be in of developing cancer down the road due to my having a protein marker for lymphoma and also have the Sjogren's. I just saw a new oncologist this last week and he too said that my being on cyclophosphamide can up the odds of my getting lymphoma due to my individual situation with this protein marker in my blood and my having Sjogren's.

I have been on Cellcept since last February. The only difference I can tell is that I have a little more give in the top of my hands only. The rest of my skin involvement is still the same and actually is increasing (I just had my quarterly appt with my sclero doctor 2 weeks ago). The lung involvement is getting worse and I am scheduled for a round of tests again on them in January, so neither drug has hampered the disease and I am still getting worse.

What she did do is increase my Cellcept to 6 pills a day instead of 4. She is also thinking about putting me on Methotrexate in addition to the Cellcept being the Cellcept isn't working. She is leaving and I am changing to a new doctor in January so she's going to leave that decision up to him. From what I understand Methotrexate is another form of chemotherapy also.

I haven't had any side effects that I'm aware of from the Cellcept. With the cyclophosphamide I had even more fatigue than I normally do and I also had the thinning of the hair. My hair has come back now and I'm glad. Now to think I may start this all over with the methotrexate in January isn't what I'm looking forward to. I was pretty close to thinking of wearing a wig as it was getting that bad.

I wish you luck. I don't think I drank enough water while I was on the cyclophosphamide so that probably didn't help my kidneys either so make sure your pushing the water.

Good luck and let me know how you're doing.

Warm hugs,

Peggy

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Hello Bowbec

 

I am into month 12 of cellcept max dose of 2g per day. It it my main med. I have diffuse SSc with wide skin and joint involvement. Internally I have bowel issues but nothing else so far.

 

I understand that Cellcept is meant to be good for skin and lung involvement. I have noticed improvements in skin and some joints and nothing has spread.

 

Side effects are hard to distinguish from sclero problems or side effects from other meds nevertheless my opinion is that I haven't had any I could definately name.

 

I hope you feel able to make the right choice for you.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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I did cyclophosphamide for 9 months about 2 years ago. I have lung involvement and it stopped the fibosis from spreading. I did mine IV once a month. My doctor did blood work every month and urine to make sure my bladder was ok.
My lungs have gotten a bit worse so I am going to be starting cellcept next month.


~ Teresa~

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Hi Becky, I recently have had some progresion of skin involvement ( I don't have lung involvement) . The Rheumatologist gave me the choice of trying either cyclophosphamide or CellCept. I decided to go with CellCept. I have now been taking it six weeks and have no side effects other than short lived episode of diarrhoea when I upped the dose. I hadn't noticed any improvement in my skin but just today I think I am starting to see some change., My mouth does not feel as tight and can pinch more skin on the back of my hands. I also have mild psoriasis, and the plaques (that I have had for absolutely ages) are begining to disappear - which signals to me that the CellCept really is doing something.

Lizzie

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Hi Becky,
I was on IV cyclophosphamide for 5 months and it stopped the fibrosis from spreading in my lungs for a year and a half. I have not tried cellcept so I can't compare the two. Currently I am in a drug study for a new drug to trat fibrosis. Hopefully they will have a positive outcome....

Hugs,
Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Becky,
I was placed on oral cyclophosphamide about 2 years ago due to increasing lung fibrosis. I only tolerated it for about a month and was taken off. I was later put on cellcept. Originally, my rheumatologist was following the study where you stay on oral cyclophosphamide for a year, then switch to cellcept. Here's some information if you're interested:

Oral cyclophosphamide for pulmonary fibrosis.

I've been on cellcept now for over 1.5 years and tolerating it quite well. My lung are stable and have actually seen some improvements. Just keep a breast of how you feel on the cyclophosphamide. Some people do quite well, but some do experience nasty side effects. Good luck! I hope it all works for you.

Big hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thanks to all for the information!
One thing that I didn't mention was that my doctor stopped the Methotrexate when he put me on cyclophosphamide. I am taking the cyclophosphamide pills not IV. Also fatigue was extreme when I first started but now back to normal. (whatever that is...)
I am still working 32 hours a week. (which is full time where I work).
All in all I am feeling quite well, but dreading cold weather of course!
Thanks again!
Becky


Diagnosed with Diffuse Systemic Scleroderma May 2005

Raynaud's, GI, esophagus, skin and lung involvement.

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Here is information about the study..you can find some information here: Sclero lung study It is under Pulmonary Fibrosis with Systemic Sclerosis

 

It is a long study.. I enrolled in March and I will not be done until next month. It consisted of 7 dr visits, 2 echo's, 8 or 9 pft's, three infusions which each required an overnight stay at the hospital as well as many visitis to have labs done. Unfortunately I won't know if I had the placebo or not until all of the centers are done and the infomation has been reviewed which will probably be late next spring. AT this time, I believe I had the placebo (the main reason being I have been in tow other studies and I have had the placebo's in those so it is just my luck) but I am also hoping at this point that I do have it because I don't feel any better. So if I did have the actual drug then it didn't really work. My fingers are crossed.....

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Becky!

When I was first diagnosed 10 years ago, I wanted to try cyclophosphamide but my doctor thought otherwise. It's use then was relatively new sort of like cellcept now. I believe back then it would have helped me tremendously because it is a strong and aggressive medication, works especially well on lung involvement. I would think its temporary use in the early stages is helpful. I'm taking cellcept right now to keep my condition stablized and haven't had any bad side affects. Cellcept turns off the autimmune system which is believed to stop the progression of scleroderma, and some people can also experience reversal of symptoms. Both have to be monitored for possible side effects as with any medication.

I'm glad you feel better and working. I'm dreading the cold weather too!

Hugs,
Razz


Live well, Laugh often, Love much

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