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Amanda Thorpe

Back on the good stuff

20 posts in this topic

Hello All

 

Last year (sounds like a long long time ago) I stopped cellcept to see if it was the cause of headaches/migraine cycle and the verdict was inconclusive so I have gone back on it to see what happens. I was off it for 4 weeks and per my rheumatologist that was long enough for it to leave my system, it would be gone after 2 weeks and I gave it another 2 to see how things settled.

 

Well not being a patient (pun intended) person I went straight back up to the max dose (no idea if I was supposed to or not as I never asked) and can say it does cause nausea for sure. Tuesday I went out in the car with my sister to shop but instead puked into a plastic bag as she drove me back home some 10 minutes into our journey. Whilst I was mid flow she asked me if there was a receipt in the bag (returning a jacket in it) and I said no but there were green flecks in it and I didn't remember eating anything green that morning. :lol:

 

One thing I do notice on the cellcept is that my body temperature is raised and I get tingling in my hands but off it the pain in my feet was worse. Win some lose some I guess.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Oh Amanada, you poor thing! That must have been awful for you....yet you still managed to make me laugh about the receipt.... :)

 

I hope you're feeling somewhat better now! Take care.


Sending good wishes your way!

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Amanda, thanks for the laugh, I always look forward to your posts! Sorry to hear about the nausea but hope the Cellcept works for you this time around!

red

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WOW - what a nasty side effect!!!!! Glad to see it comes with a dose of humor. :)

 

Sorry to hear that cellcept is causing you such problems. If I take my cellcept on an empty stomach (as prescribed), it sometimes causes reflux and I end up throwing up, but no nausea - just that wonderful reflux cough that won't end until it rids itself of whatever.

 

So will you be discussing your options with your doctor? Sounds like cellcept is not working 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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Good morning, Ladies,

 

I don't take my CellCept on an empty stomach either. Because of the Nissen fundoplication, I can't puke (supposedly, never tried though :P ), but if I take it on an empty stomach, I get a fair amount of pain and some nausea. So I don't. I've got a friend who takes it because she's a kidney transplant recipient and she NEVER takes it on an empty tummy.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello all I am new here. I am so happy I found a group who has some of the same things going on. I was told I had Scleroderma over 6 months ago, I am in so much pain a lot of the time and they have had me on many different medications.

 

Right now I am taking Cellcept 2000 mg a day. I have only been on it for 3 weeks. I was on methotrexate injections but did not work. I have swollen angles and legs and now my hands and arms and fingers swell up and hurt so bad. I can not even do everyday things with out them hurting and now I have started loosing mobility in my left hand from time to time. My white count stays very low all the time and now I have very high inflammation in my blood I never had before. The pain and weakness and tiredness gets so bad at times.

 

I am a wife and mother of a 15 and 16 boy and girl. I do not know what to do to make it less painful or easier to live with...any ideas? I am usually a very happy person and have jokes on every thing. I even had to go on a antidepressant pill first time ever. My rheumatologist says that's normal. Please any help on understanding this would be great. I had a nissen fundoplication done 2 years ago because I have Barrett's. I am only 34 and this is all crazy.

 

Does anyone know if Cellcept works?

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Hi Pdfangels,

 

I'd like to welcome you to the Forum too. I'm sorry you're going through such tough times.

 

Have you had a chance to use the search facility for our main Sclero.org site? It's located at the top right of the page, above the names of the Sclero Forums Team. You can search on any topic or subject you'd like more information on. For instance, there is a good page on Emotional Adjustment and Coping, which offers some good tips. There is also a way for you to search the Forum itself - that's located at the right hand end in the purple bar. You can see what others have had to say about things like pain, fatigue, and so on.

 

The searches are a good way to get started, but I'm sure more of us will chime in with suggestions as time goes by.

 

Warmest wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I was actually looking for info on autoimmune hepatitis, which is what I have and I just came across the comments on Cellcept. I have been taking it for over two years. I started out with some of the nasty side effects that you are dealing with but I have found that if I take it with food and stay on a bland diet for acid reflux I do much better. Nexium is also very helpful, but it does take a couple of weeks to kick in.

 

When I first started taking it I was in serious shape from large doses of prednisone and some of the other usual drugs did not work for me. I also had horrible migraines from the prednisone. Now I take a beta blocker to take care of any headaches and I am off prednisone. I look and feel like a new person but the doctor had to lower the Cellcept dose to 1500mg per day to minimize the side effects. Fortunately I have great doctors who are willing to help me get rid of the side effects. Don't give up. Good Luck.

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Dear llbipp,

 

I noticed that this is your first message. Welcome to Sclero Forums! And thank you for your good input regarding your experience with Cellcept, too.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Cellcept has been a helpful medication for me but it took a while to start working (6 months). My first year was really tough but I am doing a lot better now. What I learned that first year was that it is best to just take things one day at a time.


Rosa

Diffuse Sclero

dx Jan 2006

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I started taking CellCept in September 2008 as was experiencing skin thickening/tightening. Unfortunately 3 weeks ago I developed an oesophageal haematoma and had to spend 12 days in hospital. Both the gastro and rheumatologist thought that this was probably due to the Cellcept so have reluctantly had to stop taking it, just when I was begining to feel it might be working. I was told that this is a very rare event and the rheumatologist said that they have never had anyone experience this problem with Cellcept, so shouldn't put anyone else off taking it. I really am so disappointed to have to discontinue as it does seem to have been of benefit to others. I think my only other option is cyclophosphamide, but really don't want to have that.

Lizzie

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Hello Pdfangels

 

Welcome and sorry things are so hard right now, the beginning is the worse bit. You're adjusting to a progressive illness and it takes time. Allow yourself to express your real feelings, although you are a naturally positive person don't just smile and pretend all is well.

 

To move on to the next phase, and you will, get the most out of this one. Cry, scream and shout as you need to, ask for and accept help and post on this forum. There is always someone here who has been there, done that, got the T shirt so you need not be alone in your experience.

 

Please also talk to your doctor about pain relief because it is available. Constant pain wears on even the most positive of us. In addition trying to communicate with those around you what it's like to be in pain day in and day out can be frustrating when they (thankfully) have no idea what it is actually like. Oh so many here on this forum do!

 

Cellcept takes a few months to kick in and meantime your disease is still active, if cellcept works for you it will work well. Ask all your questions of your doctor and maybe here and educate yourself regarding scleroderma as forwarned is forearmed BUT get your info here as it is accurate and not inflammatory as so much on the internet can be. Many have scared themselves witless reading elsewhere! :lol:

 

All in all you are now in a place you would not choose to be in nevertheless you are. This does not mean it's the end of the road because you will move forward it just takes time. Your life may be very different from what you thought it would be but it can still be a great life full of hope, joy, love and all those gooey good things. Just give yourself time to adjust your horizons, don't rush it and remember your are not alone in this, your ISN family is here for you.

 

Take care and feel free to pm me if you wish.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Llbipp

 

Thanks for the encouragement. :lol:

 

I don't know anything about your illness but am glad cellcept is a better drug for you and that you found the cause of your migraines and were able to get rid of them. Having good doctors is half the battle and it's great when a doctor helps to alliveiate side effects.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Lizzie

 

Sorry you have been so ill and that you have to stop taking a drug that was helping you.

 

You are obviously one of the "one in a hundred thousand" people who get the weird and unusual side effects. :lol:

 

My mother once took a medication that had a rare side effect of "black tongue", no idea what that was and she didn't get it so my curiosity was never satisfied, how selfish can you get!

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda- Cellcept needs to be increased slowly. So, I was supposed to start on 1000 and after a week with no bad effects to go to 2000. However, knowing the slower one goes up in general with meds, unless it is urgent you go on the whole dose ASAP, I started at 500 for a few days, then went up to 1000, then 1500 for a few days, etc... I think I avoided bad effects as my body got used to it in a more gradual way. Shirl.

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Amanda,

 

Hope you are much better by now. It is nice to find something that works huh? Wish good things for you; thanks for all your posts and the encouragement you give to everyone. Thanks for the easy laughter too.

 

Welcome to all the newbies too.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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Hi Pdfungels;

 

So sorry to hear of all of you problems with your meds. I have been ill with lupus diagnosed in 1985 and scleroderma diagnosed in 1990. Over the years my health has gotten worse but I manage to stay stable due to what I believe is my combination of Cellcept and injections of Methotrexate (couldn't take it orally). I was put on these two drugs by a Mayo Clinic Rheumatalogist who I saw for a second opinion since things were going badly for me at the time and I thought I needed the input of a second doctor. Right now I have many different specialists who keep in touch and share info about me. It helps to have more than one doctor in your court sharing thoughts, ideas, and lab work about you. I do hope you find the right dose of meds and begin to feel better. Lets face it, no one likes being sick :(

Warm Hugs,

Flower

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