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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 susieq40

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Posted 31 May 2010 - 03:49 AM

Well I started Cellcept 10 days ago, and have moved up to 4 pills a day started Friday. Since the last cytoxan was on the 7th of May. I only felt good until about the 15th, now I feel awful. Constant pain all over, and having a hard time moving about. Cytoxan helped the pain, every month, if only for a couple of weeks, but does Cellcept help the pain? Will have a blood test come Friday. Any info would be appreciated. I hate feeling bad...

HUGS TO ALL! :thank-you:

#2 Amanda Thorpe

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Posted 31 May 2010 - 06:43 AM

Hello Susie

My understanding is that it can take up to 3 months before the Cellcept kicks in. Don't forget that you will no longer be experiencing the cytoxan benefits and at the same time you're waiting for the Cellcept to work, you're bound to feel worse during this period of time.

Persevere because many people find Cellcept a great drug and you may too.

Take care.
Amanda Thorpe
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#3 Jeannie McClelland

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Posted 31 May 2010 - 09:45 AM

Hi Susie,

Many doctors add Plaquenil to help combat the pain and fatigue we experience. I can't say CellCept did much for either for me, but it certainly has done well for my lungs. And, as Amanda says, it may take a while for you to feel the full benefit. Keep your chin up and we'll keep our fingers crossed that everything settles down for you.

Warm wishes,
Jeannie McClelland
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#4 susieq40

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Posted 01 June 2010 - 03:47 AM

Thanks guys. I just hurt so much, I can barely move, so I just don't quite know what to do. It's crazy! I'll keep plugging away, but it's hard... :thank-you:

#5 Sweet

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Posted 01 June 2010 - 04:39 AM

Hi Susie,

I'm so sorry you are feeling so badly. I've never been on Cellcept, so I can't relate, but wanted to let you know I'm thinking about you. :flowers:
Warm and gentle hugs,

Pamela
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#6 lizzie

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Posted 01 June 2010 - 10:13 AM

Hi Susie, like Amanda I was told that with Cellcept it can take up to three months before getting the full effect. I didn't really have anything much in the way of pain before taking Cellcept , so unfortunately can't comment regarding that. It was very effective for me though and had very little in the way of side effects.

Lizzie

#7 susieq40

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Posted 15 June 2010 - 10:45 AM

:emoticon-bang-head: :temper-tantrum:
:temper-tantrum:
Man I just hate this pain! The doctor put me on lortab for the pain, but it knocks me out. It's really hard cause the boys are out of school, and expect mom to entertain them. It's been 3 weeks since I started Cellcept, and still feel the same.. Everything else I've taken has helped the pain, Methrotrexate, Humeria, Cytoxan. This really stinks! Anyone have any advise?

#8 gigi08

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Posted 15 June 2010 - 04:56 PM

Hi Susie, So sorry to hear about your pain. I will be starting Cellcept tonight for the first time. I've tried many meds in the past 2 years but none have helped yet. Hopefully this will. In your post you said that the other meds helped for you. I was just wondering why they took you off of them if they were helping? I was just on Humira for 4 months and it didn't do anything except teach me that I can give myself a shot :emoticons-yes: (something that I thought I'd never do). Hope you start feeling better soon.
Gigi08

#9 susieq40

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Posted 17 June 2010 - 05:09 AM

gigi, I was taken off of Humeria and Methotrexate because of my lungs. I didn't mind the Humeria or Methotrexate because I can give myself shots ok. I felt it was easier to get a shot than feel the other pain all the time. And those two did take care of the pain really well. Cytoxan, helped some, but this cellecpt don't seem to be working really well, thinking of call ing the doctor again, to see if she has any ideas, I hate taking pain meds, cause I'm such a zombie, and my kids need me....Hope you all are doing ok today..HUGS!

#10 lizzie

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Posted 17 June 2010 - 06:23 AM

Hi Susie, I was taking Cellcept and now take Methotrexate. I found that the Cellcept took longer to fully "kick in" (was almost 3 months as the rheumatologist had warned) than the Methotrexate, but when it did it was extremely effective (more so than the Methotrexate). It might be worth perservering with it a bit longer, although is hard when you are in pain.

Lizzie

#11 omaeva

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Posted 18 June 2010 - 05:58 AM

I was on cellcept for a while for the pain, and methotrexate, I have to say neither helped with pain for me. I ended up just on a cocktail of pain medication and pain medication to supplement.

#12 pieski

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Posted 23 June 2010 - 06:44 AM

I have been on Cellcept for over a year. It isn't a pain reliever. I have also been having a great deal of pain and was put on Lyrica. It has helped a lot. Really, a lot. Maybe you can ask your doctor about it.
~ Teresa~

#13 gigi08

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Posted 25 June 2010 - 04:42 PM

Hi Teresa, You said that Cellcept is not a pain reliever. I am just wondering what the purpose of it is? I thought that was why the Dr. put me on it, to help with the joint pain. Nothing else has worked so far.
Gigi08

#14 Jeannie McClelland

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Posted 26 June 2010 - 03:14 AM

Hi Gigi,

CellCept is an immune system suppressant. If your pain is secondary to scleroderma (that is, scleroderma is the underlying cause of joint/muscle pain), by treating the scleroderma there should be some benefit to whatever is being affected by the scleroderma. As I understand it, when the immune system gets itself in a tizzy and is treating everything as a hostile invader, one of the things that occur is inflammation and the inflammation is where the pain comes from. Other things can obviously occur too, like fibrosis, vaculitis, etc.

If your pain increases or persists after you've been on CellCept for a couple of months, it would be worth mentioning to your doctor.

Warm wishes,
Jeannie McClelland
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#15 Amanda Thorpe

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Posted 26 June 2010 - 08:36 AM

Hi Gigi

Man, I never wanted to describe myself using the words "chronic pain" but it can be part and parcel of scleroderma. I was on Cellcept for 10 months and am now on methotrexate but I can't say whether the pain I get now, which is worse and more frequent, is due to the change in medication or disease progression because scleroderma was progressing.

What I do know is that pain is now like an old but annoying friend that I have to accomodate and manage as best I can. My new best friend is pain killer! :lol:

Take care.
Amanda Thorpe
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