Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.



  • Please log in to reply
7 replies to this topic

#1 Alexandra


    Senior Bronze Member

  • Members
  • PipPipPip
  • 46 posts
  • Location:Surrey UK

Posted 28 July 2007 - 03:01 PM

Hi everyone!
I'm back from Philadelphia!
I met Colleen briefly too which was just lovely,Colleen you are lovely!

I just wanted to write with some good news!
I recently finished 6 months of Cyclophosphamide infusions.A high monthly dose was given and it was quite tough but manageable!
It was for my rather severe pulmonary fibrosis.
I shall be going for a lung function next week to see if there is any improvement.The good news is this..normally my CK is very high (up to 7000!) because of my dermatomyosotis.I have just had a blood test,and as rather a good side effect of chemo my CK is down to 100 which is..wait for it...normal!!
First time in 17 years wey hey!!!
So my friends,sometimes these tough drug regimes really do have a beneficial effect!

Sending you all much love!

#2 Rachelle


    Senior Bronze Member

  • Members
  • PipPipPip
  • 58 posts

Posted 28 July 2007 - 05:00 PM

I love to hear about successes involving these disorders/diseases!! What exactly are the symptoms of dermatomyosotis? I know everyone probably has different symptoms, just wondering what it is basically and congrats!! Sounds you have been keeping up the fight for quite a while.

#3 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,284 posts
  • Location:Scotland

Posted 28 July 2007 - 09:54 PM

Hi, Alexandra. That is great news! I hope you are all rested up from your trip. I know what you mean about the prices. Each time I go home I stock up on silly things that just cost way too much in the UK. I am so glad you got double benefit from your treament. Please let us know the results of your lung function tests when you have them, too.

Rachelle, here is a link to our page on Dermatomyositis and Polymyositis. Hope you will find the information you are looking for here.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 Clementine


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 29 July 2007 - 12:25 PM

That is wonderful! I am anxious to learn what your new PFTs are! I love hearing good news. You do look very young!!! Very pretty lady you are.
Take Care,

#5 LisaBulman


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,133 posts
  • Location:Massachusetts

Posted 30 July 2007 - 12:09 AM

That is great news!! Please do let us know what your lung function number are. I went through the same treatment last year and as of my last pft my numbers had stayed the same. This is great because they hadn't gotten worse.

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)

#6 Alexandra


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 46 posts
  • Location:Surrey UK

Posted 30 July 2007 - 11:19 AM

Hi everyone!
Thank you so much for your best wishes I shall definitely let you know of my pft results.Before Cyclo my diffusion capacity was down to just 32%,so hopefully there will be a little improvement!
We actually had sunshine in Surrey today,it was beautiful!
Lots of love to you all

#7 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 30 July 2007 - 11:39 AM

Thrilled to hear that your trip was successful as well as enjoyable. One day, I too hope to personally meet someone from the ISN family. What a treat that was!

Congratulations for making through the treatments. I look forward to hearing the test results.

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)

#8 barefut


    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,158 posts
  • Location:NW Washington

Posted 30 July 2007 - 12:52 PM

Congratulations on your sucessful treatments! I always love to hear sucess stories. Thanks for posting and do keep us posted.