Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Lung Function Tests


  • Please log in to reply
13 replies to this topic

#1 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 06 October 2009 - 03:06 AM

Today I went for a lung function test halfway through my IV Cyclophosphamide & Predisolone treatment & :happy-day: .......my oxygen & carbon dioxide transferance has improved from 48% to 65%!! :emoticons-yes:

I was well pleased as although I feel that my lungs have improved it's nice to have it confirmed & make sure I hadn't just imagined it! I'm due another test at the end of the treatment (Dec.) so hopefully it will have improved even more by then.

Three cheers for The Royal Brompton Hospital & their wonderful team.........how can I ever thank them enough?


Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#2 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 06 October 2009 - 03:18 AM

Joelf,
That if GREAT NEWS! I too hope they continue to improve.

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)

#3 sandra

sandra

    Senior Bronze Member

  • Members
  • PipPipPip
  • 83 posts

Posted 06 October 2009 - 03:59 AM

WHIHEW! JOELF!
Dee De De De Deee De DOIN THE HAPPEEE DANCE !
Thrilled for the progress Jeolf! De De de Dee De De Lah la lah
You are an inspiration to us all!
AWSOME
Sandra

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 06 October 2009 - 05:38 AM

Way to go Joelf! :emoticon-hug: It's great to have a fab medical team on your side and to reap the benefits of treatment particularly when it can have unpleasant side effects, makes it all worthwhile!

Look forward to even better news in December. :jump-for-joy:

Take care.
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)

#5 Joelf

Joelf

    Star Ruby Member

  • Topic Starter
  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 06 October 2009 - 07:05 AM

Thanks very much for the lovely supportive messages, folks :wub:

My husband and I are celebrating tonight with a large G & T each.

Cheers!!! :D

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#6 Buttons

Buttons

    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 610 posts
  • Location:UK

Posted 06 October 2009 - 09:04 PM

Joelf that is wonderful news & I"m not surprised you feel a celebration is called for so do have a G & T on me.

Buttons

#7 northendpoet

northendpoet

    Bronze Member

  • Members
  • PipPip
  • 22 posts
  • Location:Washington

Posted 07 October 2009 - 04:53 PM

Good for you! Great to be moving in the right direction and have some peace of mind.

And even when you know in your gut or heart, it's nice to have it confirmed, isn't it? :emoticons-yes:

Northend Poet
Northend Poet

#8 abarnes

abarnes

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 13 October 2009 - 03:11 AM

Hi Joelf

You were kind enough to reply to my post in (August?) concerning my wife, who had just been recommended the course of treatment that you are having. I am delighted that you are having such a good reaction, and it will also give great encouragement to my wife, who has just had her first IV.

Well done to the Brompton and to you!

Regards & best wishes


Andrew

#9 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 13 October 2009 - 01:17 PM

Joelf, that's truly fabulous news! Posted Image (Jumping for joy, if you hadn't guessed.) We'll all be looking forward to hearing December's results - good news is always welcome.

Warm regards,
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

#10 Tina

Tina

    Bronze Member

  • Members
  • PipPip
  • 17 posts
  • Location:North East England

Posted 25 November 2009 - 08:27 AM

Hi Joelf

At what point did 'they' decide on that course of treatment? I only ask as my lung function showed a transfer of 56% and at the moment I am only on inhalers, which I am finding do not help as much as they used to. I am just wondering if I might be offered something else. The consultant sent a letter to my general practitioner saying if I presented with breathlessness (which I did) they would have to consider the pulmonary unit at Newcastle.

Tina

#11 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 26 November 2009 - 03:49 AM

Hello Tina

It may be an idea to see your general practitioner and ask for the referral to be made rather than wait, as with anything the sooner treated the better. It would also give you peace of mind knowing your breathing problems are being investigated.

Although we may have good doctors it helps us to engage in our treatment rather than put all the responsibilty onto our doctors. Being your own advocate is very empowering as you feel you have some input into the decisions being made about you.

Take care and keep posting.
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)

#12 Joelf

Joelf

    Star Ruby Member

  • Topic Starter
  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 27 November 2009 - 09:55 AM

Hi Tina

I have been very, very fortunate in the treatment of my Interstitial Lung Disease; I was fortunate that the general practitioner I first went to when I had a dry cough that wouldn't go away realised that it wasn't 'just a chest infection' & sent me for a chest x-ray & then sraightaway sent me to a chest consultant. I presented the classic signs of breathlessness along with the dry cough & again was fortunate that the local chest consultant I saw first of all realised that it was a serious lung condition that was outside her expertise & refered me to a top lung consultant, Prof. Wells, at The Royal Brompton Hospital. I was again fortunate because at The Brompton they realised it was progressing quite quickly & had me in straightaway for virtually every lung test known to man; I was again fortunate that they knew all about Scleroderma & lung involvement & were able to diagnose it correctly & start me on the best treatment available & finally it was again fortunate that I was physically very fit & as my lung disease was identified early it has a fairly good prognosis & Prof. Wells felt confident that he could reverse the inflammation (although not the scarring obviously!! ;) ) on my lungs which is why the lung function tests showed an improvement. :)

Hardly a day goes by when I don't send up thoughts of thanksgiving to Prof. Wells & his wonderful team; the NHS has certainly come up trumps for me!!! :emoticons-yes:

Kind regards x

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#13 Joelf

Joelf

    Star Ruby Member

  • Topic Starter
  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 12 January 2010 - 07:00 AM

Hi All

Just a brief update on my treatment.

I went for a Lung Function test & then saw my consultant again & my TLCO (oxygen & carbon dioxide tranferance) has improved to.......73%!!!!!! :happy-day: :happy-day:

I am now officially one of their star patients; ;) both my consultant & the nurses said that it was one of the best results they had ever seen!!! :emoticons-yes:

I know that I'm always banging on about the NHS but I owe The Royal Brompton Hospital & Prof. Wells' team a tremendous debt of gratitude. I thanked the consultants & nurses profusely as I shall now be treated more locally & The Brompton will just oversee my treatment every 6 months or so, as will The Royal Free. I start on Azathioprine tomorrow & they seem confident that, coupled with the low dose of Prednisolone, I have got an excellent prognosis.

I do so hope that my post will give lots of encouragement to others on the same treatment as I have had; it's not exactly a barrel of laughs having IV Cyclophosphamide but it does seem to be very effective particularly in cases where there is a lot of inflammation so I think it's worth it!! ;) :D

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#14 Deb1million

Deb1million

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Maldon, Essex, UK

Posted 13 January 2010 - 09:03 AM

Thats great, well done Joelf!!
I hope you do well on the azathioprine and prednisilone. What a good improvement.

Big hugs
Debs :emoticons-yes: