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Newly diagnosed

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#1 jacquelineb

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Posted 05 August 2012 - 05:46 AM

Hi, I am newly diagnosed (1 year) and still have difficulty understanding all the acronyms but feel too stupid to ask my rheumatologist. Can you tell me what TLCO stands for? What is a skin score of 17/51? I will probably have lots more questions, hope you don't mind.

#2 Joelf

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Posted 05 August 2012 - 06:32 AM

Hi Jacquelineb,

Welcome to these forums!

Please don't worry about not understanding all the why's and wherefore's of this bizarre disease; it was ages before I could even spell it correctly! ;) :lol:

TLCO is the transfer factor of the lung for carbon monoxide and is the extent to which oxygen passes from the air sacs of the lungs into the blood.

Skin scoring is used to determine the amount of skin involvement and thickening in Scleroderma and I've included links to our medical page on Skin Involvement and also Assessment of Skin Involvement in Scleroderma which I hope you'll find interesting and informative.

We do recommend that if possible our members consult a Scleroderma specialist as sadly a lot of rheumatologists do not really understand the idiosyncrasis of this complex disease.

Now that you've found our forums and joined our community please do keep posting and feel free to ask any questions you wish; you will find a wealth of help, advice and friendship here.

:emoticons-group-hug: I'm the red one!! ;)

Kind regards,

Jo Frowde
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#3 Amanda Thorpe

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Posted 05 August 2012 - 12:31 PM

Hello Jaquelineb

Welcome to the forums! Acronyms eh? Part of scleroderma I'm afraid and you'll be a dab hand at it by the end of the week! :lol: :lol:

Keep posting and let us know how you're getting on.

Take care.
Amanda Thorpe
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#4 jacquelineb

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Posted 06 August 2012 - 03:00 AM

Hi

Thanks for the info - it really does help. I will come off my mycophenolate tablets and be going to have chemotherapy in September and am quite apprehensive - has anyone else had this and did it help?

Jacqueline

#5 Amanda Thorpe

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Posted 06 August 2012 - 03:53 AM

Hello Jacqueline

Jo has had cyclophosphamide (chemotherapy) for lung fibrosis and will no doubt post about it soon. Many people with scleroderma induced fibrosis have a chemotherapy drug and do just fine. Whatever the drug, it's given at a much lower dose than it's in cancer patients so there's no total hair loss and projectile vomiting, at least I've never heard of it on these forums!

If it's cyclophosphamide you're going to have I know you have to drink lots of water to flush it our of the bladder as it can damage it. When I was diagnosed with myocardial fibrosis I can't tell you how relieved I was to be told it was inactive so I didn't have to have cyclophosphamide. Yes, I know this means by the time the fibrosis was found the damage had been done but I have interstitial cystitis and a small, thickened bladder so no way could I take any chances with it, if it gets anymore useless I'll ditch it!

Take care.
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#6 Joelf

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Posted 06 August 2012 - 12:59 PM

Hi Jacqueline,

As Amanda has said, I've had 6 monthly IV infusions of Cyclophosphamide (chemotherapy drug) and whilst obviously it's not something I would have chosen to have, the treatment, in my case, was very successful and not as alarming as I feared. One of the less pleasant side effects, as Amanda said, is that it can affect the bladder and so it's absolutely imperative that you drink lots of water throughout and after the infusion. I was given infusions beforehand of an anti sickness drug and also a drug to protect my bladder and although I did feel a little queasy after the fourth or fifth infusion, I never experienced dreadful projectile vomiting nor did my long, curly hair fall out, which was actually my worst fear. The drug given to treat fibrosis of the lungs is not given in such strong doses as it is to treat cancer, which is why the side effects are minimised.

As I said earlier, in my case it was very successful improving my TLCO from 48% to 73% and in fact my consultant told me last February that they could have pulled people in off the street with worse lung function tests than mine. Unfortunately, since then I have had a little flare up with my lungs, due to my reducing the amount of Prednisolone (steroid) I was taking but since increasing it again my lungs have once more stablised. I would emphasise, though, that everyone reacts to medications differently and part of the reason it was so successful for me was because a) I was very fit and noticed very quickly that something was amiss with my lungs and b) it was recognised and treated very quickly whilst still in the inflammation stage, for which I'm eternally grateful.

Do please let us know when you start your treatment and keep us posted as to how it's going.

Kind regards,

Jo Frowde
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#7 Amanda Thorpe

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Posted 06 August 2012 - 01:54 PM

Hello Jo

I didn't know you'd had a flare up, I am sorry, and glad that going back to your original dose did the trick. You're a success story and long may you continue to be as we need you here for sure!

Take care.
Amanda Thorpe
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#8 Joelf

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Posted 06 August 2012 - 02:05 PM

Hi Amanda,

Thankfully, it was really only a blip; my consultant at The Brompton suggested that as I had improved so much in February, I could cut the prednisolone down to 5mgs from 7.5mgs. Unfortunately, after about 4-5 weeks I noticed the cough and shortage of breath were returning a little and thanks to ISN and my knowledge of the disease, I forced myself not to panic, promptly increased the prednisolone to 10mgs and got my excellent general practitioner to refer me straight away to The Brompton, which she did. They then just confirmed the higher dose and suggested that this time I only reduce the steroid to 9mgs in a month's time and then 8mgs after another month and stay on that dosage until I see them in February again.

Serves me right for feeling smug and complacent!!! ;) :lol:

Jo Frowde
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#9 judyt

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Posted 06 August 2012 - 03:49 PM

Hi Jaqueline,

Sorry to hear that you are going to be on a Chemo drug, but better that than getting sicker I would think.

I just wanted to say that my husband has Multiple Myeloma which is a blood cancer and at the moment is more or less in remission, although they say it won't last. However about 18 months ago he was on a 20 week (I think) course of Cyclophosphamide and a steroid. He took the tablets at home once a week and the whole time he had only one episode of feeling nauseous and threw up. It was mid summer and he had got quite hot and along with the stimulation of the steroid that was probably enough to make anybody feel sick.

I know his illness is different from ours but I can't see that the low dose of the same drug would make very much difference. His biggest gripe was that the steroid kept him awake for too many hours. He did get lots done though while I was asleep.

Best wishes for a gentle reaction to your treatment.
Judyt

#10 rubydoo

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Posted 17 August 2012 - 01:36 PM

Hi Jacqueline,

I had 6 months of I.V. cyclophosphamide a couple of years ago. I suffered no side effects whatsoever and was very well looked after and made very comfortable throughout the procedures. The anticipation of the treatment is much worse than the real thing so try not to worry too much about it. I found that I could carry on as normal and never missed a days work because of it. Good luck and let us know how you get on.

Take care,

Helen