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LouiseH

Treatment for improving lungs?

5 posts in this topic

Hi just after some advice really, I've recently noticed a deterioration in my lungs and my consultant says that I should try a treatment through an IV which should help with the inflammation around the lungs and should improve my breathing.

 

Has anyone heard of this before or had it and if so what are the side affects to this and what was the results like.

 

Many Thanks for any help.

 

Louise.

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Hi Louise,

 

Sorry to hear that you've noticed a deterioration in your lung function.

 

I'm assuming that your consultant has suggested IV Cyclophosphamide and I can give you some first hand advice regarding this, having had the treatment myself. I had 6 four weekly infusions of the drug and whilst it is a powerful medication, to be treated with respect, I found in my case that the means justified the end. ;)  One of the side effects is that it can affect the bladder, so therefore it's very important to drink copious amounts of water throughout and after the infusion. I was given a drug to protect my bladder before each infusion and also an anti-sickness infusion, as the drug can also cause nausea. However, I had very little side effects from the treatment and although one of my worst fears was that my hair would fall out, as it is a chemotherapy drug, thankfully, that didn't happen.

 

My lung function improved dramatically from 48% at it's worst, to 73% at the end of the treatment and apart from a few little blips has continued to improve ever since. I would emphasise, however, that everyone reacts differently to the drug. I was very fortunate in that my lung fibrosis was caught in the early stages, I was very fit and a life long nonsmoker and my lungs were in good shape to start with, so the Cyclophosphamide treatment I received was extremely successful.

 

If your consultant does decide to treat you with this drug, please do post again and let us know how you get on with it.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Louise and it is SO nice to meet you!

 

I am so happy you have the doctor working for you that you do...seems to be well up on the necessary treatment for you!

 

I am also thrilled Jo posted her experience as well; she can also be a great resource for you.

 

I hope you get along well with your treatment and respond well to it.

Please let us know how you are doing and post often :thank-you:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi,

 

I've just had intravenous iloprost for my Raynaud's, however it also helps with the Raynaud's you can't see internally, and I have noticed that my lung function has really improved since having it done!

 

Lisa :great:

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