Bleev

What Should I Be Asking about Interstitial Lung Disease

24 posts in this topic

THANK YOU ALL for your kind sharing and posts since I've last visited. I saw my rheumatologist today and it appears I do have Lupus/Systemic Scleroderma overlap. The scariest part for me is that the CT scan report said "Severe Pulmonary Fibrosis". That has my head spinning. I do not understand how it could be severe without my knowing along the way to this point. I see the lung specialist on Monday. The rheumatologist put me on Plaquenil. I know I have to take it one day at a time. . . I keep reading about going to a sclero center for an expert---at what point in this journey is that recommended?

 

miocean: Thank you for sharing your journey and all of the good advice. I am so glad to read that things are holding steady for you. Guess that is our goal in this and I'm going for that too!

 

Amanda: Thank you for sharing about your friend. You have a special talent for always writing in such a positive manner.

 

Sweet: Thank you for your post about being in the same boat. I will go search now for the post you are referring to about your situation.

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Hello Bleev

 

It's recommended that you see a scleroderma expert immediately! Why delay seeing the people that specialise in your illnesses? :emoticon-dont-know:

 

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)

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Hi Bleev,

 

I was wondering how your appointment went with the lung specialist whom you were going to see? I hope he was able to give you some help and advice.

 

I hope the Plaquenil has begun to kick in for you as well and that you're feeling a little better.

 

:emoticons-group-hug:

 

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 Jo,

Many thanks for checking-in with me and sorry for the delay in my reply. I've started cyclophosphamide pills to hopefully begin halting the pulmonary fibrosis. I really appreciate this site and all of the information provided. It is helpful to read about what one is prescribed and why. Keeping my fingers crossed that this works smile.png

Hope you are doing well!

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Hi Bleev,

I'm really pleased to hear that you've started your cyclophosphamide treatment and do hope that it will improve the Pulmonary Fibrosis and ultimately the quality of your life. :i-care:

Thanks for your good wishes. smile.png


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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Hello Bleev

I hope the cyclophosphamide works well for your lung fibrosis and that you can soon share your good news with us.

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)

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Thank you so much Jo and Amanda for the encouragement and support.

 

Continued good wishes to each of you as well :)

 

Walking by faith and not by sight :)

 

 

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Hi Bleev ~ I was diagnosed with ILD in 2006 at the same time as my diffuse systemic scleroderma diagnosis. My pulmonary doctor prescribed Cellcept (Mycophenolate), an immunosuppressant. My lung function has gone up and down over the years but has remained generally stable with my oxygen diffusion hanging around 60%. I have never had to be on oxygen and my pulmonary doctor told me he has even seen slight improvement in his patients taking Cellcept. Best wishes to you with your treatment.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Barefut, Many, many thanks for sharing your story! It is very encouraging and I am glad that you are doing so well smile.png I've been reading many good things about Cellcept and had asked my rheumatologist about it. He said that after the cyclophosphamide he would look at Cellcept to maintain. Continued good wishes to you smile.png

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