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Bleev

What Should I Be Asking about Interstitial Lung Disease

24 posts in this topic

Hello, I'm new and scared of this illness. I've was diagnosed as having lupus many years ago and did not have too many issues with it. I just saw a rheumatologist last week and he said it looks like I have crest and interstitial lung disease. I have a CT lung scan on Friday and see the doctor again next week. What should I be asking him about scleroderma and the lung disease? Thank you in advance.

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Hi Bleev,

 

A warm welcome to these forums!

 

I'm sorry to hear that you've been recently diagnosed with Scleroderma as well as having had lupus for many years.

 

I can empathise with your feelings of worry and uncertainly as like you I also have Limited Scleroderma (aka CREST) and Interstitial lung disease. I've included links to give you some more information which I do hope you'll find helpful and may enable you to decide which questions you'd like to ask your rheumatologist.

 

I have had CT lung scans as well, which enabled my consultant to determine whether or not it was Scleroderma; I was very fortunate in that I was referred very quickly to a top lung specialist hospital, where they thankfully deal with many cases of Scleroderma lung involvement and were therefore able to diagnose me and start treatment quickly. Are you being dealt with by a Scleroderma specialist? We do recommend that you consult one if possible as sadly many rheumatologists do not have the expertise to deal with this complex disease. Also a Sclero expert would be able to advise you of the best course of treatment and your various options.

 

I can understand that you're feeling very worried and confused; you'll find that it's very helpful make a few notes and also take someone with you when you see your rheumatologist so that you can fully understand his explanation. I pressganged persuaded my best friend and then my husband to accompany me when I first saw my various consultants, although now when the consultant says "Is there anything you'd like to ask me?" I settle myself down, get out my notebook and say "Funny you should ask that" and proceed to regale the poor man with everything I've thought of since my last visit. I'm sure he wishes he'd never asked!! ;) :lol:

 

I'm very pleased that you've found our forums and joined our community, where you will find a wealth of knowledge and help. Do keep posting, won't you, and let us know how you get on with your CT lung scan and doctor's appointment next week.

 

:emoticons-group-hug:

 

Kind regards,


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)

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Hello, Bleev,

 

Welcome to the forum. I am also in the diagnostic process of this disease. I too feel fear at times. It is truly amazing the resources there are here between all the information under the "Medical" tab, as well as "personal stories", and the forums too. I have learned so much! Look forward to hearing how things go for you!

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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Hello Joelf and Chopper,

 

Many thanks for the warm welcomes and ALL of the information, links and tabs you provided. I have started to take a look at all of the information. I'm still kind of in a panic mode with this and trying to process. I couldn't sleep last night so I think a good night's sleep is in order will help with my state of mind. This is a great site and I feel so blessed to have found it.

 

Bleev

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Hello Bleev

 

Welcome to the forums! The good news is that lung fibrosis can be treated successfully and your lung function can improve as Jo can confirm from her own experience.

 

Let us know how the tests go, consider seeing a scleroderma expert if you aren't already and 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)

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Amanda, thank you for your outstanding post of encouragement! I am literally sitting here with tears of happiness running down my cheeks for this sentence of hope that you posted: "The good news is that lung fibrosis can be treated successfully and your lung function can improve as Jo can confirm from her own experience." I so much needed to hear that hope -- it has made all of the difference! Thank YOU so much!! By the way, I had taken a look at some of your informational videos and they are so helpful too -- Great Job!.

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Welcome Bleev

 

I'm sorry to hear you are so scared but believe me, it's totally natural. Things will eventually settle down for you there although I expect you might find that hard to believe since this is all so new to you...but it will in time.

 

One bit of good advice I suggest is that you not read everything you find on the internet, been there, done that, not going back. What I can tell you is that you have come to the right place on this site for factual information. Loads of support and knowledgeable people are here and it's a great place to ask questions. There is always someone in the know with experience. I'm forever learning new things here as well.

 

I too hope you seek out a scleroderma expert, if your rheumatologist is not already one? That was the best and smartest thing I did for myself.

 

I do hope you let us know how you make out and keep posting as well.


Sending good wishes your way!

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Thank you snowbird for your kind message! I am going to take your advice about being cautious with what I read on the internet--it can be overwhelming. I do not really know my rheumatologist's background. He is new to me. I went to him for a lupus eval at the advice of my primary care doctor. I have a history of lupus and had been doing well with it so hadn't even seen a rheumatologist for a few years. I thought he was going to say, "Good job, your lupus is stable, see you in a year". Guess that is why I'm so surprised that he began looking for CREST/scleroderma. My primary care doctor is helping me find a good pulmonologist. My CT lung scan is on Friday. But am learning to take it a day at a time.

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Hi Bleev,

 

I'm so pleased that Amanda's words have given you some encouragement.

 

I was very fortunate (as mentioned in my previous post) that I was treated at a top lung hospital and I underwent 6 monthly intravenous treatments with Cyclophosphamide. It's not a particularly nice drug to take but in my case it improved my lung function from 48% to 73% after the treatment, so I considered it worth it!

 

I must emphasise, however, that everyone responds to treatment differently and in my case I was very fit at the time so my lungs were in good shape to start with and because I was so fit, I realised very quickly that there was something radically wrong with me. The type of Interstitial Lung Disease I have is a fibrosing organising interstitial pneumonia and thankfully my wonderful consultants were able to recognise it as Scleroderma from the pattern of inflammation and scar tissue (ground glass) on my lungs.

 

You can see from the above that lung fibrosis can be treated very successfully, providing it is treated early and whilst at the inflammation stage. Please don't feel worried and scared; you can still have a good quality of life again. I would also agree with Snowbird's advice and try not to read a lot of scary information on the internet (easier said than done, as I well know! ;) ) You've taken the best step to recovering a little peace of mind by joining ISN as all our information is up to date and factual and there will always be an understanding ear to listen and help you.

 

Kind regards,


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)

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Jo, Many thanks for your reply!! You are extremely informative and that is very much appreciated. So, I guess I will know what type I have after the CT scan -- correct? My CT scan is Friday, then the next week I see the rheumatologist and the week following will see the pulmonary dr. I think I will feel better (mentally, at least) once I know exactly what I have to work with/options. Thank YOU again!

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Hi Bleev,

 

I'm very glad that you've found my reply helpful.

 

The only other point I would make is that even a Scleroderma specialist may not be able to give you a diagnosis after simply having the CT scan. Because Scleroderma is so difficult to diagnose it's usual for many more tests to be carried out in order that the complete picture can be seen. This is why it's beneficial to consult a Scleroderma expert.

 

In my own case, I had innumerable blood tests and practically every lung test known to man (barring a lung biopsy, as by then my consultant had a fair idea of the problem so didn't consider it necessary.) Unfortunately this is one of the worst aspects of having Scleroderma and many of our members have had a frustratingly long wait before being diagnosed; I believe the average time is 6 years. I'd had other Scleroderma symptoms for possibly 18 months or more before it became apparent to me that my lungs were affected, but even so my diagnosis was comparitively quick compared to other members' experiences.

 

I hope you will feel better once you've seen both the rheumatologist and your pulmonary doctor; certainly the waiting and uncertainty is one of the most worrying and upsetting parts of this complex disease.

 

Kind regards,


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)

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Dear Bleev,

I understand your fears about the future and wish you the best on you CT scan tomorrow. The people here can and will help you through all to come.

 

I have had ILD for 7 years now with ups and downs am and holding steady right now with about 50% lung function. I am following the classic pattern of diffuse scleroderma with sudden onset and major organ damage but, continuing the pattern, I should hold steady where I am.

 

If you get this in time, you should make sure they don't use contrast for your scan. Contrast is a dye they inject into you and, unfortunately, it can damage the kidneys. I don't mean to frighten you with this, sometimes contrast is necessary for a test, but should be avoided when possible. I have yearly CT scans without contrast and they are able to see the fibrosis in my lungs without it. If they do use contrast, ask to have your kidney function monitored, creatine especially through blood work and urinalysis, and monitor your blood pressure as well and if it goes high, notify your doctor immediately. Also ask whether it is a high resolution CT scan (HRCT)

 

One of the tests you will probably also need to have is a pulmonary function tests (PFT) which measures your lung capacity and your diffusion rate (DCLO - how your lungs put oxygen back into your body). You may also need a 6 Minute Walk Test which tests how your lungs function under exertion.

 

Please let us know how it goes and try to be calm. I know that is not that easy.

 

miocean


ISN Artist

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Hello Bleev

 

I forgot to tell you, I have a friend with ILD and she only has 50% lung function left but she has been living with scleroderma for 30 years anyway! I saw her a few weeks ago in the town centre, she was walking along and I was in my wheelchair, being pushed by Ma...and I have 100% lung function! :lol: Go figure!

 

Take care and keep us informed.


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,

 

Welcome to the forums! Looks like you and I are in the same boat. I just posted about my lungs a few minutes ago. I have CREST and Lupus as well. I'll be curious to find out what your CT shows, please do keep us posted. Hang in there my friend!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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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

ISN Chat Host

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

ISN Chat Host

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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