Sharonvandee

Update lung specialist visit

12 posts in this topic

After a long wait and a few test I finally have reasons for being so breathless. After looking at my ct scans he informed me that I have early stage interstitial lung disease (ILD) and pleural fibrosis, this along with moderate scoliosis invading my lung space and deforming the lung shape, and the fact that I am aspirating because of my reflux, so at least now I know what the problem is. He wrote up a management plan, kept my scans to share with a fellow lung specialist. So now it all begins with regular monitoring and treatment .

 

Has anyone else got these issues and if so what sort of treatments are out there?


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Hi Sharon,

I'm sorry to read your post about your diagnosis with ILD, but at least now you know why you feel the way you do. I am in a similar situation except mine has been going on now for at least 18 months, maybe a diagnosis soon I hope. Did your specialist give you an idea what the treatment would be?. I have a leaflet at home about ILD, I am not 100% sure, and I don't have any medical training, but I think maybe Prednisolone is one part of the treatment they may trial on you.

I'm sure some one else will chime in soon. If you want to PM me at anytime about anything, you are welcome to.

 

Take care

Celia

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I just read a report on chronic renal failure with scleroderma and it states that treatment with prednisone strongly increases the short-term risk of developing scleroderma renal crisis (sudden kidney failure) . Make sure you ask your doctors!! The article was on the sclero.org website: Glucocorticoids, Steroids (Prednisone).

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Hi Sharon

 

Also sorry to hear of your diagnosis...hopefully now they can get you started on the right treatments to help lessen your symptoms.


Sending good wishes your way!

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Hi Sharon,
I have ILD and have been trying treatments for a few years now. I did 5 months of cyclophosphamide which helped a great deal. It held off the progression and lessened the symptoms for about a year and a half. Since then I have not been on any meds but have been in clinical trials. What is your doctors plan?

Hugs,
Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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I have ILD. I did 9 months of cyclophosphamide which did help a lot. Now after 2 years symptoms seem to be returning and I have been put on cellcept.


~ Teresa~

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Hi Sharon,

 

Sorry you have so much going on. Are you taking anything for your reflux and will you be seeing a GI doctor soon? There are some pretty effective treatments for reflux and aspiration prevention. Hopefully the doctors will get you on preventative treatments at least with the GI problems which could also tame some lungs issues from the aspiration. Will keep you in my thoughts and wish you well.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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lonetalisman, I would like to take a moment to welcome you to ISN forums. I see you jumped right in with a few comments. We look forward to hearing more about you and what type disease you have currently been diagnosed with. I hope you soon become fast friends with our members. Welcome aboard.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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anon Judy

 

thanks for your reply I am currently waiting for a nissen funduplication as all medicine have failed to work. My lung specilist is going to speak with the gastroenterologist to have it done sooner rather then later so fingers crossed.


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Sharon,

 

What a relief it must be to know there is a treatment in case medications don't work for reflux. It can really cause so much damage if not treated aggressively. I have read somewhere I think, that reflux might be a cause of lung fibrosis in some cases. I am glad they are setting up a procedure for you and hope with you it is sooner than later. It is very difficult to take so many meds for one symptom, I have 4 prescribed and heartburn still breaks through. You are in my thoughts and wish you well.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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