Reduced lung capacity scleroderma

Does anyone else have a scleroderma that reduces their lung capacity. Looking to connect with someone. Thank you in advance.

[Mlw79]

Hi Jenny, yes I have serious lung fibrosis as a result of systemic sclerosis. I have lived with this condition for almost 4 years and am 41 years old. If I can be of any help at all just give me a shout 🙂

[MysticShaman]

👋🏼 My scleroderma was accidentally diagnosed fall of 2019 when my cardiologist questioned what appeared as scars on my lungs on one of her tests. She sent me to a pulmonologist and given my history, attributed the scarring to my last bout with sepsis. Then, I went to a rheumatologist who had 2 patients with my liver autoimmune disease and she decided to test me for scleroderma on a whim- it was positive. Back to the pulmonologist who did lung function tests and scans and my lung capacity is markedly diminished. On the upside, I was already on inhalers for severe asthma, so monitoring every 3-4 months for change.

[cheryldn]

Hi JennyEnstone

I was diagnosed with Systemic Scleroderma in April after 12 months of all sorts of symptoms & more recently it’s been confirmed as Diffuse Systemic Sclerosis as it’s affected skin, lungs & oesophagus. I’m 1/2 way through cyclophosphamide infusions which I had felt an improvement albeit slightly each time. Unfortunately 2 days after the last session (4th) I had a choking episode on some phlegm which was quite frightening but not the first time! I am on a raft of medication & have had numerous X-rays, scans & so many bloods taken I’ve lost count. I do feel better than I did 6 months ago & maybe this now is what I’ve got to live with. Luckily this has all happened through Covid for which I’m really grateful to my Rheumatologist & her team. Although I feel iv hit a wall now & at a point where I worry I’m not going to get any better or hopefully not any worse. I’ve been back at work since shielding stopped, not only because we need the money but for my sanity as being at home for so long allowed me to dwell on everything.

[trunchalobesity]

Hi Jenny

I’m 52 and have diffuse systemic Scleroderma with long term lung involvement.

I was diagnosed in 2002, when my daughter’s were 1, 2 and 3 years old. It was a devastating situation as my lung disease continued to progress.

I had oral methotrexate, and two 6 month courses of cyclophosamide by infusion.

My current medication of choice is mycophenolate more life. This has improved my lung function.

I’ve been on long term (18 years), steroids, prednisilone. I also have oesophageal problems so my bed head is on bricks to ensure stomach acid isn’t aspirated into the lungs during my sleep.

I take all sorts of other drugs for slow motility of my stomach and bowel. I also suffer from SIBO, all down to Scleroderma.

But the good news is I’m still here, I’m still keeping positive and healthy as much as I can, with diet and exercise.

I wish you well. If you need any advice this is a great site to reach out.

There are local groups in part of one in Birmingham which did meet quarterly but now they have online chats. It’s informative and informal.

I hope you have a great rheumatologist and lung specialist.

Best wishes

Helen x

[momo17]

Hi Jenny

So sorry to hear of your diagnosis. It’s a difficult time.

I was diagnosed with ILD due to systemic sclerosis about 4 years ago n I was petrified. As the years have gone on n I have a few stable lung function tests under my belt that has abated slightly but there’s always the fear. I am on 3g of mycophenolate n 7.5 prednisone. My lungs sit at 63% transfer rate which only sometimes I feel heavy chested n difficultly breathing. I try n keep as mobile as possible n just started reiki n trying meditating

Thank you Helen for your encouraging post. My daughter is 12 now n my main concern is I won’t be around for her but that is good to hear.

Good luck to all.

[GGhere]

Hello Jenny

I have scleroderma and all the other elements that come with systemic sclerosis. I've recently had lung x-rays due to my constant breathless ness. Consultant says my left lung is filling with fluid and I'm awaiting a consultation with the respiratory department. I was told they may be able to drain the fluid. I've recently spent 8 days in hospital having three pints of fluid drained from around my heart which they think was caused by the scleroderma. They thought this would cure the breathlessness but as I say it's in my lung as well now. I was diagnosed about 6 years ago with systemic sclerosis. I hope you manage to keep well and get the help you need. Best wishes.

[Sootie1]

Hi, I was diagnosed 1995, diffusing capacity 60% and lung volume 75% unchanged till now. 5 yrs cyclophosphamide and azathioprine plus steroids, no progression since.

Moved to Spain 16 yrs ago and my life quality improved immensely, also my Raynaud’s symptoms vanished.

Hope that will reassure you. The first five years were unpleasant but I have been on a plateau for so long my Spanish rheumatologist is becoming more and more puzzled.

Wishing you all the best 🌺🌺🌺

[Hidden]

Dear all,

Firstly, thank you so much for all replying.

When I posted I wasn’t sure if anyone would reply.

Secondly, I must explain that I posted, with her full endorsement, on behalf of my beloved mum. My mum was diagnosed with scleroderma 20 years ago following a lung biopsy. She is now 62 years old.

For approximately the last 15 years she has needed an electric wheelchair. The amount of time she can stay up out of bed has gradually reduced due to the extreme fatigue she experiences.

Her scleroderma has been diagnosed in her lungs, nervous system and oesophagus but we probably know it is else where too. She has also been diagnosed with fibromyalgia.

She has been taking steroids for the last 20 years.

Consultants in the past have tried intravenous cyclophosphamide and it worked to some extent although the side effects were not good.

At present, my mum has a high heart rate which the consultants have been trying to get to the bottom of for several months. We believe this is why she experiencing a period of real ill-health. At present she is experiencing a constant feeling of “illness” similar to flu without a temperature:

Profound fatigue

Increased heart rate , usually 125 - 130 following physical activity

Breathlessness from talking, moving etc.

Pain, throughout the body

Coughing when there is any pressure at all placed on the chest & when talking. Difficulty in swallowing

Very poor appetite

Intermittent sharp stabbing pains in different areas of the body, severe at times.

Some dizziness / disorientation

Difficulties with vision - focussing

Has anyone ever experienced similar symptoms. Have you found any medications that have help you?

Thank you.

Jenny