I have just been diagnosed with Scleroderma at an initial stage. Reading about it, I understand that one of the complication is lung involvement. I am worried I might have it. I read that the main sympton is breathlessness, but how can you measure it? I mean, when i go up the stairs I might get a bit panting after 2 or 3 sets of ten steps. I used to run and this winrer I stopped. Yesterday i resumed and struggled to run for 3 mins uphill, but I managed and did it twice...so I don't know if I am showing signs of ILD or whatever. What are people's experience of this? Thank you
Written by
itexpat
To view profiles and participate in discussions please or .
Hi there - sorry you have this recent diagnosis. However it’s a hugely variable disease and it is in fact only a minority who go on to develop Pulmonary Hypertension so I wouldn’t worry too much about this for now. I was fully diagnosed in 2023 having had an overlap CTD diagnosis for years and I still don’t have any lung or heart involvement. Most of my scleroderma issues are severe GI from mouth to tail, now including a stoma. Some don’t even have much GI involvement beyond reflux and their main symptom is Raynaud’s. The way and speed in which it evolves is often related to which antibody you carry. So the main thing to focus on is that you are diagnosed and hopefully will start treatments and have tests annually for your heart and lungs. I hope this allays some of your fears at least.
Hi, yes it is reassuring to read this: thank you! I also have some GI involvement but it is quite minor so far. However from the first blood test it looks like I have the dreadful Scl-70, which, I think, is the bad guy in terms of nasty development? I hope you are coping well, take care
Itisn’t the “bad guy” of the pack exactly but it can be one of them. I have a much rarer “bad guy” called Fibrillarin/ U3 RNP - which is very much associated with poorer outlook, including severe GI. However I feel quite positive now and so far the treatments I’m on seem to have held it at bay effectively. I think for some of us the main risks are more associated with the treatments than the disease itself so that’s what you and your rheumatologist need to focus on. Also it’s worth knowing that Scl-70 at lower titre can often be a false positive so this is something to bear in mind before you google too much!
Yes, you are right. I do tend to google and it is worse now with ChatGPT. Thanks for this info, though. You really are very knowledgable. Nice to hear your treatments are working well. Take care
Yes I know this but I didn’t want to introduce ILD into the speculation. I too often struggle going up stairs but so far I have neither. Tests are required asap but just because we have Systemic Sclerosis it doesn’t mean that we will necessarily get lung or heart involvement. It’s scary enough being newly diagnosed without worrying about what symptoms might mean. They are getting a CT scan soon so will find out but meanwhile worrying about what may or may not happen is unhelpful. If people post about early lower GI involvement I don’t tell them that they will probably end up with a stoma like I have. As I said it’s a hugely variable disease for each of us. I was trying to reassure rather than alarm Itexpat since they are newly diagnosed.
Welcome to the club! I’ve been diagnosed for 2.5 years now and also carry the scl70 antibody at a very high level. This does mean that you are at a higher risk of organ involvement but it doesn’t mean you will necessarily get it. I am classed as having limited SSc due to my skin involvement (mainly below the elbows/ankles and affecting my hands most) but the scl70 indicates the diffuse variety on paper.
This is easier said than done but try not to google everything and make yourself sick with worry. Find yourself a good rheumatologist who will order some baseline tests for you, namely lung function, CT and and echocardiogram to see if the SSc has affected you yet. As OldTed said, they’ll then repeat these tests annually.
They will then prescribe you treatment based on findings. I’ve been on mycophenolate for 6 months now and it has reversed much of the skin thickening/tightness in most places other than my fingers. It also slows/halts the progression of ILD.
Through this group, I discovered the scleroderma clinic at the Royal Free in London and it’s been a game changer for me. If you are in a position to access them, or ask for shared care through your local hospital, then I highly recommend this approach.
It’s a bit of a minefield and hard not to think and feel the worst but stay off Google! There’s so much knowledge within this group so ask all the questions.
Thank you for the advice! I was going togo private to the Royal Free Hospital but then I got the letter from my local NHS that they would see me where I live. So I was seen by prof.Herrick, who I think is a specialist in Scleroderma. It is all very recent for me, so this forum is really good as it makes me feel much less alone, all the very best
Excellent points to help our new friend itexpat, and in most key respects my wife’s experience matches yours. Very pleased after a year of trying to finally get on the Royal Free list and Prof Denton’s overall care.
I feel a bit the same as you Itexpat - diagnosed 4 years ago but only very slight lung impact so far. My experience is that I can definitely improve my lung function tests that I have annually if I do lots of exercise and deep breathing exercises each day. (And have the tests worsen in years that I’ve not been able to do the exercise due to caring for parents). So my advice is to keep working hard at hanging on to what you’ve got - and even improving it.
I KEEP restarting Couch to 5k as muscle weakness means I tend to injure my hamstring and performis. This year I’m doing it very slowly and doing only 1-2 runs a week. Plus trying to walk on average 4 miles a day. So make sure you do it within your capabilities and build back slowly.
Everyone is different but I’ve found that doing lots of stretching, walking, a bit of running and muscle building exercises, plus eating very low ultra processed food and a diet for low inflammation, and taking all the supplements the hospital recommends / is all helping me keep a lid on the progression.
Hi LadyTrundle, I can really relate to your experience. I am also going back and forth (more back recently) on the Couch25ks app. yesterday I did week 3 twice but struggled. I also try to keep exercising but I work full time so it is not easy to keep it up especially in the winter. I am also waiting for the tests to assess the lungs. Good luck with your exercise programme. and with everything
I was diagnosed in 2019 with Scleroderma. But then went on to be diagnosed with pulmonary hypertension and ILD. But I was out of breath walking up hills and going up steps. If you mention to your rheumatologist about your breathlessness then they should refer you to a heart and lung consultant to have some tests done, that way they can rule out any involvement. I hope you get some answers.
Hi there, good advice from the others, my next lung function appointment arrived yesterday for 2 weeks time. Diagnosed over 30 year's , limited with overlap , gut problems, walking, mouth and hand problems, get a bit breathless up hills and stairs but I am 86 tomorrow. Went to Japan in November and returned from a cruise on Thursday, I do Pilates every week. I am sure exercising as much as possible and being positive helps support our meds. But don't overdo it, the dreaded FATIGUE can be a real problem. Take care
I dont want to alarm you but I would get pulmonary function tests done ASAP. I was diagnosed about three years ago and since then this disease has ravaged my lungs. So much so that my medical team are actively working on getting me placed on a lung transplant list. At first it was minor breathlessness but it evolved quite rapidly and I am now on oxygen when doing any physical tasks. ILD is a very serious condition so act now.
I'm on Nintedinab now which is very hard to tolerate but is showing some signs of slowing progress but it cannot reverse the damage done.
Hello, Deiseboy, I am sorry to hear this. I hope the medication will continue to help you. I have a high resolution Ct scan scheduled the next week. Would that be a good test to understand what the situation is in my lungs? all the best
It's certainly a challenge for you coming to terms with such a disease, understanding exactly what it is, how serious is it, will it get worse, and what can be done. I've been there too - ha!My understanding is that internal organ involvement is most likely with 'diffuse' systemic sclerosis (SSc).
I am affected with the diffuse SSc and with lung involvement, Reynaud',s and other stuff!
I began noticing symptoms for about two years before a diagnosis! I considered the Reynaud's to be "just poor circulation" - to my cost, in hindsight.
I experienced heart racing and palpitations.
Over the two years I visited the doctors periodically, having ECG tests etc. With nothing showing up.
Then began noticing a loss of strength, energy, stamina however it might be described.
Being a club cyclist I used to ride weekly with two groups, one was a longish and for me fairly quick ride, challenging and I could just keep up!
The other a little slower and that I'd usually ride quite comfortably.
Over a period of time I began being left behind when riding the quick group. Thinking I was just a bit say temporarily off the pace I stopped riding with the group until getting back up to speed.
Well I never did get back up to speed!
Furthermore I began finding difficulty to keep up with the slower group.
I developed a cough - initially not serious but wouldn't go away! Eventually the doctor organised a chest x-ray, the x-ray report described lung scarring. A chest CT scan showed more detail, measured the degree of scarring, bronchiectasis, etc.
Referral to a respiratory specialist suspected my interstitial lung disease was caused by SSc.
Sorry for going on a bit...
Anyway what I'm getting towards is one needs to compare - what could I do a year ago compared with today. Obviously taking a little slowing due to aging.
You might use your running as a method of referencing your physical levels. My cycling comparisons proved to be accurate and more precise than me just saying "Oh I'm getting a bit out of breath and tired".
Monitoring one's performance comparing like for like will provide a more measured appraisal.
Hope this helps - keep running, staying fit will also help you going forward in more ways than one.
Thanks for sharing all this, Rescue5. That is what actually worries me: I never struggled so much with running so little...It was better a year ago and even better 2years ago. So, Idon't know. I have a High Resolution scan next week: should that give me answers? Thanks
Yes the CT should show how far the fibrosis has progressed. Hopefully not a lot. Microphenolate does very little to slow fibrosis I believe, this per my Rheumatology consultant, so don't rely on that. I have been on that for 3 years and it's done absolutely nothing to help my lung function. Although it probably is helping with other problems, who knows.
hi my husband (interestingly also a runner) and super fit prior to Aug 24 was diagnosed with mixed connective tissues disease in Dec ‘24 most of his organs have been affected, also now diagnosed with a thoracic aneurysm.
The worst symptoms continue to be joint pain, swelling, grottons papules on hands (very swollen painful hands with thick red deposits on them-has to wear gloves as if hits his hands, he’s in agony) and shortness of breath.
Husband can walk on the flat for several miles (though knees and ankles swell) but walking up just one flight of stairs in house makes him breathless. He tries every week to run and has just managed a mile with several stops but was extremely breathless when he got home.
He is currently on hydroxychloroquine and mycophenolate.
Tbh we are totally confused on wether he has overlap conditions too and we find the whole auto immune disease very overwhelming and a nightmare to fully understand
The physician has now decided to do a lung biopsy as there are some changes there (a consolidation) which can’t be diagnosed-negative CT and PET scan and bronchial wash.
I don’t know if this is ILD or infection
Maybe you need chest CT/PET scan to try to understand what’s going on in your lungs? Good luck with your journey
Hi Jrob14, I am very sorry that your husband is going through all this. I hope they will soon get to a clear diagnosis so that they can help him more effectively. I also think these diseases are very difficult to fully understand and assess, so I guess we just have to carry on with the tests and hope we'll soon get to a full understanding of what is going on. All the best wishes
Hi. I was diagnosed with Systemic scerosis (scleoderma) last year. Lung tests ordered by my rheumatologist at my first consultation in July showed I had interstitial lung disease. I was unaware of being breathless on exercise, although I did burp a lot! My rheumatologist started me on heavy-duty meds at the end of September last year. At my subsequent joint consultant meeting (lungs, rheumatology) in January I was told there had already been an improvement and they had caught the ILD early enough to prevent it becoming significantly worse. The docs said that if you tackle the ILD at the inflammation stage (before it has gone on to develop scarring) it can generally. be viewed as a background condition that needs to be checked once a year. The point is that it was important to start the meds while the ILD was at the inflammation stage before any scarring had developed, as that would be irreversible.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How symmetrical is your skin involvement?
Pulmonary pressure no symptons excellent exercise capacity?
TOE ULCER?
You Won't Believe This...My Dog has an autoimmune illness...
Restless legs?
