Could someone please describe the typical progression of scleroderma?

I am actually not diagnosed yet but the doctor does think I am developing an autoimmune disorder. She thinks scleroderma is most likely but Lupus is also a possiblility.

I was "weakly positive" for the ANA test. And she examined my finger tips (Nailfold Capillaroscopy) and said it looked good. But the issues and symptoms I am having seem to have her thinking I might be starting to develop it.

Swelling fingers, weird hard spots under the skin, and hypersensativity of the fingertips are the symptoms that got me to the Dr.
My other symptoms might be just aging (joint pain and such) I am 45 yrs old.

So how fast does it progress? I know it depends on what kind, but I was stlll looking at a time frame. Am I probably 2 yrs away from the twisted hands. Or could it be 10 or 15 years. Is it something that progresses in "jerks" like long periods of no progression, then "boom" or is the progressions more steady and predictable?

I am just wanting to have some idea of what the years to come will be like.

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Unfortunately, there's no such thing as a typical progression with Scleroderma. Each case is different. Best to consult with an experienced doctor who treats a lot of cases. He/she will be able to give you realistic outcomes/expectations.

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But how wide is the range? Do some people progress from barely any issues to the major issues in a 3 - 5 years (or some other range that is somewhat predictible) or can it take 2 years in some people and 20 in others?

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Being medically proactive and online research s is good but you are getting ahead of yourself and have unwarranted worry. You may or not be developing an autoimmune condition which may or may not be scleroderma yet you are already focused on a timeline and twisted hands. take a step back.

I don't think anyone here that has scleroderma or a doctor who is an expert with it can give define a typical progression. There are many types of scleroderma. Each type can take a very individual course.

Instead of focusing on a timeline, it might help put your mind at ease to know that while scleroderma may be an incurable disease, there are treatments that stop and reverse symptoms.

The best thing you can do is to stop worrying. Your symptoms are vague and illusive so pay attention, establish a good relationship with a doctor, keep good records and eat well and stay active & fit.

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I wish I could but I can't. I doubt anyone can. The disease acts differently for each patient.

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I'm new to this group but not to SD. I think everyone would probably tell you that it's a "designer disease" and what happens with one will be completely different from what happens to another. I've had it (at least known I had it) for 17 years and when I was diagnosed through labwork the average life expectancy was 16 - 18 years depending on what type you had. I'm sure that number has changed drastically for the better with research and the awareness. I've lost half of my pinkie on my right hand, both big toes and the little toe on my left foot along with about an inch of the joint due to raynaud's. So far that's my worst symptom, other than pain and fatigue, so I feel blessed. Good luck to you...patti

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Smartkat-I totally understand where you are at with your questions and postings. I'm at the same place myself, scared to be diagnosed, scared not to be. The uncertainty of it all scares me more than having it I think.
Thank you so much LaurenM. I was having a horribe night researching AP vs. cellecpt & IVIG and here I am officially undiagnosed and still on my first week of Plaquenil. Boy do I need to take a step back. Thinking my heartburn is "for sure" a sign I'm developing CREST and not that I just had a spicy dinner! You are an inspiration to me and just what I needed.
And even though I say this here, ask my husband and he'll say I should practice what I preach! I am obsessed with learning about sclero treatments and I haven't even finished my first treatment. To those that have sclero-you are amazing to do what you do and if I do have it/develop it-I can only hope to be as strong as you all.

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Scleroderma is a rebel disease if you ask me. It doesnt play by anyones rules. I first developed a small patch of darkened skin on my right pelvis bone when I was about 4 or 5. My mom took me into the dr. and they took biopsies and really, I dont remember what the outcome was since that was about 20 years ago and I dont think alot of doctors knew what they know now about it, then. It spread into what I used to call "the state of California" because thats what it looked like, but it wasnt very big, maybe a bit smaller than the size of my hand, for most of my childhood. I remember being 12 and having it spread a bit more, but never coming up from that spot, but it went down some, but not past my knee. I remember that was probably the last time I could wear shorts without anyone seeing it. When I was 15, a little less than a year after my mom passed away, the amount of stress I was under was unreal, and I remember sitting in my room with my boyfriend, and I started crying because it jumped down to my right foot, skipping everything inbetween. It was a small patch, but I knew it was there, even though my boyfriend said it was hardly noticable. As I went through high school, I cant really remember it getting so bad, it wasnt until I was around 20/21 that it has started progressing alot quicker. The state of California is long gone, and it is now moved up the right side of my torso and its coming around to my back. It has progressed the most around my right thigh and its down onto my calf now. Bits and pieces of it are tightened while others are not. I believe I am lucky that it went down instead of up, because it easier for me to hide it that way. My doctor took me off meds late last year and now has me on topicals which I dont think work. I guess it has slowed down a bit, but really, not that much. I just think back to the time when it didnt do anything at all. I wish I would have appreciated my body more then. I can feel it spreading and the skin tightening. bI never used to feel it.

Hope that answers some of your questions, but really, like everyone else said, and the worst part of this condition in my opinion, is that its different with each person, and there really isnt anything predictable about it.

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i was officially diagnosed 4 years again with SSc. My symptoms were Raynauds and then shortness of breath. I have very swollen fingers, sensitivty and some small ulceration on finger tips. I have abnormal CT and Echo. My ANA was 2400. My SL-70 was elevated. I went to a very well known interstitial lung clinic after my lung biopsy but they missed the scleroderma and said it was IPF and I have 3-5 yrs. With the proper diagnosis and physicians who specialize in SSc, I have been able to continue working and maintain a happy and positive life. I am on O2 24/7 but I can still function and my brain works and my atttitude is good. I currently am working with my O2 company to try out different methods of O2 management for mobiility. I was a very active and strong woman and this is my biggest challange. My daughters have stared an annual fund raiser in Chicago to raise funds for research. There are drugs that can help even though they are not scleroderma drugs" Check out www.chicagofoodfight.com. I believe it is most helpful to have other Scleroderma friends. We are also on facebook.

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I was diagnosed in 1988 with Morphea. I had hardening of the skin, discoloration, atrophy, etc. It spread to three other places through 2000. I never had any problems. No symptoms other than "this thing on my skin".

In 2000-2004 morphea lesions spread to various parts of the body, again no major issues.

June 2004, woke up & couldn't walk across the floor. So 16 years after the initial diagnosis, it changed my life. I now life with chronic pain, swelling, stiffness. My hands are tightening & fingers are curling slightly. Low Vit. D, B-12, Iron. Chronic (CHRONIC) fatigue. Morphea lesions on almost every limb, trunk, & now forehead.

It's totally different for everyone.

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Thanks for the stories. I am gathering that it isn't uncommon for it to proceed slowly for many years before getting bad. Knowing this will help me live in the now instead of worrying about what will happen in the future.

Don't trouble trouble until trouble troubles you.

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You sound like me a year ago. Scared to death asking everyone on this site, internet and doctors the progression.
Everyone is right. Step back and make sure of what you have. Go to a specialist on what you have!!! Don't play around with amatuers. Ask on this site what SS doctor is in your state.
This is a designer disease and everyone is soooo different in how, when and where it hits, how hard it hits, what medications are taken and progression. The bestest book in the world is the Scleroderma Book by Maureen D Mayes, M.D. Information will make you feel more enpowered.

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Hi Smartcat, I wished i and every one knew what is in the future for us. How the progression of this disease will "surprise" show-up in another place, or upper and lower GI tract problem's will start up, (HOPEFULLY NEVER) This disease is a "monster" But, this is only my opinion, I live everyday with a smile on my face, all because, "I WOKE FOR ANOTHER DAY!!!" I do not know what you are experiencing for symptom's but, stay with your head up high, and also, Read, Read, Read, as much as you can, no one ever over read's, The more education of this disease, the more you won't get upset, or freak over what the change you experience is. If you read, than you may be able to go to your Dr.'s and tell them, EX: well i have felt this here, and again Friday, this there. Dr., do you think i may be experiencing Esophagiel problem's etc... I am 50 year's young. My Rheamy had put me on a drug called, "Cytoxan" I.V. drip for a year, once a month, yes it did rot, but it's over again, i feel my "Systemic Sclerosis" My SD is now very much in my lung's also, i have oxygen 24/7 4 liter's. I never thought this would ever happen, but i took it with a grain of salt, of coarse i'm scared, along with probably, thousand's of other SD sufferer's also. You need to educate yourself, but not worry when you feel a "PING" HERE, AND A "DING" THERE AT LEAST WITH THE EDUCATION YOU DO GET INTO YOUR BRAIN, will make you less scared if you read up on what you feel right now. Do anything you can do, but rest when tired, and if you feel like doing something strenuious SP??) lol I really hope i inspired you in ANY WAY! We are all sister's, and a few brother's, lol Let's not LET this monster consume our lives, and participation in the thing's we can do. You stay safe, every morning, thank God you are on this earth, and take care, Katrina

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