View Full Version : Scleroderma?
03-25-2012, 05:09 PM
Does anyone on here also have scleroderma? I'm looking for some info on it. Talking with my rheum about some things tomorrow when I see her.
03-25-2012, 05:38 PM
My ANA pattern suggests Scleroderma, but I don't have any common symptoms. My rhuemy is "keeping an eye on it". These autoimmune diseases and how the cross over confuse me.
Keep me posted, i'm curious about it.
03-25-2012, 06:00 PM
I feel like I have been having some symptoms of it for awhile and lately I have been getting these red pin prick looking sores that seem to be common with sclero. Also I know my ILD is much more common with sclero than lupus. Its really rare to have ILD with lupus apparently.
03-26-2012, 06:29 AM
I have sclero. I get rashes around my joints.. Mostly elbows and knuckles. I have the esophogaus issues as well. I've also had the same pinpoint red dots. My major thing usually is the joint pain. And the trouble breathing.. Ugh. Do you know what your bloodwork said?
I'm sorry you have scleroderma, but I'm glad to find someone who I can relate to a little bit more.
03-26-2012, 03:54 PM
I haven't been dx'd with it. I think my rheum has thought that I might have it before but never tells me anything. I'm trying to find a new one because mine just makes me mad and does almost nothing for me. What blood tests do you have that show scleroderma activity vs lupus activity? Can they even tell? My rheum told me my visible swelling, the sores in my mouth (that she didn't even look at) and general sick feelings were because I don't exercise enough (probably because my feet are swollen and it hurts to walk!) and because I am apparently depressed which is news to me considering I don't feel depressed at all! She feeds me this crap everytime my blood tests show no signs of inflammation. However, the tests she ran have looked exactly like they do now everytime she has run them for a year (I looked online) and they never show inflammation, even during 2 bad flare ups. I am done with her. I'm sick of paying her to do nothing for me and then having her make me feel like its my fault I don't feel well.
I added a pic of the spots on my lips.
03-27-2012, 06:28 AM
Are those raised/sunken in or just flat?
And I've actually got my first rheum. appt. this Thursday. I hope I like him. My PCP actually dx'd me from the blood tests.. I had high levels of scl-70 (which is very specific to sclero.. Though you can have sclero and not test positive) and anti-RNP levels were high too (I think this one is semi-specfic to overlap syndrome/mixed connective tissue disease). My ana was 1:320 homogeneous/speckled. I don't think I showed anything for inflamation either.
Does the skin on your hands feel tight? or even hard? I think hand and feet swelling is one of the classic early symptoms before the tightening and hardening begins. As much joint pain as I'm usually in, I NEVER have swelling. But this morning, I woke up with swelling everywhere.
Do you have any sort of GERD? Or difficulty swallowing? Do you have raynauds? Those are just a few markers for sclero. I hope this helps!
03-27-2012, 10:53 AM
I have GERD, Raynauds, Obviously lupus lol I also have interstitial lung disease and have had flare ups of vasculitis and myositis in the past year. I recently started having trouble swallowing, my rheum didn't even address this after I went into detail about it. When she did and ENA when I first saw her she ran tests for all antibodies, except sclero ones and Im not sure why. I don't know if I would say they feel tight. Its almost like my hands and face feel really dried out all the time even though they don't really look like it. The sores in my mouth started out looking lumpy and by later in the day they look like that and are flat. How high was your RNP? It doesn't give a range on mine so I dont know if its high or not. I believe it was about 256 (it just said anything over 0 was positive). My ana was 1:2560 when I was diagnosed.
03-27-2012, 01:30 PM
I agree..you should find another doctor who is interested in what is going on with you and who is devoted to getting you better. Not everyone suffers from inflammation with Lupus, so just because the tests for inflammation come back negative doesn't mean that you are not suffering from symptoms of Lupus. My tests for inflammation are NEVER positive..but my rheumy understands this and treats my symptoms pro-actively. Scleroderma is a condition in which the skin gradually tightens, thickens, and becomes hard; thus losing its abilityAbility to stretch. The disease most often affects the hands, face, and feet. However, blood vessels can also be affected which results in restricted blood flow that can damage the your digestive, respiratory, and circulatory systems.
Scleroderma is difficult to diagnose due to the fact that the symptoms of the disease vary greatly between individuals and may often look like other diseases (as does Lupus). The most common symptom is the tightening, hardening, and thickening of the skin on the arms, legs, hands, feet, and face. The skin is affected gradually during the early years of sclerodermaís onset until the thickening stops at which time it can even recede.
There is no one test that can directly identify scleroderma. However, your doctors can test for scleroderma in a few ways. One is testing antibodies in the blood, which may be positive in scleroderma although not diagnostic of the disease. Another test used to identify the earliest signs of scleroderma is capillary microscopy, which involves examining the small blood vessels known as capillaries at the nail fold. While this test is not a definitive indicator of scleroderma, it is helpful in arriving at a diagnosis when combined with other characteristic symptoms.
Other symptoms of scleroderma also resemble those of Lupus are as follows: Gradual tightening and thickening of the skin - Swelling, stiffness, or pain in the fingers, toes, hands, feet, or face -Tingling, numbness, or puffiness - Skin discoloration -Small white bumps forming under the skinís surface -Sensitivity to the cold -Bluish or reddish tint in the hands/feet (Raynaudís syndrome) -Red spots from permanently dilated tiny blood vessels (telangiectasias) on the fingers, palms, face, lips, or tongue -Sores/ulcers on the fingertips, knuckles, or elbows -Weak bones that break easily -Inability to stretch the skin -Itchiness -Weak muscles -Persistent fatigue - Curling of the fingers - Digestive problems such as: -Heartburn - difficulty swallowing/movement of food- Impaired muscles in the intestines -Loss of hand function due to the tightened skin -Shortness of breath -Hair loss -Weight loss -Irregular heartbeat
I hope that this has been helpful to you and that you get an answer as well as appropriate treatment. Best Of Luck
Peace and Blessings
03-27-2012, 02:44 PM
Thank you Saysusie for such a wonderful thread.
As far as my RNP goes, I think it was 160? Mine also showed anything over 0 was high. But, like the ANA titre, I'm almost positive the level doesn't matter.. Just that it is high. I agree with Saysusie, sounds like you need a new rheumy. I'm traveling 2 hours from where I live to have my first appt. We both need someone who is interested in our actual cases and while I'm not a doctor, you have a lot of similar symptoms as me and ruling out sclero is a MUST. It's a super rare disease.. Do you live in or close to a metropolitan area? I live in the middle of west Texas, finding a sclero specialist would take a 5 to 8 hour drive for me. But if you live in some proximity to a university with a teaching hospital, or even some cities, I'm sure you'll be able to find one. I strongly suggest you start doing some research to find him or her!!
Best of luck
03-27-2012, 03:11 PM
I do live right outside of a city. I'm trying to look for a doctor. I feel like while my doctor could be right and that excercise and all that will help, I do not think nothing is going on. One of my main markers of disease activity is my CPK and she hasn't even checked it in awhile. I feel like from my minimal knowledge of MCTD I fit that more than I do just lupus. I know most of the treatment is the same but I want to know if that is what I have and if I need to be doing more for it.
03-29-2012, 01:39 PM
My doc did say that I have MCTD, but she listed Lupus, RA, Sjogren's and Psoriatic Arthritis as my overlaps. I've read that Scleroderma is common with MCTD, but I don't have the tightening, thickening skin. I do have the gastro problems and the Raynaud's, but then again, those seem to come along with lots of AI diseases. Those of us who have overlaps just seem to have such a confusing array of symptoms from so many diseases. I wish my body could make up its mind, already!
I also think that its a good idea for you to seek out a rheumy who will relate to you better as an adult. I think that the one that you have might be still seeing you as a kid. It takes a lot to find a good one, but keep trying.
Let us know how the appointment went.
03-29-2012, 05:03 PM
A lupie I met on facebook did all the work for me! She is great I didn't realized I live sooo close to rheumy with really good reviews online. My mom said to call and ask if they do free consultations because she said a lot of places do. My rheum always makes me feel kind of dumb too when I ask questions about my blood work even when she says it shows nothing. Considering its what I want to do for a living I thought she would be more understanding.
I also wish my body would make up its mind. I kind of want an antibody test for sclero done but at the same time I don't. Lupus I can handle. I don't know if I could handle sclero it seems like its a whole different ball game with some pretty terrible symptoms. My mom said I should just call and see if she can order the test so I don't think about it for a month but I feel like she will say no I don't need it or something. I don't know I feel like I read too much on the internet lol but its not like I'm looking for me to be wrong with me I just want some answers. I don't know if I already said this on this thread but my rheum flat out said that my GI problems aren't caused by my lupus or anything and there is nothing she can do for me. So glad I tell her about embarrassing problems like incontinance just to have her tell me nothing is wrong. Oh and the white spots in my stool that must just be from something I'm eating. Yupp makes sense that nothing is causing all of that..
03-30-2012, 06:38 AM
You NEED to see that rheumy! I'm so glad you made that facebook connection.
Trust me, when my PCP and now rheumy think there is a possibility for sclero.. I was freaked out. My PCP (who must not of known too much about it) literally told me to 'google it'. I scared myself to death for the next 48 hours overflowing my mind with things about sclero. The best thing to do would of been going to the sclero foundation instead lol, where it's more comforting.
PLEASE make sure you request that sclero test. It is scary, and sometimes it seems that sclero is the worst of all the AI diseases, but I don't think that statement can be true. All these diseases vary SO much from person to person. And you need to know if that's what you have because you need to be treated accordingly. Don't let internet scare you. Go on the sclero foundation website instead of just random google searches.
I wish you the best of luck with that rheum!
03-30-2012, 10:31 AM
I have a friend who was diagnosed with only scleroderma, nothing else. She told me that she was in a lot of pain when she was first diagnosed. She was treated with huge doses of steroids and took MTX for a while. Then, it went into remission and stayed that way. She now only takes OTC meds for occasional stiffness, and she's a fitness freak. I always see her biking or jogging with her husband on campus.
Because of Stephanie, I thought that sclero was a really mild AI disease. It goes to show you that everyone is affected differently.
03-31-2012, 08:50 PM
I'm just so tired and sore lately and visibly swollen and no one takes me seriously about it. I blew up at my mom tonight because we went to see Cirque de Soleil and I was just wiped out. Walking to and from the car, up and down the areans steps, walking back out. I took a nap before we went but it didn't help. She made some dumb remark about me not wanting to get up to check on something and I just exploded. Because everyone took my doctors side saying I must not really be that bad off because nothing showed up on my blood work I have been keeping it all to myself most of the week since my appointment because I just kept hearing "I'm tired of hearing about your feet." well its not just my feet the joints in my hands are hurting really bad and now my knees are too. But I must just be over exaggerating. Just like I was last year and then ended up unable to walk for a month or so. Yupp, must just be making it up and I just need more exercise.....
04-02-2012, 06:49 AM
I understand how you feel. I went 10 years before my bloodwork showed anything. You don't understand the relief I had. I hope you find a doctor soon that actually cares for your needs.
04-02-2012, 08:20 AM
Considering everything I have been down in the dumps alot lately but today I at least feel better mentally lol I have an "I can do everything today" mentality, despite the fact I am still pretty sore. I am trying not to push it. I'm going to all my classes, actually have all my homework done for once, and when I get home I'm taking a nap so I can enjoy the Kentucky game tonight! CATS! lol
Its really strange. My hands and feet dont look as swollen as they did. However my joints hurt really bad now, especially in my feet. Its this constant feeling like they need to pop or something but I can't get them too.
04-04-2012, 02:26 PM
I hope that this means that you are coming to the end of a flare.
And HEY, your team won!
04-04-2012, 04:03 PM
Heck yes they did! IT WAS SUCH A GOOD GAME lol and other than missing because of all my testing yesterday morning I have gone to class everyday since last week I think. I feel good about that. I still don't feel good but I don't feel as miserable most of the time. I got an 85 on my chem test last week and a 95 and my chem lab materials from the past two weeks. It made me feel a lot better. The sores in my mouth have been gone for days now too. Feet and hands are still swollen but not as bad, my joints still hurt pretty bad though. My muscles feel all weak too. I'm just glad to be back at a functioning level for right now. The semester is almost over I need to rock everything from now until the end of this month and then I have a little break before summer classes start.
04-04-2012, 09:48 PM
Good for you, girl!
Here's something that you will be interested in. My daughter Heather is finishing her neurobiology post-doc this summer. She decided to try something different and applied for a position in science policy in Washington, D.C. She got it! Starting next September, she will be working with the government in decisions about science funding in this country.
Hopefully, she can have some influence in getting much-needed funding for medical research and for pure science research.
04-05-2012, 08:53 PM
I hope she has more luck than people apparently have had in the past lol its definately needed all around