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Anyone have any experiences with Scleroderma?

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wheredoigo posted 7/8/2014 11:31 AM

In 2010 I participated in the Breast Cancer 3-Day in support of my mom. When I returned from the walk, I could tell something was different with my body than when I had walked the first time in 2008. The symptoms included being extremely nauseous and fatigued. I went in to my practitioner and had an CT scan of my abdomen and they found nothing. The doctor basically shrugged it off and told me I was fine. A month later I went to my OBGYN. She was new physician and I knew she'd listen to my concerns. I explained to her that I've had several conditions over the years that lead me to believe I have an autoimmune disease. Reynaud's (where I loose blood in my fingers if they get cold) was on the list as well as asthma and having a low immune system and the amount of time it takes for my body to recover from a cold or infection.

Thankfully, she listened and ordered a few blood tests that help target several auto-immune tests. I was negative for lupus, but an anti-nuclear test (SSrA and ssRB) showed one result that pointed towards scleroderma. Based on my test results at the time through Googling results, it pointed more towards the systematic kind, more specifically the limited with CREST.

I followed up with my physician, but he seemed to think that I needed to wait a bit more since most of the symptoms are far and few between and a diagnosis could change my healthcare coverage and premiums. He said it would be best to wait and see if the problem continues.

Today happens to be one of those days. Yesterday was one too. My H tells me not to worry about any of it and that I'm too young, but my instinct tells me otherwise. Any advice from anyone who has been through this with scleroderma or something similar?

tushnurse posted 7/8/2014 11:54 AM

OMG Get a NEW Dr NOW!!!!
You need a Rheumatologist, and a good one. They are fantastic at managing autoimmune diseases. They know how to interpret all those labs, and say with all of this it most likely means x y or z.

The possibility of scleroderma in someone your age left untreated is scary. If you are having symptoms, and positive labs, you need to be getting treatment.
DO NOT concern yourself with premiums/deductibles at this point.

I personally have a seronegative (meaning my labs look almost normal) arthritis, and my normal PCP's have always given me the you are crazy face, and blown me off. One wanted to tell me I had fibromyalgia. I about blew a gasket and fired her on the spot. Sorry my joints are visibly changing, and I can see it. This is NOT fibro-. Anyway I worked with a new PCP who got it, and monitored my CRP, and Sed rate the second they turned abnormal I saw a new Rheumatologist. She is awesome. We do 6 month films of my hands, I am on low dose meds, and the pain is tolerable.

You have to find a Dr that is comfortable with interpreting the labs, and treating the disease at any level. Most PCP's are not adept at this from my personal and professional experience. There is nothing worse than leaving your Dr knowing something is wrong, and feeling like they don't believe you, or even crazy.

(((and strength))))

purplejacket4 posted 7/8/2014 13:03 PM

Autoimmune diseases exist on a continuum with varying symptoms and test results. I'd agree with a rheum referral. My mom was first diagnosed with fibromyalgia then scleroderma with Crest syndrome then sjogrens then mixed tissue connective disorder and finally rheumatoid arthritis. She's had every diagnosis but lupus I think. Basically her immune system is attacking itself. Now most of these cause disabling symptoms but usually not death. We do though have great drugs that can treat them now. The first line used to be steroids or NSAIDS. We now recommend plaquenil, methotrexate and immunidulators like imran, remicade, etc.

Waiting4Daylite posted 7/8/2014 13:15 PM

I have scleroderma. I was diagnosed in 2009 but nothing was done until last year when I got a new doctor.

The rheumatologist I have now is awesome. He is so proactive in my care. I have also seen a pulmonary doctor as well since scleroderma can affect the lungs. It can also affect your heart. I don't want to scare you but ask for a lung function test and echo of the heart. I had that done and am currently waiting for the results.

Right now I am doing okay at 52, I do have the thickening of the skin on my hands along with eczema (which I've had my whole life), and arthritis, which is manageable right now.

Keep vocal with your doctor about your treatment. Good luck.

wheredoigo posted 7/8/2014 14:03 PM

Thank you for your replies.

Tushnurse, sometimes you just need to hear it aloud, so thanks!

I did some research and found there is a rheumatogist office at the U of M that specializes in scleroderma. Hopefully they will give me an "in" even though I haven't been officially diagnosed. I hear that can be the hardest part…finding someone to listen to you. It's already pretty scary thinking about having it, must less having to fight with someone to believe you.

purplejacket, my mom has psoriatic arthritis and is on methotrexate and has taken remicade. Any chance that the what she has could be linked with scleroderma as a genetic "gift" to me? Always something to think about..

Thank you for sharing your experience with me. What were some of your symptoms that lead you to your diagnosis? Looking back, do you see other symptoms that you overlooked early on?

Waiting4Daylite posted 7/8/2014 15:14 PM

In my case no. Years ago I had a major spinal infection which led to surgery and leg paralysis. It was my neurologist who discovered the scleroderma. Actually my blood work flagged Lupus but after more tests were done it was diagnosed as scleroderma. That was back in 2009, my spinal infection was in 2005.

I did see a rheumatologist but he only gave me something for my stiff fingers. Nothing was done after that and my primary didn't know shit from apple butter about scleroderma so he wasn't concerned.

It was when I got a new primary doctor that he sent me to all the other doctors. I LOVE HIM for that. My new rheumatologist is determined to find anything and everything that is wrong and help me with it.

I also got information from the Scleroderma Foundation. They said that even though both men and women get it, it is found more in women. Also, many go undiagnosed for years because many doctors don't equate the symptoms at first. But once you are diagnosed start treatment immediately. Because my original doctor didn't my symptoms have progressed. Right now it is mostly on my hands and knuckles. When I bend my fingers my skin cracks and bleeds.

I also have eczema on top of all this shit so I am being treated for that too. You may also want to see a dermatologist who knows about scleroderma. You'd be surprised at how many don't.

Also, please keep being checked for arthritis. I have it in my knees, hips, hands/fingers, shoulders, and unfortunately in my spine. It sucks. They discovered three new "bulges" on my spine which may be the arthritis spreading.

You are still young so keep up with any treatment you receive.

tushnurse posted 7/8/2014 15:18 PM

Ok so it wasn't directed at me, but I'm gonna take a shot at answering your genetic component.

Autoimmune diseases have not been marked as Genetic. However.....You knew there was one coming.....Many autoimmune diseases run in families. Meaning it's very common to see a whole family of people with Crohn's and Ulcerative Colitis, or another with arthritic diseases, and another full of people with psoriasis. The science behind it is there is something in our make up that turns that switch on, just like allergies, which is how I describe what autoimmune diseases are, and allergy to yourself. Not good. So we used to just treat the symptoms like PJ said. But now with the biologic meds it's acutally working to turn the switch off again.

You will also find that there are things that make it worse, and things that make it better, like stress/anxiety/poor sleep/eating badly - will all make it worse. Rest, eating properly, good sleep, low anxiety and stress all make symptoms go away. Another thing that I have found makes a huge difference (and I didn't buy it for a long time, but then I tried it) Vitamin D. If it's low, and it probably is, can make symptoms more pronounced. I am an outside kind of girl, and was shocked when I found out I was low low low. So I am on Rx strength, once a week, and tan once a week now. It helps with the joint pain, and makes me happy. I'm still on the low side of normal.

So eating right, taking folic acid, and vitamin D, and seeing the right specialist would be the things you need to do right now. Eliminate as much processed foods as possible (there is increasing evidence that this may be the trigger that flips the switch). I even gave up my beloved Diet Coke.

Waiting4Daylite posted 7/8/2014 15:29 PM

Tushnurse I agree with you especially about the vitamin D. I, too, am on the Rx once a week pill. My problem is that I need to get out in the sun but my fair and extremely sensitive skin hates it.

Diet is also very important. That's what I'm working on.

purplejacket4 posted 7/8/2014 18:07 PM

Autoimmune diseases aren't generic in an autosomal dominant or recessive manner like sickle cell disease or cystic fibrosis but they do "run in families" especially the female members. A woman's immune system is a bit different than a mans (which is why we can carry a baby that is 50% genetically not us and the immune system doesn't attack it). This makes women more likely to have most autoimmune diseases.

wheredoigo posted 7/8/2014 23:00 PM

Wow. Thank you for all of the invaluable information. It never ceases to amaze me how amazing and insightful the members are here at SI. You have no idea how much these posts today mean to me. I've been so scared to ask because in the past I've felt it's better not to know. Funny thing is, the more I know about it, the better I feel.

TN, I have noticed a most things that you mentioned that coincide with symptoms. I sat there nodding in agreement as I read your response. One thing I've noticed with my personal experience that you didn't mention but resonated with me from PJ's response is the female reproductive aspect that ties into your immune system. Makes total sense. This may be TMI, (but I guess not really in your profession though) I had just mentioned to my BH today that I notice it most the week before my period starts. It lead me to wonder how hormones effect all of this. I will keep looking I to it.

W4Dl, thank you for the tips on what to look for and notice. I've already had some arthritic issues in my hands. I'd always chalked it up to playing the piano and popping my knuckles when I was younger, but sounds like it could maybe be related? None the less, the echo and lung capacity test will be on the list. If you feel up to sharing more, please feel free to PM me how your test goes. Id love to be an ear or a shoulder should you need it. :)

Again, thank you, thank you, thank you.

[This message edited by wheredoigo at 11:01 PM, July 8th (Tuesday)]

norabird posted 7/9/2014 10:53 AM

I have a friend who lost her mother to this, and she is very involved with the Scleroderma Foundation--the website is here, if you haven't checked it out yet:

Good luck!

Waiting4Daylite posted 7/9/2014 19:27 PM

Norabird, thanks for posting the website, I forgot to.

Wheredoigo, I will certainly PM you with my results and any and all info I get.

wheredoigo posted 7/9/2014 20:18 PM

Thank you!

Update: I've already heard back from the U of M AND they've already secured me an appointment as early as next month! What could be even better than that? The doctor my appointment is with happens to head up the international scleroderma network. I hope this will help me find the answers that I've been pushed away from for so long. I keep hearing of so many people that died so young from complications from it. As much as I hope that the original test results are wrong, if it turns out that they are verified, hopefully I can help become an advocate and voice for others who are young and being turned away by their own PCPs.

I have a friend whose family is the first study on Alzheimer's and the way it is evolving throughout their family. Every single male in their family has passed from it. My friend learned just a few years back that, not only does he have it, but that his sister has the gene and is the first female in his family to have it.

I'm also in the same boat for cancer; specifically breast cancer. In 1995, my mother was diagnosed at 42 with breast cancer. Her maternal aunt passed from it and in 2010 her sister was diagnosed. Next step is to be tested for the BRACAs.

I know you both mention that you don't think genetics play a role in it, but I have a sneaky suspicion that autoimmune inefficiencies are changing to a more dominant/recessive manner. I just can't be quite convinced that it's just one way. Just like everything else we are subjected to, I believe that genetical evolving is just part of how our bodies will always work...of course this is what I find is so beautiful about medical research. There will always be something new to discover (in other words, maybe I should convince my youngest to pursue this field of study; total job security! )

Waiting4Daylite posted 7/9/2014 21:47 PM

I'm so glad you have an appointment. Don't be scared to ask questions. If you are not sure what to ask check the scleroderma website.

Definitely ask about the lung test and echo. They aren't that bad at all.

tushnurse posted 7/10/2014 08:21 AM

Awesome Where - You have become educated, and have a much better understanding of what you are dealing with in just a few days. Now an apt with a Dr that leads the field in it? That is just awesome. Kinda like a scleroderma rock star.

Please update us after your appt. I am very interested in hearing what he has to say, and does.

I agree biomedical research is freaking awesome. My oldest niece is a Biomedical Engineering Major. She has been involved in research since day 1 her freshman year due to getting into an internship. Anyhooo---That is great news for you.

wheredoigo posted 9/10/2014 13:38 PM


It's been two months since my post here about pulling my head out of the dirt and finally seeing a specialist to confirm tests results that pointed to Scleroderma.

A few weeks ago I had my appointment at the U of M with one of the leading doctors in the ISN (International Scleroderma Network).

I want to post a big thank you to you guys that responded. The support may of seemed small at the time, but it helped give me that extra push I needed to move forward.

According to the doctor, he was able to confirm that I do have the CREST version. I am considered a low risk at the moment because my current symptoms see under control. (By that I mean they are not getting any worse and do not keep me in constant pain.) That being said, he did have a EKG done in office to give me a good base line in the event that I continue to have heart arrhythmia and has recommended that I come back every 6 months for a check up. My next appointment will be in February in which they will have me complete a lung capacity test an hour prior to meeting with him.

In the meantime, he had some really intriguing information to share, in which I thought I'd pass along, as well as ask if anyone else has had any experience with a similar recommendation.

He explained to me that throughout the past ten years they have studied that there are two types of immune systems within the body. One is your traditional immune system and then there is your adaptive immune. Both speak to each other. Through several studies they are beginning to see a co-relation in a change of outcome with patients that begin to take Plaquenil after an early or some-what middle-stage diagnosis.

He warned me that, while plaquenil doesn't have the best reputation, that it was was beccause earlier in it's existence, Doctors misunderstood and misused the drug. It's mostly known for it's terrible side effects when used for malaria patients. During this time, they were giving 8 to 10 times the dosage to patients which caused the body to overdose, increasing liver damage and causing blindness. Sounds scary, but I can see how any medicine you take in a larger amount than what your body can filter can obviously cause massive amounts of damage. It's a possibility with any drug.

A typical dose for myself to help treat scleroderma symptoms would be pretty small and has shown to basically block receptors to the adaptive immune system, thus decreasing or completely stopping all scleroderma symptoms. There is, of course, the possibilities with any drug, that it could not work for me, however, my choice now is to weigh out these options.

So, here I am now, trying to figure out what is best for me. Have any of you had an experience with plaquenil? While I know everyone is different, I still would be interested to hear your story.

Thank you again. -WDig

[This message edited by wheredoigo at 1:39 PM, September 10th (Wednesday)]

purplejacket4 posted 9/10/2014 14:05 PM

For milder sx plaquenil has worked well for some of my patients. For my mom it didn't do much so she's on methotrexate which has been a Godsend.

brooke4 posted 9/10/2014 14:14 PM

My brother had very good results with it for RA. He was given it when he was diagnosed about three years ago and hasn't had a recurrence yet.

On the topic of autoimmune diseases, this article was really interesting (and optimistic)

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