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Angelique

Newly diagnosed limited scleroderma

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Hello,

I'm new to your site and done numerous searches to become more educated about scleroderma. 

 

Being newly diagnosed after nearly a year of discomfort, pain, several diagnoses and switching Rheumatologists here I am. 

 

Yes, i do have a few questions. My history is I'm a type 2 diabetic under control. I've been on prednisone on and off for nearly a year. I developed hyperpigmentation over 90% of my body. 

 

My current Rheumatologist said the hyperpigmentation on my hands is typical of scleroderma, but the rest of my body she is clueless why? I also developed Raynauds 3 months into this process. Presently I'm on 2.5 prednisone daily and I just started Cellcept 1000 mg daily. 

 

My questions: the Rheumatologist told me that I don't have swelling of my fingers, it's skin tightness from scleroderma. Yet I can't get my rings off like I did before this happened. So have any of you had swelling of your extremities ie hands and toes? I've also had bad muscle pain in my thighs and calves which seems to have subsided in the last month. Is this typical of scleroderma?

 

My Rheumatologist is sending me for an ultrasound of my hands, anyone know why? Let me add that the doctor is new to me. Thus I didn't ask as many questions as I should have, partly because I was trying to absorb all the information she was telling me. She had resident in with her, so she was explaining to him her thoughts about my condition. She mentioned Crest etc. 

 

I would appreciate anything you can share. 

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Hello,

 

Welcome to the forums. I'm sorry you are experiencing so many symptoms that are hard to explain. The nature of any autoimmune disease can vary so much from person to person. First of all it's good you are seeing a Rheumatologist. Often times, it becomes test after test to rule out different causes, and more often than not, we don't get solid answers. Easier said than done, but try to go with the flow, and let your doctor work through the process. It can actually take years to come to the proper diagnosis, if any at all. I know that's not encouraging, but it's the. nature of the beast.

 

Are you on Plaquenil? I am, and it has caused the pigmentation problem you mention. I was told its from that. I'm very mottled. I was also told if I went off it, it would go away, but that's. never gonna happen. LOL

 

On the swelling versus tightness, the skin gets thicker so that would account for your rings not fitting. I have had mine sized a few times, and actually had a new band put on the opens and closes and is adjustable. On the ultrasound, he/she could be looking at bone structure, as the hands can change with CREST.  Here is a link to CREST syndrome that might answer a few of these questions for you. 

 

Muscle pain is often associated with scleroderma. Symptoms will come and go, leaving you feeling like you're going crazy, but I assure you, you are not. :balloons:

 

Keep us posted on your progress. :)


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Sweet,

 

Thank you for your insight. I appreciate you reminding me that I need to be patient regarding a diagnosis. 

 

My Rheumatologist gave me information on Cellcept and Plaquenil. After a series of bloodwork, she preferred I take Cellcept. I will see her next month to further evaluate. I'm just thankful I'm tolerating this medication. All too often I have gastric upsets with so many medications. 

 

As for the hyperpigmentation, this made great strides during the period when I wasn't on any medication for this illness. Now I shouldn't complain since it's fairly even in color. Most people think I'm suddenly tanned. Although I would prefer the glow of a sunkist tan. I should just be content it's a fairly even color in most places. 

 

Thank you for the advice regarding the ring sizing. I've had a new ring sitting at the jeweler for 6 months waiting for sizing. I will see if they can do what you suggested. 

 

Appreciate all your input Sweet. 

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I too have Crest Syndrome, my feet have been swollen before but mildly.

 

This is July in Indiana; we have had super hot weather the past week and a half 90's with heat index 100. Yesterday and today my feet/ankles are huge; I've never seen them this big before, I was concerned until I started reading everyone else's post, I figure if it isn't down after 4th of July and the weekend I'll call the doctor.  I've been sick since I was 27, but only recently diagnosed with CREST, but it makes perfect sense to me know with all the crazy symptoms I've had I'm now almost 46, so when they finally gave a name to my issues I did find some relief in knowing name finally after all the crazy issues I've had.  I choke on liquids, I actually aspirated a French fry over a year ago, which threw me into pneumonia off and on for 2 months, that's when doctors started wondering if I didn't have more than fibromyalgia and osteoarthritis, sent me to a new RA doctor and as soon as I told her the weird symptoms I've had for 20 years, she instantly said I think you have CREST, she tested my blood SED rate high which it has always been since age of 27, same with my positive ANA, but then she went on to test my ANA pattern which was centromere. She then called said it's what we talked about, so I did feel some relief for name put to everything I've dealt with for so many years now, but then I had to research what CREST was because I'd never heard of it, once I read the symptoms I thought, oh my everything makes perfect sense now. 

 

I am a bit scared because I've been sick since the age of 27, so now that 20 years have passed and over the last 10 my body has declined a lot, so I do get a bit nervous of what's in store for me these next few years, I own a business and work 7 days a week, but I can no longer stand on my feet for more than a half hour, my fingers have turned crooked from the osteoarthritis, so grasping things hurts and I have oedema (dropsies), I'm in severe pain daily, especially in the morning when I first wake up, I've not slept in a bed for about 4-5 years because I can't or I won't be able to get up in the morning from the pain. 

 

I guess I'm here for moral support because I don't know anyone who has CREST, my family and close friends have never heard of it either.  So I'm lost when it comes to this syndrome.  I want to know if certain foods help, certain herbs anything natural, I need to change my habits to benefit my health, I have 2 grandbabies on the way, my first ones ever, I want to be around for many years to watch them grow up, so if anyone has advice to better my health, what helps, what to stay away from, I'd be so thankful.  Sorry to ramble I'm just so excited to know I'm not alone, that there are others dealing with this. 

 

Thank you all so much for sharing your stories.

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Hi Charwim,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with CREST and are suffering with so many unpleasant symptoms. I can understand your sentiments when you were able to obtain a diagnosis; I did feel similar - whilst not ecstatic at the prospect of having scleroderma, nevertheless like you, I was quite relieved to at least have an explanation of my symptoms. We do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.

 

Regarding your enquiry about natural remedies, there are many healthy, natural things you can do for systemic scleroderma. I've included a link to our page on Scleroderma and Alternative Therapies, which I hope you'll find helpful and interesting.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello to all.  I am a Registered Nurse from South Carolina.  I am 47 years old and was just recently diagnosed with CREST.  It took over a year to get the final diagnosis.  I was told for 3 years I had lupus, I had my doubts and kept looking for answers.  I am now in stage III kidney failure and no one is really sure why.  I go to a large acclaimed hospital for care that has a scleroderma center of excellence. 

 

I feel very good about my care.  What I don't feel good about is how I feel right now.  I have significant joint pain daily with horribly swollen fingers and ankles.  The worst part for me other than the pain and fatigue is the swallowing issues.  I just had a swallowing test a few weeks ago and was told I have classic scleroderma esophagus.  I choke on heavy foods like, chicken, beef, vegetables and  anything bulky.  I am overweight and this is so frustrating. The only things I can eat without vomiting or pain is chips, candy, popcorn and ice-cream all of which I do not need. 

 

This is not a disease that I ever thought I would be battling.  I have a 24 year old son with autism and muscular dystrophy, so that is hard enough, but to care for him feeling like this - No fun. :sad:

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Hi Stacey,

 

Welcome to these Forums!

 

I'm very sorry to hear that you've been diagnosed with CREST and that it is affecting you so badly.

 

However, I'm glad to hear that you are receiving the best treatment and have a good medical team, whom I'm hoping will be able to help you with suitable medication and it's possible your disease may stabilise in the future.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello,

I'm back again to update on the latest and perhaps a better definition of my diagnosis. My CT lung scan showed a dilated pulmonary artery. Off for an echocardiogram to see if I had pulmonary hypertension. Relieved the echocardiogram came out fine. Although my Rheumatologist wants me to see a pulmonologist anyway. My Rheumatologist is telling me that I have CREST. She increased my cellcept to 2000 mg which is slowly taking away my hyperpigmentation in blotches all over. My SED rate refuses to drop. Rheumatologist is telling me perhaps being on Cellcept longer will help with inflammation. She's telling me this is going to be a maintenance dose. Like for the rest of my life? Skin on my hands is still tight and shiny around the cuticles.

 

Discovered I need to get educated on this myself in order to ask questions. Otherwise this doctor isn't terribly informative. Sure brings to mind that doctors are "practicing." 

 

Muscle aches are mildly returning as Sweet said they would. I'm going to try going back to see my trainer to work on stretching exercises. My hopes being that I don't return to the horrible muscle pain I experienced previously. 

 

As one of my client's daughter often tells me, getting sick isn't for sissies. 

 

I do have a question if anyone might know? My optometrist checked my eyes, he said I had exudate floating behind my retina. He wasn't sure if that was disease related? He's sending me to a retina specialist. So many variables in this illness. Ugh

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Hi all,  I am a psychologist from Maryland, and have had autoimmune symptoms for many years that went undiagnosed, so I get how crummy that feels.  I had been diagnosed with Mixed Connective Tissue Disorder, which I still have. 

 

Last month I was diagnosed by blood work with systemic sclerosis as well as skin scleroderma.  I'm taking CellCept which will be increased from 1000mg per day to 3000-4000 based on kidney functioning,  I have interstitial lung disease, intestinal sclerosis, and kidney involvement.  I was told by my (great I think) rheumatologist to take my blood pressure daily and contact her immediately if it spikes, as apparently this can prevent kidney failure.  So I am managing.  Depressed, made worse by my little Chihuahua having just been diagnosed with lymphoma and given only a few months.  One of my questions is does anyone suffer from bone crushing fatigue with days when they can hardly hold their head up?  This is my worst symptom and I am only working two days a week as that is all I can manage.  The fatigue never leaves or lessens much. Anyone have it like this?  How do you cope?

    

Fortunately I live  a half hour away from Johns Hopkins, who have one of the best Scleroderma Centers in the country, so I will undergo a full work up in the Fall to provide my rheumatologist and I with another opinion or additional recommendations.   

   

 

Glad to find this forum for support, 

 

Best Nancy 

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Hi Angelique,

 

You're correct about needing to educate yourself about scleroderma; it does make a difference if you can take control by getting as much information as you can. It is possible that you may need to take immunosuppressants for a long time, but your rheumatologist is the best person to advise you about this.

 

I've included a link to our medical page on Eye Involvement, which I hope you'll find helpful and informative. I do hope that your retina specialist will be able to advise you.

 

Kind regards,

  •  

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Nancy,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with scleroderma and a lot of unpleasant symptoms which have affected so many parts of your body. Thankfully, you do seem to have a first rate medical team, which should help you to obtain the best treatment you can.

 

I've included a link to our medical page on Fatigue, which I hope you'll find helpful and interesting.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks Joelf, 

 

The fatigue section was highly useful and very validating, most of all.  You look fine yet feel like someone hit you with a bus!!  I guess you just learn to live with it.  I was a really physical person prior to scleroderma.  I had a horse that I had to sell due to physical limitations and overall fatigue and malaise.   I'm really struggling with the shortness of breath and fatigue (interstitial lung scarring) leading to my being so lethargic.  They tell you to exercise but exhaustion after exertion is one of the symptoms,.  When I even mildly exercise I go back to being totaled.  I have found mild swimming really helpful and might look for a gym with a pool for winter (we have our own pool now).

 

I often struggle with feeling useless,  What have others found to replace their prior physicality?  Some days I literally do nothing,  (Not motivated to do housework),  Its a really bad feeling but sometimes I just can't push through it.  Luckily I have a gem of a husband who really gets it,  Thanks and nice to find a forum of people who understand,  If I can ever be a help about especially psychological symptoms, please let me know. 

 

Nancy HG

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Hi Nancy,

 

I can understand your frustration; I used to have horses, but only ride occasionally now (not really anything to do with having scleroderma, more to do with the fact that I'm very careful what I get on nowadays - I don't bounce very well these days!! :wink:)

 

I have interstitial lung disease, but I've been diagnosed now for over ten years and have found that my symptoms have stablised a lot; in fact I'm gradually cutting down the amount of prednisolone I take, which will be quite a relief. Although I still like to keep very active, I do find other things take over my life, so things are different, but not necessarily worse.

 

Do have a look at the rest of our medical pages; knowledge about the disease is power, as is a positive attitude.

 

Kind regards,

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks Joelf,

 

I am actually feeling a bit better on increased CellCept (3000 mg which will go up to 6000 and Plaquenil ) and I am learning to live with it.  Although I'm still too fatigued to do much and sad about that.  I take an antidepressant which helps too.  Are there other meds that are commonly prescribed for systemic sclerosis?  I have thus far got interstitial lung disease, intestinal and kidney involvement.  Always a little scared about what's next but glad to finally have a clearer diagnosis. 

 

Thanks for responding and I would very much like to hear what other scleroderma drugs people have found helpful.  Nancy  

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