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Hello - I'm new, with CREST


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#1 Winter

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Posted 08 April 2009 - 09:22 AM

Hi there -

I'm 37 and my problems started around Jan 2007. I had my son in Sept 2006 and when my postpartum hairloss was still going on when he was 12mo and I was done nursing, I decided to see the doctor.

After seeing my OB, a Dermatologist, a Gastroenterologist, and Rheumatologist, I finally found out I have a +ANA with the centromere pattern. I also have achalasia/esophageal dysmotility and had the Heller Myotomy surgery in June 2008, which was life changing because food/liquids would get stuck every day. I am so glad I had that surgery!

Other than the +ANA, hairloss, and dysmotility, I have no other scleroderma/CREST symptoms. My rheumatologist said it appears I could just end up having a mild form of it. She put me on Plaquenil just to see it would help the hairloss but I haven't been on it long enough to see any effect yet.

I of course have tons of questions and I know with this disease there are no definitive answers!

I'm wondering about Raynaud's, do most people have this as their first symptom? Is this something that could spring up on me at any time, or since I have had my other symptoms for 2 years now with no Raynaud's, could I possibly not get it at all? Could it be several years before I see other symptoms, or do they show up during the first few years?

I'm also wondering if I should have another baby. My rheumatologist said there was no reason I couldn't, but I'm terrified the huge hormonal changes would make things worse! I'd be a happy camper if I could make it thru the rest of my life like I am now, so I don't know if I want to take the risk.

Thank you for any feedback/opinions! :)

#2 Penny

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Posted 08 April 2009 - 10:24 AM

Winter,

I want to welcome you to the Forums.

There are some great resource pages under the Medical section of the ISN site that you can check for information as well as one of the best group of people you will ever meet that will share their experiences with you, offer you a warm wide shoulder to cry on and best of all, infect you with laughter when you least expect it.

To think that you are dealing with all of this and a two year old at the same time... I remember my children at two years of age. Such a precious age when all of a sudden they discover the richness of full sentences and the power of the word "No". Mine were each as much trouble as a dozen hyper lab puppies covered with mud and those times are the memories I cherish most.

You will also find users here who have had children after diagnosis. I know that the thought must be scary, everything is still so new and since these conditions affect everyone differently you are feeling a bit adrift right now. Just know that you are not alone, in fact you have just gained a much larger family with a tendency to hug.

Warm hugs,
Penny

#3 Kathy D

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Posted 08 April 2009 - 11:47 AM

Hi Winter,

I am sorry you are diagnosed, but glad you are here, there are great people here!

I do not have CREST, but my raynauds showed up a few months before the fatigue and fever started. Then with in another few months my joints got angry.

I'm sorry I dont have answers to your other questions but wanted to welcome you.

KD
Diffuse Scleroderma Diagnosed March 2009

#4 Margaret

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Posted 08 April 2009 - 01:13 PM

Hi Winter ,

Welcome to the group. Your symptoms sound just like my sons' when he was diagnosed. He started with a 20# wt loss, wicked fatigue, rib carriage pain due to restrictive lung disease, esophageal dysmotility, loss of voice, + ANA, and + Anti-RNA Polymerase 1/111. He had no skin issues or Raynaud's. He suffered for 9 months before they started him on Plaquenil and that will be two years this June. It took a couple of months but now he's doing fine. His initial diagnosis was sine Scleroderma but it's been changed to UCTD. I hope the Plaquenil works just as well for you.

Take care Everyone.
Margaret

#5 nan

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Posted 08 April 2009 - 01:31 PM

Winter,
I too have CREST. In 1998 I was diagnosed with Fibromyalgia, Sjogren's, and Raynaud's. I was able to work until 2004 when I had a major GI bleed which was caused by GAVE( watermelon stomach) . This can go along with scleroderma. I was finally diagnosed with CREST in 2006. I don't have the skin hardening so I feel very lucky.
Nan

#6 Jeannie McClelland

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Posted 08 April 2009 - 01:36 PM

Hi Winter,

Welcome to the Forum! As Penny said, we're one big family and we have a tendency to hug! Be warned.

Which do you want to know about first, Raynaud's as a first symptom or pregnancy in scleroderma?

Let's do Raynaud's first. It's a funny thing and much like everything else with scleroderma, varying greatly from person to person. It wasn't my first symptom - mine was unrelenting body aches, I think. My Raynaud's turned up about a year after my diagnosis. Just 5 to 20 % of people with Raynaud's phenomenon subsequently develop scleroderma, but nearly 90-95 % of scleroderma patients end up with some degree of it.
We have a great page on Raynaud's. You might want to check it out.

Pregnancy and Scleroderma is the page with all the medical articles and Pregnancy Question is a good thread that was on the Forum recently. Lisa Bulman, one of the Forums Team members, posted a great reply to the thread, telling her personal experience with having children when one has scleroderma.

Keep asking questions! And here comes another one of our famous hugs. Once more, I wish you a warm welcome to the Forum.
Jeannie McClelland
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#7 gigi08

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Posted 08 April 2009 - 02:41 PM

Hi Winter,
I was just wondering if your hair loss is in spots (alopecia)?
Gigi08

#8 Snowbird

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Posted 08 April 2009 - 03:58 PM

Hi Winter

I would like to say hello to you as well. I also have a high ANA, centromere pattern which showed itself a few years ago. Bloodwork alone is not enough for a diagnosis of scleroderma. You also need at least two of the symptoms in CREST (as I'm sure you already know, each letter stands for a separate symptom). Both my hands and feet have been very susceptible to the cold for years and years, but just this winter, I started to have blanching in my feet with tingling/numbness. It could be Raynaud's but not yet diagnosed -- best to be on the watch list until certain. My family doctor told me that you can also have Raynaud's without having scleroderma (I think that's when they call it primary vs. secondary which means it is associated with another disease like scleroderma for example). To answer your question, Raynaud's is not always the first symptom, and some people may never get it at all even though they may have scleroderma. Yes, you can also go many, many years or even forever and never get worse or in some cases, symptoms can crop up at any time. There's no definitive answer unfortunately because it seems no two cases are identical. These autoimmune diseases are just a wonder -- must be just to keep us guessing ;) .
Sending good wishes your way!

#9 Amanda Thorpe

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Posted 09 April 2009 - 10:11 AM

Hello Winter

Welcome to the forum and to a tailor made disease! :lol:

Everyone's so different as has already been said. It's also already been said that most people with sclero get Raynaud's at some point. For me Raynaud's came last of all and as such is not severe.

I don't think anyone can say what will or won't come your way and when, to misquote Mr. Gump, "scleroderma's like a box of chocolates, you never know what you're gonna get!"

What you can count on is the support of this forum.

Take care

Amanda
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#10 Winter

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Posted 09 April 2009 - 11:51 AM

THANK YOU everyone for your welcome, support, and insight!

Snowbird - you reminded me that my rheumatologist only lists +ANA and alopecia as my diagnosis. Maybe I'll get extremely lucky and not go any further!

Gigi - I have diffuse hairloss, no . I had a scalp bx that said chronic folliculitis and a non-scarring alopecia probably AGA (androgenetic alopecia), and TE (elogen ffluvium) should be considered.

I'm reading up all I can about pregnancy's effect on scleroderma. Right now my only issue is hairloss. I don't have fatigue or joint pain or anything. I work full time and get up at 4:30am! I really want a 2nd child but don't want to make things worse. I'll have to do a lot of researching.

Does Raynaud's affect your manipulation and grip? My job is ALL computer and I need my fingers!!

I'm sorry I can't respond personally to everyone but my computer time is always limited between hubby, 2 yr old cutie, housework... you know the drill!

#11 Jeannie McClelland

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Posted 09 April 2009 - 12:29 PM

Hi Winter,

Raynaud's, as I understand it, doesn't affect muscles and nerves directly. The damage is done by the vasospastic reaction to cold (and sometimes heat), depriving the affected area of the oxygen-rich blood until the episode eases.

I don't honestly know if there is any association of Raynaud's to loss of dexterity and grip. My personal experience has been that there isn't, but I'm not a doctor :) .

I spend a lot of time at the computer keyboard and then for fun do a lot of work with textiles that requires pretty high levels of dexterity. I do notice that if I'm having a bad 'go' with Raynaud's, I do get a little clumsy because my fingers are either numb or painful, but that's definitely transient.

Hope that helps!

Warm hugs,

Jo
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#12 Winter

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Posted 09 April 2009 - 01:06 PM

That's good to know you can still be active with Raynaud's! I'm sure that can be different with each person, though. This is not the disease for me who has to plan everything and know what's going on at all times :angry:

I have found that I seem to get a cold what seems like every few months now, whereas before my pregnancy I never went to the doctor and only got maybe one cold a year. My 2 years old is in daycare but I assume it's a combo of that and the autoimmune issue?

#13 jefa

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Posted 09 April 2009 - 10:08 PM

Hi, Winter. I am glad to see you getting so many responses to your questions. I'd like to join in welcoming you to the forums and getting to know you better.
Warm wishes,
Jefa

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#14 Sweet

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Posted 10 April 2009 - 09:11 AM

Hi Winter,

Welcome to the Sclero Forums. I'm so glad you've joined us, but sure sorry it's due to CREST. I also have CREST. The Plaquenil has been a life saver for me. It takes a few months to kick in, but it really helps with fatigue, pain and for some has the ability to halt the disease in its track. So stick with it. Funny thing is one of the side effects from it is HAIR LOSS. I felt like a chemo patient for the first 8 months. I lost hair by the handfuls. I have a lot of hair so it wasn't an issue, but I wanted to give you a heads up on that.

I look forward to knowing you better.
Warm and gentle hugs,

Pamela
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#15 Winter

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Posted 13 April 2009 - 05:25 AM

Hi Sweet - I'm glad to hear positive things about Plaquenil. Funny that I was on it to see if it would help my hair loss! I stopped it in February before I had a colonoscopy and never went back on it. I want to wait and see if we decide on trying to get pregnant again, and I know Plaquenil and pregnancy don't mix. I will definitely go on it in the future when/if the time comes! What parts of CREST do you have?

#16 Sweet

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Posted 14 April 2009 - 04:09 AM

Hi Winter,

I wish you the best in your choices.

I have R,E, a bit of S and a lot of T :)

I also have Lupus, Fibro and Sjogrens. I'm battling a lot of muscle and joint pain and fatigue the most.
Warm and gentle hugs,

Pamela
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