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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 mollie

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Posted 09 August 2009 - 12:22 AM

Hi Everyone...I have been following this forum for sometime now and wanting to join but a little reluctant as I have not been formally diagnosed with Sclero (I do have a positive ANA and Scl-70). However, I seem to have many, many of the symptoms/problems that all of you have described in your various topics. I have been diagnosed with UCTD and severe Gastroparesis and believe that my Gastroparesis is a result of my autoimmune disease (possibly Sclero) as there is no other apparent reason. I have had Sjogrens symptoms for several years (together with breathing issues from time to time, the never ending fatigue, hospital visits, joint pain, breathing issues, etc.) and my Rheumatologist also believes that I have Sjogrens as well (although I have elected to not have the lip biopsy). Unfortunately, I have been on prednisone for almost 4 years and cannot seem to go lower than 10mg/daily or I go into a tailspin.

I was wondering if anyone has been diagnosed with Sclero related Gastroparesis. I would be very interested in any treatment that may have helped. I very much appreciate the opportunity to join this group. Thank you. -Mollie

#2 janey

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Posted 09 August 2009 - 04:59 AM

Mollie,
Welcome to the ISN Forums! I'm sorry you are having to deal with so many issues. UCTD is a common diagnosis when doctors aren't quite sure which connective tissue disease or diseases are causing your symptoms. Since you have been reading the forum I'm sure you've noticed that everyone is different with these diseases. Many do get Sjogren's and other overlapping diseases, but it seems that most of us do suffer from things like Raynaud's and GI problems. I'm glad you are seeing a rheumatologist. I hope he or she is someone that is knowledgeable about scleroderma and its related symptoms.

We do have a section on Gastroparesis on one of our GI pages. I've provided a link to that section. It is followed by some real personal stories of patient that have CTD and gastroparesis. I hope this helps.

Again, I'm glad you jumped in and join us. It's a great place to come when you need information, support or just want to chat. We look forward to learning more about you.

Big Hugs,
Janey Willis
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#3 mollie

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Posted 09 August 2009 - 05:55 AM

Thank you so much for your reply, Janey. I have a very good Rheumatologist who has taken me a long way but don't have alot of confidence in his experience with Scleroderma. I'm also trying to find a gastroenterologist that has autoimmune/gastroparesis experience. I don't have any confidence anymore in my gastroenterologist as he pretty much has said my only options at this point are reglan or gastric bypass surgergy (which I politely declined). Thank you again for your kind reply and welcome. -Mollie

#4 Sheryl

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Posted 09 August 2009 - 10:40 AM

Hello Mollie and welcome to Sclero Forums.
I am taking Reglan and have been taking it for about 7 years now. Also, I take 6 Colestid capsules to help with Gastroparesis. I don't have any problems with Reglan. I have a couple girlfriends taking it also whom haven't had any issues with it. What are you taking to help you at the moment? Feel free to ask your questions or write to any of us individually. We will do our best to answer you if we have been there and done that so to speak. I'm happy you decided to join our group.
Strength and Warmth,
Sheryl

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#5 debonair susie

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Posted 09 August 2009 - 10:57 AM

Hi mollie,

I too, would like to welcome you! Because we have such a large "family" here, I'm sure you will receive many more welcomes.

I am hopeful that you will find a dr who will be better attuned to your health issues/concerns, which will be a relief to you, I'm sure.

As I'm sure you've already found, there are many of us who have had to go through a few doctors before we found one that "fits" our needs. It was four years before I was finally diagnosed with the beginning of several diagnoses, after countless tests, visits, etc. ...However, this is not to say that you will experience the same.

Please keep us posted, mollie!
Special Hugs,

Susie Kraft
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#6 Amanda Thorpe

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Posted 09 August 2009 - 11:53 AM

Hello Mollie

We don't care what your diagnosis is we're just glad you're here! I don't have any advice regarding your gastro issues as I have only just joined the gastro club but as you see you've already had great replies.

Take care and keep posting.
Amanda Thorpe
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#7 mollie

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Posted 12 August 2009 - 11:46 PM

Hi Everyone...thank you all for making me feel so welcome and sorry for the delay in responding to emails (I'm still working full-time so most days I have no energy for anything when I get home).

Sheryl - I'm actually taking Reglan but can only tolerate it once a day. I'm also currently on Nexium. My Rheumotologist wanted to put me back on Methotrexate however I'm really afraid to go back on it as my ALT and AST levels started to go up when I was on it but have been completely normal since I went off. I've been on Prednisone for 4 years (currenly 10 mg/day) and in the past, I have been on Plaquenil, Orencia (had to stop the infusions because of lung issues), etc. I have been feeling better the last couple of months and attribute it to the Vitamin D treatment. I started seeing an Endocrinologist in February because of my TSH levels and she discovered that I was Vitamin D deficient (until then no one even thought of checking the Vitamin D). She immediately started me on 50,000 units (once a week for 8 weeks) then 1000 units per day thereafter; I went on another 8 week treatment to continue raising my level (although while it was in range it was on the low side). I am now taking 2000 units a day and will see her for a follow-up in a couple of weeks to see if I will stay on that dose.

I'm also currently on pain medication most days for my lower back, leg and joint pain (have had physical therapy and my neuro has also tried several different meds to no avail) which I try to avoid if possible. I also had to go on blood pressure medicine because my blood pressure spiked for no apparent reason (that was actually the first time that my Rheumatologist looked very concerned as he said that he wanted me to see my Pulmonary specialist right away (xrays, 6 minute walk, etc. came back fine but guess I will now have to keep taking the blood pressure med).

One of my biggest problems is my Gastoparesis. I really cannot eat or drink much of anything. Also, because of bacterial overgrowth, I have to take antibiotics every 6-8 weeks. I have about 4 items that I can still eat or drink and tolerate but seem to be getting what I need so I really shouldn't complain. I'm in a much better place than I was 5 years ago when this journey started (although I've had a number of symptoms for years...just didn't make the connection).

Again...thank you all for listening and being so welcoming.

-Mollie

#8 Jeannie McClelland

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Posted 13 August 2009 - 03:53 AM

Hi Mollie,

I was away when you joined us, so I didn't get a chance to welcome you to the Forum. I'm really sorry you are having such a rough ride with scleroderma. I wish you all the best and hope you'll post often. While we don't always have the answers, we do try and keep current on the research being done. Where we shine, I think, is in having caring and supportive members. You'll make lots of friends here.

Welcome, again.
Jeannie McClelland
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#9 Sweet

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Posted 17 August 2009 - 08:43 AM

Hi Mollie!

Welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
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