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Limited Scleroderma with mainly GI symptoms


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#1 rlwilliams16

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Posted 11 November 2010 - 03:30 AM

Hello,

I am so thankful for this wonderful website and the ability to connect to others diagnosed with this horrible disorder. I was diagnosed with Limited Scleroderma about three weeks ago by my rheumatologist. My GI referred me to my rheumatologist after a blood test (originally done to test for Celiacs) revealed an ANA of 640. My main symptoms are severe dismotility (stomach and intestines)/ gastroparesis and Raynauds. The Raynauds is simply a minor inconvenience, though I recognize the importance of keeping warm after learning the implications of it. I do have the little red dots indicative of telangiectasia.

There is no skin, joint, heart, lung or kidney involvement based on pulmonary function test, echocardiogram, bloodtests and physical exam.

I started plaquenil and amitiza immediately after diagnosis. No changes so far. I understand it can take up to 6-8 weeks for the plaquenil to start working. I also understand that the plaquenil really won't help the GI symptoms.

I made an appointment at the Mayo Clinic's Scleroderma Center for a second opinion. It isn't until January, which will give more time for some other other-the-counter remedies, recommended by my GI, to be tried. Anyone been to Mayo?

Does anyone out there have the GI problems? I see many references to esophageal problems and, besides reflux, I don't have this complication. I love my team of specialists, but I will feel much better after I get a second opinion from Mayo.

Best of luck to all of you!

#2 Sweet

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Posted 11 November 2010 - 05:49 AM

Hi rlwilliams,

Welcome to the forums. Sounds like you have a pretty good handle on what's going on with you. I too am on Plaquenil, and yes it does take a couple of months to kick in. My specialist told me that it has the ability to slow down the progression, and/or stop the disease in it's tracks. I've been diagnosed for about 10 years, and I believe it's helped me a lot. I do have GERD, and other GI problems which are treated with other medications. Never been to Mayo, but I do know they have amazing doctors there, so it's good you're going.

The best to you and keep us posted!! :flowers:
Warm and gentle hugs,

Pamela
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#3 Amanda Thorpe

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Posted 11 November 2010 - 05:57 AM

Hello RLWilliams16

Welcome to the forums! I am glad that you are happy with your current team of doctors, that's half the battle, mind you getting a second opinion from a scleroderma centre can only be a good thing.

I'm based in the UK so can't say much about the Mayo clinic but not doubt others will.

With reflux the issue isn't just relieving the symptoms but preventing damage to the esophagus. I have what I consider mild reflux but as soon as I mentioned it to my rheumatologist the put my on a proton pump inhibitor straight away to prevent damage.

When you go to the Mayo clinic you might want to think about taking someone with you and/or writing down symptoms/questions you want to discuss when you get there. Sometimes we forget things we want to bring up or what's been said during the appointment

Take care and keep posting.
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#4 Joelf

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Posted 11 November 2010 - 06:27 AM

Hi RLWilliams16

Welcome to this friendly and informative forum.

Sorry to read that you've recently been diagnosed with Limited Sclero, but it's excellent that you have a good team of doctors treating you and in whom you have confidence. I'm sure that's half the battle!

I also have Limited Sclero, but thankfully without the gut involvement, although unfortunately my lungs have been affected.

Good luck with your appointment with The Mayo Clinic and I do hope that everything goes well.

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#5 debonair susie

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Posted 11 November 2010 - 07:42 AM

Hi rlwilliams,

So glad to meet you and so pleased you have chosen this forum.

You really DO have things good when connected to a great team of doctors to oversee your health issues...GOOD for you!

With your upcoming appointment at the Mayo Clinic, we are all anxious to read your findings and theirs, with reference
to your symptoms and health issues.

I'm glad to see that you don't have more than reflux issues, at this time, with regard to the esophagus.
The gastro issues are something several of us deal with, as well, albeit in varying degrees.

I'm also glad to see your skin, lungs, heart, kidneys, nor joints aren't problematic, where your health involvement is concerned.

Again, it's wonderful to see you posting and we really do look forward to hearing from you very OFTEN! :bye:
Special Hugs,

Susie Kraft
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#6 tw1nkles

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Posted 11 November 2010 - 08:16 AM

I was also recently diagnosed with limited scleroderma (CREST). I originally went to the doctor because of swallowing issues, and then after having a motility study we found that my lower esophagus is completely immobile - it registered zero pressure. I take omeprazole once daily to help keep the acid in check.
I also have Raynaud's and am taking nifedipine to help with that.
There is not much skin involvement on my hands - the skin is very dry, they are a little puffy, and I have a few of the little red dots near the cuticles on a couple of fingers.

It sounds like we're in the same boat :)

However, I need a new rheumatologist. Mine basically said "You have CREST Syndrome. You're fine." and to come back every couple of years for an echocardiogram. And then she argued with me about my esophageal motility test results. I wish I was close to someplace like the Mayo Clinic!

#7 Amanda Thorpe

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Posted 11 November 2010 - 09:11 AM

Hello Tw1nkle

Welcome to the forums and the world of scleroderma! You'll never be bored that's for sure!

We have a list of scleroderma experts on site if you're interested in seeing one.

I was diagnosed with diffuse scleroderma 3 years ago and was advised that for the first 5 years of the disease, that's any form of systemic scleroderma, you should have lung function tests and ECHO's. To be told you have CREST aka limited scleroderma and to just go away is not in your best interest.

Take care and keep posting.
Amanda Thorpe
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#8 tw1nkles

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Posted 11 November 2010 - 09:28 AM

See, this is why I need a different rheumatologist! I had an echo and a chest x-ray, but I've never had a lung function test, never was given any medication options other than what I stated above.
I've seen that list of specialists before but none of them are close to me at all - I'd have to fly somewhere :(

#9 Jeannie McClelland

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Posted 11 November 2010 - 12:16 PM

Hi RL and Tw1nkles,

Welcome to the Forum, RL (Tw1nkles, I got you in your Welcome New Member post. :D).

Asking a scleroderma forum if anybody has GI symptoms is like asking if anyone would like to win the million-dollar lottery! The roar of "Yes!" is likely to deafen you. I've got GI issues too, most of the way from top to bottom, it seems. I had fundoplication surgery which has worked out really well for me and medication is helping the rest of it. It can be pretty miserable, but lots of things can help including diet, stopping smoking (which I know neither of you do, right?), skipping the big bedtime snack and so on.

Tw1nkles, it is sometimes really difficult to get to a recognized scleroderma expert, so what we have to do is educate our own rheumatologists if necessary. That takes tact, but most doctors are willing to learn. I took my family practice doctor a big fat notebook full of scleroderma research print-outs (check out the ISN Newsroom for the latest) and he just laughed and said I'd given him his homework!

I'm so glad you both joined and look forward to getting to know you better. See you around the Forum!
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#10 Shelley Ensz

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Posted 11 November 2010 - 12:51 PM

Welcome to Sclero Forums, rlwilliams and tw1nkles! I'm delighted that you have both joined (and posted, too, no less).

RL, it can take a lot longer for plaquenil to kick in, sometimes three to six months. So don't give up hope on it yet. I found it extremely useful myself and was on it for many years, until I had to quit as I also have psoriasis and it was making it worse. But it is usually a very well tolerated drug with few side effects and when it works, it works well. You'll do fine at the Mayo Scleroderma center, I'm sure.

Tw1nkles, you do really need to hie thee to a scleroderma center! Coming back in a few years is simply not acceptable care for a systemic scleroderma patient. Period.
Warm Hugs,

Shelley Ensz
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#11 Sheryl

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Posted 11 November 2010 - 01:53 PM


rlwilliams16,


After running tests for Celiac's disorder what was the outcome? Do you have Celiac's or just bacterial overgrowth and major issues involving your gastro-intestional tract.? If you have questions about Incontinence or any bowel questions ask away. For many of us that was/is one of the major symptoms we deal with. On this board we discuss everything from top to bottom, inside and out. We help each other, then we know how to approach things with our physicians without feeling quite so embarrassed.


twinkles and rlwilliams16 welcome to ISN. We are family. We laugh and cry together and share our triumphs and pitfalls together. We hope you feel right at home with everyone here. When we have a bad day others help give morale, to lift our spirits up again. Welcome to our family.

Strength and Warmth,
Sheryl

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#12 enjoytheride

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Posted 12 November 2010 - 07:39 AM

Hi rtwilliams,

Yes to digestion issues.

I have found that changing the way I eat helps. I eat small (too small if you ask me) meals every two hours. It helped. Also fiber, not just fiber rich foods, helped too. Drinking water while eating- in fact I start with a drink of water, then start eating. I do this with pills too- I find it makes it easier to swallow.

Also wearing loose clothes helped me with reflux. Not eating several hours before bed too.

I'm on hydroxychloroquine (plaquenil) - it helped with the fatigue I was having.

It is great that you will be seeing people in the Mayo clinic. Good luck and let us know how it goes there.

#13 NorthStarHope

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Posted 12 November 2010 - 12:15 PM

Just wanted to say hi to all new members, and wanted to say that I don't know what I would do with this forum, it has meant so much to me to have a place to turn to, where someone will actually listen to me.

Thank you everyone!! And for all new members you came to the right place!

Sincerely,

northstarhope

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#14 jillatk

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Posted 12 November 2010 - 03:29 PM

RLWilliams,

Welcome to the forum. We are a friendly bunch. As is true for most of us, I have swallowing issues, GERD and of course issues at the end product. I also had a fundoplication and it really resolved quite a few of my problems. Although I will say that I still have to eat a very simple diet, take small bites, chew slowly and avoid eating or drinking before bed. I have been on Plaquenil for about a year and a half. I think it took about a year before I realized the full effect - reduced fatigue and a softening of the skin on my fingers. I would say get the best doctors you can find and go in with questions written down and like someone else mentioned, take a friend with you to take notes. I never go to any doctor appointment without someone with me.

I also have a pretty good case of Raynaud's. I live in a cold winter environment so keeping fingers, toes and ears warm is top priority. As is keeping all skin lubricated. It is almost a full time job. The most important thing you can do is prevent damage by taking the best care of yourself as you can.

You will get lots of good feedback, advice and support here. But you will still have to figure out what works best for you. We all find work arounds for the things that do not work as they should. Know that you are not alone. There is always someone lurking about on the forum.

Jill