Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


New Member

  • Please log in to reply
13 replies to this topic

#1 Alice



  • Members
  • Pip
  • 1 posts
  • Location:Oklahoma

Posted 02 January 2009 - 11:12 AM

Hi everybody! My name is Alice and I was diagnosed with scleroderma in 1989. I was one of the lucky ones I guess. The doctor I went to had another patient with sclero at that time, so he knew what tests to run. I had a pretty benign case until 2001. Up to then just Raynaud's and trouble with the esophagus were really all the problems I had. In 2001 I caught a really bad case of bronchitis and I've had problems since then causing me to retire from working. I had fluid on my lungs and blood clots with lots of scarring. Then on maintenance drugs until 2008 when I had fluid around my heart. I had a pleuroscopy with pleurodesis for the lungs and a tampanade for the fluid around the heart.

Has anyone ever had this happen to them? If so, how long did it take you to bounce back from it. I am so tired I don't feel like doing anything at all. They gave me a steroid shot for inflammation after I got out of the hospital, but I'm not taking any medicine but Plaquenil for the sclero right now.

I would love to hear from you. Oh - I have the CREST version of the disease.

Oh - one more question. My doctor said that sclero has one more ANA marker than lupus. Does that mean that we have the lupus symptoms to worry about too.

Thanks for your help!

#2 smac0719


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 377 posts
  • Location:Tampa, FL

Posted 02 January 2009 - 11:46 AM

Hello Alice and welcome to the forums. It sounds like you have been through quite a bit with scleroderma. I have scleroderma, Raynaud's, Sjogren's with a possible overlap of lupus. The verdict is still out on that one. I don't believe it's "the norm" to have lupus symptoms along with sclero but I'm not sure. I have an aunt and cousin with lupus so I do know that we have some very similar symptoms. The closest I've come to lung related problems is a bout with pleurisy in 1986 and then again 1992. I was not diagnosed with scleroderma until 12/06.

I hope things begin to improve for you very soon.
I may have Scleroderma, but Scleroderma doesn't have me!

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 02 January 2009 - 12:18 PM

Hello Alice

Welcome and glad you've joined us, you're clearly a sclero veteran! :lol:

I'm sorry things progressed so much so that you retired from work, I retired early thanks to sclero. Mind you I don't know how people struggle to work day after day as many on this forum do, at least we don't have to do that.

I don't have any experience with heart/lung issues so can't help there but wanted to say hello. With regards to the lupus, you can have sclero with a lupus overlap but I assume your doctor would have explained this if you did so that aside I can't see any need to worry about lupus symptoms. However can you ask your doctor for clarification for peace of mind?

Take care and look forward to hearing from you again.

Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#4 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,624 posts
  • Location:(United States)

Posted 05 January 2009 - 08:06 AM

Along with smac and Amanda, I wanted to join them in welcoming you to the Sclero Forum, Alice.

I was diagnosed 6 years after you, but my symptoms began in 1991. My symptoms began with Raynauds and hand changes with pain. Then the face, chest, arms, legs feet, as well as the esophageal reflux.

It is so wonderful...that you have a doctor who has the knowledge of what Scleroderma is about.

It is unfortunate that you had to retire, but certainly understand how difficult, myself...how I was unable to work any longer.

With the lung issues you have, I can't imagine how you were able to work as long as you did, even if you retired shortly after the problems began.

At any rate, may you feel a sense of comfort soon.

I'm glad you are posting...take care, Alice.

Special Hugs,
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,283 posts
  • Location:Minnesota

Posted 05 January 2009 - 09:07 AM

Dear Alice,

Welcome to Sclero Forums! We're delighted to have you join us. We're also hoping your message inspires more of our new members to jump in and say Hello. And if they are stumped for something to begin with, the least they could do is give a welcome to you, right?

Scleroderma is very similar to lupus, because they are both forms of systemic arthritis. So many of the symptoms may be similar, and many times scleroderma is misdiagnosed as lupus. But most people with scleroderma have only scleroderma, which is more than enough to deal with by itself. You may want to visit our pages on Overlap Syndrome for more enlightenment.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,007 posts
  • Location:Canada

Posted 05 January 2009 - 11:12 AM

Hi Alice

I can't add any more either...but wanted to say hello, glad you found us. You'll find this a great site for good information and moral support. Take care.
Sending good wishes your way!

#7 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 05 January 2009 - 11:18 AM

Hi Alice,

Welcome to the Forum! We're sorry that you need to be here, but we're glad you've joined.

Y'know, you might just be the first person I've met who got such a quick diagnosis! Well done, your doctor.

I'm sorry you've ended up with heart/lung problems. That's not so much fun~ No wonder you feel pretty tired. As far as bouncing back, I'm not so sure about the bounce part, would you settle for wobbling back? :lol:

Plaquenil is supposed to help with the fatigue, but when my rheumatologist prescribed it, he did say it sometimes took several months to really kick in. You can research it on the main Sclero.org search engine.

You might also have a look at the page on Fatigue. It seems to be such a "feature" of our lives. Fortunately much more attention is being paid to it these days.

Hope things look up for you soon,

"Hot chocolate and cinnamon toast cure most woes..."
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#8 Nina


    Silver Member

  • Members
  • PipPipPipPip
  • 125 posts
  • Location:Claymnont, DE

Posted 06 January 2009 - 03:28 PM

Hi Alice and WELCOME!!
You have definitely found the right place. Lots of information and suppot ~~
So far I have been diagnosed with Fibromyalgia, Raynauds, "Watermelon Stomach", Limited Scleroderma/CREST and I believe more is on it's way. You ar indeed very fortunate to have found a knowledgable doctor early on... Getting a diagnosis seems to be the first major problem for most of us.
I don't have a lot to add ~ just glad you are here ~ and I'm sure you will be also!
Much love,
Nina (DE)

#9 Margaret


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,014 posts
  • Location:Pennsylvania

Posted 07 January 2009 - 03:38 AM

<<Then on maintenance drugs until 2008 when I had fluid around my heart. I had a pleuroscopy with pleurodesis for the lungs and a tampanade for the fluid around the heart.
Has anyone ever had this happen to them?>>

Hi Alice ,

Welcome to the group. I see you joined a year ago but just started posting.

My son has the diagnosis of UCTD/possible sine Sclero. He started with pneumonia the beginning of Dec and just got out of the hospital after having developed pleural effusion and possible blood clots in the lungs. They took off over 800 cc's and sent him home with the remainder (3-400 cc's) to dissipate. They also said (from the CT scan) that he has a small amt of pericardial fluid, too. The doctors are attributing this fluid to a Sclero flare since it didn't show the inflammatory properties of pneumonia. He's home now and starting to feel better and getting his strenght back. He. too, is only on Plaquenil for the UCTD.

Take care, Everyone.

#10 epasen


    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts

Posted 07 January 2009 - 06:09 AM

Hey there Alice,

just wanted to welcome you too! Hopefully you'll get a lot of answers from here. :)


#11 canon


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 07 January 2009 - 07:06 PM

Hi Alice,

Welcome to the forum. Sorry your scleroderma has progressed. It is good to hear your diagnosis was quick and you missed the long drawn out process of torment trying to find a diagnosis. I have had raynauds and esophageal reflux problems for many years before someone decided to give a diagnosis but, I am over harboring ill feelings about no diagnosis now, I can feel that change taking place on a daily basis. My symptoms a few years ago started getting worse too. My lung issues are still being worked up and monitored. I still work full time and love my job. My rheumatologist suggested cutting down but will try to adapt until there are no adaptations left to use. Love my home too and would like to keep it as long as possible.

The Plaquenil does help with fatigue most of the time and 2 works better than 1. I can only take 1 because of my stomach. If there is alot going on medically I find myself exhausted too. The body needs the rest to recuperate. Rest up and take care of yourself. Hope you feel better soon.

Can't help with the lupus question but someone else might be able to.

With gentle thoughts,

A happy heart is good medicine.

#12 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,895 posts

Posted 12 January 2009 - 02:44 PM

Hi Alice,

I know I'm a little late, but I didn't want to miss saying welcome!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#13 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 633 posts
  • Location:Minnesota

Posted 13 January 2009 - 07:05 AM

I know I'm also late in chiming in here but I wanted to send a Welcome too! This is a wonderful place to come to for advice, support or to just vent. I too have the systemic sclero, along with 5 other immune. I have lung involvement that has been getting worse and will find out how much more they have deteriorated when I go in February for my quarterly appointment. I wish you all the best and you've come to the right place for information and support.

Warm hugs,


#14 Stef


    Bronze Member

  • Members
  • PipPip
  • 20 posts

Posted 13 January 2009 - 12:09 PM

Welcome Alice!

You will find wonderful people and tons of support here!

Wishing you well,
- Stef