It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 10-11-2007, 10:54 AM   #1
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
scleroderma

I had my dermi appt yesterday and he sort of lowered the bomb on me. He said I have diffuse scleroderma. I thickening on my trunk, upper and lower arms and both thighs more so on my left but my right side is catching up fast, hands and face (again more on my right side but left also catching up. I have had pitting edema for a while and thought the edema was what was what all of this thickening was about and wondered why the diuretics were helping with the pitting edema but having no effect whatsoever on the other.

I asked him if it was possible that I had mixed connective instead of having both SLE and Scleroderma. He said that the scl that comes with mixed is not as diffuse as mine. Usually limited to the face and hands.

I did some reading on the internet and all I can say is WOW!! I was worried about SLE? This stuff is freakin scarry!!

I am waffling between scared and well really ****** off that I have apparantly hit the auto immune jackpot somehow.

He did say that with the overlap, it will hopefully make the Lupus milder. I have an appt with the rheumi on the 23rd to go over all of this stuff. Apparantly, the same treatment will apply. He said there is a UV heat treatment for the thickening but I am not a candidate since I am ro positive.

The good news is I have meds for my rash!!!! lol. That is easily treatable with 2 more daily meds and 2 creams!

Erin
Dallas TX

 
Sponsors Lightbulb
   
Old 10-12-2007, 03:09 AM   #2
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,942
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: scleroderma

Oh, Erin. I am so sorry to read this. You truly do not need anything more. I just read some in an attempt to understand a little more; so if I say or ask anything numbingly & unforgivably stupid, please nonetheless forgive...

I saw a mention of a handful of drs. associated with centers of excellence (something like 19, locales not actually listed).

In a section on esophageal problems, I saw a statement that people with systemic sclerosis "typically" don't harbor anti-Ro & anti-La. I have no idea what "typically" means here, whether it's a generally-accepted concept, or whether it's even helpful if true. (Was in a "straight medical" article on scleroderma.)

Also mention of D-penicillamine as a treatment for skin thickening. (No explanation of what it is, or who is a candidate.)

Also a list of differential Dx'es, which actually included other things causing skin thickening.

Also a list of autoantibodies seen, that don't overlap with those seen in lupus. I imagine your rheumie will re-run same, even if your dermie already ran them?

I know you'll have read as much as you've found already. But mostly I want you to know that I'm thinking of you & hoping that you get straight to the most capable & sophisticated help medicine has to offer. I'll say bye for now, Erin, and hope that we hear from you soon. Many hugs. Always, Vee

 
The following user gives a hug of support to VeeJ:
grunts123 (09-03-2011)
Old 10-12-2007, 11:30 AM   #3
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: scleroderma

Vee, I have done some reading but I havent seen the thing about the ro... I know I am positive for that and was at the very get go when this started. My ANA didnt turn positive till over a year ago.

He is forwarding my labs and skin biopsy to my Rheumi..they actually know each other. The dermi is at UT Southwestern, this is a very well renowned teaching hospital on the leading edge of medicine. As much as I hate what he said, I feel pretty confident he was correct. That is one good thing about where I live, there is an abundance of good teaching hospitals. UT is considered one of the best. My rheumi is with Baylor Medical University.

I know my rheumi will rerun the panel again though, that is just how he is.

< - removed - asking for emails is against the rules - please read them - >

I don't remember what I was already showing positive for but I do know he said that there were several and 1-2 were SLE specific so that is why they are calling this overlap, because it appears I have both of them. He just said that it typically (yep there is that word again) makes the lupus milder.

The reason he has ruled out MCTD is due to the type of scleroderma. It is all over me. I do have the nail bed and pitting on my hands but definately the worst of it is on my arms, legs, face and trunk. He also said the antibody differentiates them too but he also said that it isnt a definate. There is apparantly some variance.

I was pretty freaked for a few days, but I am better. I am going to ask him about the medicine for the thickening. I am photosinsitive so the uv is definately a no.

I have decided to just take it all one day at a time and go with the flow.

Erin
Dallas TX

Last edited by moderator2; 10-12-2007 at 01:21 PM.

 
Old 10-12-2007, 04:52 PM   #4
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,942
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: scleroderma

Hi, Erin. I've searched on multiple phrases, conditions, test results, (etc.) simultaneously, to try find info that includes ALL my search words. I've also searched for "differential diagnoses" to some condition. I know, of course, that reading can't provide answers for any of us, but it sure can help us form better questions for our drs.

I was glad to read how close you are to such highly respected medical institutions. Your dermie sounds like a pro, both for getting this far, then for sending you back to your rheumie. Sounds like you've got those bases covered. Anyway, I'll be watching for your updates. More hugs! Bye for now, Vee

 
Old 10-13-2007, 02:52 PM   #5
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: scleroderma

Vee,

I did find the below reference to the Ro ANA... see below. Like I said scarry. I wondered since I kept seeing references to Sjogren being part of the disease.

186. Okano Y, Medsger TA Jr. Autoantibody to Th ribonucleoprotein (nucleolar 7-2 RNA protein particle) in patients with systemic sclerosis. Arthritis Rheum 1990;33:1822-1828.

Anti-U1-RNP antibodies are found in about 6% of patients, often associated with the SSc/systemic lupus erythematosus (SLE) overlap syndrome or mixed connective tissue disease (MCTD), arthritis, isolated pulmonary arterial hypertension, and early disease onset.[187]

Anti Ro-antibodies (9%) are indicative of a very severe and rapidly progressive disease course, including renal failure and pulmonary hypertension.[186

Erin
Dallas TX

 
Old 10-13-2007, 06:15 PM   #6
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,942
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: scleroderma

Erin, The isolated mention I saw about anti-Ro & scleroderma is recent, dated 2007. I think we're both trying to vocalize the same basic question: Does diffuse scleroderma always involve major organs? The piece I saw that suggested that it did NOT always---that there's a range to "diffuse", just as there's a range in SLE.

Are there current books on scleroderma written by specialists for patients? They'd probaby be more helpful than informational articles written by laypeople, meaning more comprehensive & nuanced. If I see anything that fits this bill, I'll post ASAP. Thinking of you, Vee (I had a minor surgical procedure & am laying low today, but should be out & about tomorrow.)

 
Old 10-14-2007, 03:18 AM   #7
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,942
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: scleroderma

Erin, Dr. Sergio Jimenez, Philadelphia, PA seems to be a "big name" doctor in scleroderma. Bye for now, Vee

 
Old 10-14-2007, 03:38 PM   #8
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: scleroderma

Based on what I have read and what I was told, it does. But the severety is varied. The limited form and morphia doesnt usually. Mine is not either of those. The risk is based on where your body is effected. Such as if only your hands or forearms or face are effected or even if it is just all three the risk is lower. Unfortunately, mine is not limited. My worst areas are actually above my elbows extending all the way to my chest, my back, my upper abdomen and my thighs. It started in my hands and face and then extended up my forearms and then so on. I am still at the beginning stages of it so I am still thickening, and have not started the hardening process yet.

My lungs are already being effected. We knew I had lung problems before this diagnosis. I think my rheumi already knew but did not tell me because he had mentioned scl to be previously but nothing definate. I believe he might have been waiting for the dermi to confim. But my CT showed pulmanary scarring/fibrosis. I have been having kidney problems for a while too. I was to have a kidney biopsy but have really been delaying it as much as possible out of fear more than anything. I have heard bad things about the procedure. My BP has been high and am actually taking meds for it just recently which is also suppose to help with the pitting edema on my ankles.

I am just going to take it all one day at a time. Hope for the best and keep on pushing on. I figure it is what it is and my worrying about it or borrowing trouble will not make a difference and only make things worse. If this is going to get bad, then I dont want to spend the time I have now before it does worrying about what I will be dealing with then. I will just have to take advantage of the what I have now and make sure things are in place to cope if they do go south suddenly.

But hey, did I mention my rash is much better!!! lol Atleast that was a good thing that came out of my visit to the dermi. I also think and will know for sure next week at my rheumi appt that the diagnosis that will be on my record will be MCTD, he said there is no reason to put it down on record if we dont have to. It will only make me uninsurable and the treatment would be the same no matter what. He said he will be sending a letter to my rheumi and advising him of his findings and make some follow up testing recommendations. I dont care what they call it on paper as long and they are honest with me to my face. I am not going to be filing disability any time soon (atleast I hope not).

I will do some surfing on the doctor you mentioned and see what I can find.

thank you for your help,
Erin
Dallas TX

 
Old 10-15-2007, 08:35 AM   #9
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: scleroderma

Quote:
Originally Posted by VeeJ View Post
Erin, The isolated mention I saw about anti-Ro & scleroderma is recent, dated 2007. I think we're both trying to vocalize the same basic question: Does diffuse scleroderma always involve major organs? The piece I saw that suggested that it did NOT always---that there's a range to "diffuse", just as there's a range in SLE.

Are there current books on scleroderma written by specialists for patients? They'd probaby be more helpful than informational articles written by laypeople, meaning more comprehensive & nuanced. If I see anything that fits this bill, I'll post ASAP. Thinking of you, Vee (I had a minor surgical procedure & am laying low today, but should be out & about tomorrow.)
Vee,

Hope all went well with the surgery and you are feeling better.

Erin
Dallas TX

 
Old 10-15-2007, 08:25 PM   #10
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,942
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: scleroderma

Erin, thanks for your thoughts. I think you've got a good approach going with your thinking & applaud it. Stay in touch when you can, OK? I'll have you in my thoughts. Always, Vee

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Scleroderma-Morphea-Connective Tissue Diseases WITH HOPE General Health 2 08-04-2011 01:17 PM
scleroderma k2626 Lupus 9 01-06-2009 09:13 PM
Early Lupus/Scleroderma and LPR - Hypersensitive Esophagus? thinkfast Acid Reflux / GERD 7 07-22-2008 08:43 PM
diagnosed with scleroderma Georgianna1990 Rare Disorders 7 02-26-2008 02:00 PM
Very high ANA titer results and nucleolar pattern: lupus or scleroderma? thinkfast Lupus 10 01-06-2008 06:57 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



VeeJ (172), ladybud (43), AngelicBrat (16), luca689 (7), ksp (6), neveragain444 (6), luvinmusiq (5), Daisygrace (4), brooklyngirl (4), paperbgprinces (3)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (905), Titchou (848), janewhite1 (823), Gabriel (759), ladybud (754), midwest1 (669), sammy64 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 04:43 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!