Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Scleroderma and Lupus


  • Please log in to reply
3 replies to this topic

#1 AloneintheUniverse

AloneintheUniverse

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 25 June 2016 - 09:32 AM

Hey everyone. I new here and super confused so bear with me.

 

I'm currently in an autoimmune nightmare. The question isn't do I have an autoimmune disease, but rather which one/ones? I'm going insane. My ANA is positive 1:640 both speckled and centromere. (Is it weird to have 2 patterns?) My SCL-70 is positive as well. My CRP is high even though I was actually on prednisone at the time. I also had elevations of a protein marker for inflammation. And I'm anemic. So we know biologically something is going on.

 

I'm also in constant pain. I wake up in the morning and it feels like a truck ran over me. My joints hurt and get swollen and sore. I'm exhausted all the time. I have dysmotility in my esophagus which is driving me insane and along with GERD. I have Raynauds. But I don't actually have skin hardening. So while the doctors thought it was scleroderma, they were hesitant to make the diagnosis official. Regardless since my mom has diffuse scleroderma and I have all these symptoms it was being treated as such.

 

Except now my body has decided to add extra symptoms. I'm in hives constantly. I was on prednisone and it helped somewhat but it didn't stick. The hives came back. All over my body. Being out in the sun makes it so much worse. Plus after being in the sun, the next day I'm in double the pain. It's possible I've been getting a faint malar rash. The doctor mentioned it looked like it might look like one when I was there last week. So the doctor said that it might actually be lupus.

 

Basically I'm super confused. I don't have a clue what my body is doing. I've been on plaquenil since October. I just switched my celebrex to meloxicam about two weeks ago but I'm not having major relief. 

 

So my questions are: Can I have both? Is it common? Does anybody else have both? Or does anyone at least have any suggestions about to navigate this stuff? And finally does anyone have any suggestions to at least help deal with the symptoms this disease is throwing my way?

 

Thank you for reading this and in advance for any replies,

 

Alone



#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 25 June 2016 - 10:10 AM

Hi Alone,

 

Welcome to Sclero Forums.  I'm sorry you have confusing symptoms and diagnoses.  It's actually fairly common for lupus and scleroderma to occur in overlap, or for either disease to occur in overlap with other diseases.  It's common for both diseases to take many years to be diagnosed, and for them to also be mistaken for each other, too.

 

I have multiple autoimmune syndrome (MAS) so I know how confusion can reign supreme as symptoms and bloodwork change. It's also common for relatives of people with autoimmune disease to exhibit antibodies and symptoms of any autoimmune disease, without necessarily ever getting a full-blown version of it.

 

You're not exactly alone in the universe anymore, since millions of people worldwide have autoimmune and connective tissue diseases, and millions are also in a quandary as to their diagnosis -- typically, for many years, as the ailments are so difficult to sort out and diagnose. Plus, even years later, the diagnosis can still be subject to change, or even for the illness to go into remission.

 

Anyway, welcome to the forums. You can relax now, not feel so alone, and let go of the confusion. It's normal for this to be confusing and neither you nor your doctor are doing anything wrong.

 

:hug-group:


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.

#3 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 25 June 2016 - 01:43 PM

I know it is confusing, frustrating and painful. After 12 years I feel like you but having this forum makes me feel less alone. Keep posting for as you share and ask questions we all learn. Welcome.

miocean
ISN Artist

#4 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,616 posts
  • Location:West Sussex

Posted 25 June 2016 - 08:46 PM

Hi Alone,

Welcome to these forums!

I'm sorry to hear that you've been experiencing so many worrying and confusing symptoms; not knowing the true cause and not having a diagnosis to deal with can be one of the worst scenarios. Unfortunately autoimmune diseases are a minefield of confusion, as the symptoms vary so much from person to person and they are notoriously difficult to diagnose.

As Shelley has advised, it is fairly common for autoimmune diseases to exist together in overlap and therefore exhibit symptoms of several autoimmune diseases. We do recommend that our members, if possible, consult a listed scleroderma expert, as complicated autoimmune diseases do require specialist knowledge and expertise.

Now that you've joined our community, please do keep posting and you'll find lots of help and support from our members.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)