ANCA Associated Vasculitis & Still's Disease

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

ANCA Associated Vasculitis & Still's Disease

Postby shadow205 » Sun Nov 14, 2010 08:15 pm

I first came here in 2004 and found the friendliest, most compassionate and helpful people that you could find anywhere. I was concerned about my daughter who had developed Pre-E late in her pregnancy. Before it was over with she went on to develop HELLP & Sheehan's Syndrome. She also had continuing medical problems post part om. It took about a year and a half for her blood pressure to return to normal and for her adrenal gland to begin producing cortisol again. I am not going to go into detail here, it's just to long, her story can be found by searching "shadow205." There are a lot of posts and information.

What I would like to say is that since the time that I posted last about her, she has became pregnant and had a relatively uneventful pregnancy and delivery in February 2009. We thought all was well but she just never seemed to recover from that pregnancy/delivery. In March 2010 she became critically ill and was admitted to the hospital where she spent 32 days. Tests, tests and more tests, they couldn't figure out what was wrong. All of her lab work showed that something was obviously going on but the Doctors couldn't diagnose her. Fever averaged 103, HG 7, Sed Rate High Spleen, liver and one kidney enlarged. Lymph nodes enlarged and all kinds of other things. She had a bone marrow biopsy on her 31st birthday checking for Lymphoma. Thank God it was negative.

What they did come up with though was Autoimmune Disorders. My Daughter has been diagnosed with "Still's Disease" and "ANCA Associated Vascultitis." There is hardly any part of her body that has not been effected. She is currently undergoing chemotherapy infusions monthly and has to take a tons of medicines that can have serious side effects.

Is there a connection between Preeclampsia and Autoimmune disorders? I don't know, but hopefully we will know someday. I do know that my daughter was perfectly healthy until she developed Preeclampsia in 2004 and has never really been well since.
Mother to Amy who had PE, HELLP & Sheehan's syndrome with 1st pregnancy 2004
2nd pregnancy 2009 no complications during pregnany but now battling rare autoimmune disorders, [b]Still's Disease & ANCA Associated Vasculitis. Churg Strauss Syndrom, Sweet's syndrome [Raynaud's phenomenon/b]
shadow205
Registered User
 
Posts: 68
Joined: Mon Aug 16, 2004 10:49 am

Re: ANCA Associated Vasculitis & Still's Disease

Postby catherine » Mon Nov 15, 2010 10:02 am

While preeclampsia doesn't appear to trigger future autoimmune diseases, it tends to foreshadow them. The interaction between your immune system and pregnancy is complicated to begin with because the body has to accept a "non-self" component (aka the baby and placenta) for the nine months of pregnancy. If you have the misfortune to have latent autoimmune issues, pregnancy may place extreme pressure on the system and sometimes the disconnect between what is supposed to happen and what is happening can manifest as preeclampsia or HELLP syndrome. So, what your daughter experienced when she had her first baby may have been a "warning sign" for what hit her more recently. Once she recovered from all of that, things slithered away into the background, waiting for another trigger. It is tough to predict though. Some people find that pregnancy gives them a respite from their autoimmune disease symptoms, while others find that it is "the straw that breaks the camel's back" and that it imposes an impossible physiologic burden on top of their disease.

I'm relieved to hear that they seem to be successfully controlling her disease, even if the therapies are so challenging.
Mom to Finn, Lucy (HELLP syndrome) and Chloe
User avatar
catherine
Forum Moderator
 
Posts: 2832
Joined: Fri Jan 31, 2003 05:53 pm

Re: ANCA Associated Vasculitis & Still's Disease

Postby shadow205 » Tue Nov 16, 2010 08:39 pm

Thanks Catherine. There is so much that is not understood about Autoimmune disorders. My daughter was in the hospital for 32 days and had every test you could think of. The right test finally identified the "ANCA Antibody." The "Still's Disease", well that is a whole different monster.
Mother to Amy who had PE, HELLP & Sheehan's syndrome with 1st pregnancy 2004
2nd pregnancy 2009 no complications during pregnany but now battling rare autoimmune disorders, [b]Still's Disease & ANCA Associated Vasculitis. Churg Strauss Syndrom, Sweet's syndrome [Raynaud's phenomenon/b]
shadow205
Registered User
 
Posts: 68
Joined: Mon Aug 16, 2004 10:49 am

Re: ANCA Associated Vasculitis & Still's Disease

Postby alviarin » Wed Nov 17, 2010 09:43 am

This is coming out of left field, but has your daughter ever been screened for celiac?

I have a relative whose vasculitis improved on a gluten free diet. Previously his doctors had recommended a chemo drug, but after a change in diet he is in much better shape. I know he may be an exception, but I wanted to mention it just in case.
Hypothyroid mom to Connor and Claire
(severe pre-e at 38 weeks & "mild" pre-e at 37 weeks)
& baby Annabelle
(chronic HTN & GD, superimposed pre-e @34 weeks, induction @37 weeks)
alviarin
Forum Moderator
 
Posts: 1626
Joined: Tue Apr 18, 2006 12:56 pm
Location: Texas

Re: ANCA Associated Vasculitis & Still's Disease

Postby shadow205 » Wed Nov 17, 2010 12:48 am

Alviarin, to be honest I don't know. There were so many test for so many things, I kind of lost track. I will definitely look into it though. Thanks for the info.
Mother to Amy who had PE, HELLP & Sheehan's syndrome with 1st pregnancy 2004
2nd pregnancy 2009 no complications during pregnany but now battling rare autoimmune disorders, [b]Still's Disease & ANCA Associated Vasculitis. Churg Strauss Syndrom, Sweet's syndrome [Raynaud's phenomenon/b]
shadow205
Registered User
 
Posts: 68
Joined: Mon Aug 16, 2004 10:49 am


Return to HELLP Syndrome Survivors and Underlying Disorders

Who is online

Users browsing this forum: No registered users and 2 guests