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peachyhugsgina
12-17-2009, 07:51 AM
Hi,
I am not sure exactly what is going on in my world of autoimmune disorder. I recently started seeing a new rheumatologist. She , of course, did her own complete blood study work up. The antiproteinase 3 level came back elevated. She said that this test was indicative of a vasculitis, or a flare of my systemic lupus. Today, she opted to start me on methotrexate injections. I know that this is a drug that is chemotherapy like and will suppress my immune system.
I suppose I should give you guys a quick overview of what has been going on with me. I was diagnosed with fibromyalgia in 1997, and sle.. lupus in 2005. I have been on a maitenance dosage of plaquenil since diagnosis, and basically been in remission, until now.
Last fall, a year ago, I developed a purplish lacy rash on both arms, my abdomen, and both legs. My doctors, rheumatologist and primary care at that time.. both are different docs now due to having moved the past year, thought that the rash was a reaction to some of the medication I was taking, so I was taken off all meds and slowly re introduced to them. with absolutely no change in the rash on my body.
The past 3 months, I have had increased fatigue, the type that overwhelms you, severe joint pain.. especially feet, ankles and left knee, occasionally an ulceration in my nose that only an antiviral seems to help control.. I also have been diagnosed with chronic epstein barr syndrome.. high epstein barr titers.
The rheumatologist I am now seeing says she feels that due to my fatigue, joint pains, and blood tests results.. that I am in a lupus flare and we need to treat it more aggressively with the methotrexate.
I have been reading about WG and feel that I have some but maybe not enough of the symptoms for diagnosis. What do you guys think?
My symptoms are
night sweats
fever
joint pain
fatigue
occasional vascular rash
all over body itching

Thanks for all your help. Also, if you have any information on injectable methotrexate or personal experience with this treatment, I am truly interested.
Thanks
Peachyhugs
Peachyhugsgina

elephant
12-17-2009, 08:46 AM
Hi Peachyhugsgina, Usually Wegeners disease starts with respitory symptoms ( stuffy nose, runny nose, bleeding of nose, crusting, coughing, shortness of breath), but everyone is different. Mine was sneaky 30 years ago and the doctors didn't know what it was but my symtoms started with arthritis(painful), fevers, weightloss, red eyes and then kidney failure. I was going down hill pretty fast and was admitted to a children's hospital in chicago. Had a kidney transplant 1989 and was on prednisone and cyclosporine for 20 years and I still had symtoms of chest pain, tired, night sweats,headache, arthiritis and alot of respitory sinus problems. Anyways I started to go down hilll 2008 and finally diagnosed with Wegeners. You mentioned that your itching. It could be allergic reaction or how is your kidney function? Wegeners attacks the kidneys and I know it does with Lupus too.
Wegener's is a tricky and sneaky disease. I would make an appointment to a Wegeners specialist. I live in South Carolina and drive 10 hrs to see Dr Langford at the Cleveland Clinic in Ohio. There are four good Vasculits clinics in the United States. Hope for the best for you! Welcome!:D

Jack
12-17-2009, 09:01 AM
Hi Peach,

Wegener's presents with a whole host of symptoms in random combination and can appear very much like some other auto immune diseases. Elevated ANCA readings are an indicator, but far from definitive. The most accurate diagnostic tool is probably biopsies of the affected areas. These will show the presence of granulomas (or sometimes not!). It can be a hard one to pin down.

The most common problems associated with Wegener's are probably - sinus trouble, joint pain, skin lesions, lung involvement, renal failure, but the list goes on.

Treatment is a combination of immune suppressants and steroids.

As elephant has said - make sure they check your kidney function!

Doug
12-17-2009, 10:09 AM
Also, read up on WG, and make sure you have a doctor who has a depth of experience dealing with WG, Depending on where you live, that may be difficult, but, for reasons elephant and Jack note, this disease is tricky, so you don't want a sincere but inexperienced doctor experimenting on you: if you have WG, your organs are under seige (kidneys and lungs in particular, but it is a disease that affects everything). Many lose some kidney function or kidneys due to WG, so it isn't a disease to mess around with. Please check out this website for additional information on questions to ask your doctor, how to locate the specialists you need. If it turns out you have some other form of vasculitis, this website also has information on those.

http://vasculitisfoundation.org/

Sangye
12-17-2009, 01:06 PM
Hi Peachy,
I'm glad to meet you!

I think you need to see a Vasculitis specialist as soon as possible to really find out what's happening. I had only severe joint pain for 8 months-- no other symptoms until my lungs became involved.

Your case is going to be complicated by the high titers of Epstein-Barre virus, because suppressing your immune system can allow EBV to run amok. This is another reason why you must have a Wegs specialist oversee your care. And having lupus, too-- you really need an ultra-expert involved. I think Mayo Florida is the closest to you? If not, please be willing to travel to a major vasculitis center. You won't regret it.