Roberta

[Roberta]

Hello
Not sure if I am doing this right---if this is repeated bear with me, my first time. I was diagnosed with c anca vasculitis, wegeners in dec 2010, effects my kidneys! I have 25=35% funcion now. I think I had it for about 2 years prior, undiagnosed, just kept checking for this and that! I did have micrscopic blood and protein in my urine, and b/p started going up a year ago with the purpura rash on legs off and on, as well as increasing joint pain last year. Started taking cytoxan 150 mg and prednisone 80 mg daily as well as bactrim daily dec 18, 2010. Does any one else get the shakes, peripheral neuropathy, or what I call body shivering at times. Are your stools real dark at times??? My cobra health insurance runs out also April 2. I live in Elkton, MD, age 58, female. Any advice will accept!!!

[Sangye]

Hi Roberta, welcome to the group. Shakes on high dose pred are normal. Dark stools are not okay and can indicate GI bleeding. This is very serious. You need to get that checked asap.

My best advice is to get to JHU for treatment since they specialize in Wegs. You really need a Wegs specialist. Regular docs are not skilled enough to know how to treat Wegs properly. Have you been on 80mg pred since Dec 18??

[elephant]

Roberta, I agree with Sangye, if you have been on prednisone 80 mg for that long you could be having some bleeding in stomach or intestine. Are you on something to protect your stomach like prilosec or nexium..ect? Please get to a Wegs specialist very soon.

[drz]

Hello
Not sure if I am doing this right---if this is repeated bear with me, my first time. I was diagnosed with c anca vasculitis, wegeners in dec 2010, effects my kidneys! I have 25=35% funcion now. I think I had it for about 2 years prior, undiagnosed, just kept checking for this and that! I did have micrscopic blood and protein in my urine, and b/p started going up a year ago with the purpura rash on legs off and on, as well as increasing joint pain last year. Started taking cytoxan 150 mg and prednisone 80 mg daily as well as bactrim daily dec 18, 2010. Does any one else get the shakes, peripheral neuropathy, or what I call body shivering at times. Are your stools real dark at times??? My cobra health insurance runs out also April 2. I live in Elkton, MD, age 58, female. Any advice will accept!!!

This all sounds too familiar and typical of Wegener's disease and treatment you are receiving except for dark stools. it can happen with Wegener's but indicates a serious problem that needs to be addressed ASAP. Does your lab work indicate any improvement yet? Do you feel any better? Sorry about the insurance since that will create extra unneeded stress. Is there any agency that can help you with that issue? Talk to your clinic insurance department and social worker and ask for suggestions since they often know what resources might be available. Where are you receiving care? Do they have experience in treating Wegener's or are they consulting with anyone experienced in Wegener's? Things should get better for you as treatment progresses so hang in there.

[drz]

UNC Kidney Center (http://www.unckidneycenter.org/kidneyhealthlibrary/anca.html)



The symptoms of vasculitis include flu-like symptoms such as fever, body aches, joint and muscle pain. There can also be reduced appetite, and weight loss. Symptoms can appear in the particular body part that is affected by the disease. The chart below explains some common symptoms that are specific to the affected body part.

Affected Body Part

Symptoms

Kidney Brown, tea-colored urine from blood leaking into the urine Joints Joint pain or swelling Lungs Heavy cough, often mistaken for pneumonia, coughing up blood Skin Red or purple spots , itching, hives, rash Sinus/Nose Runny nose that get worse and worse, nose pain, trouble breathing through nose Trachea Shortness of breath Gastrointestinal Tract Stomach pain, or blood in stool Eyes Red, painful eyes, blurry vision, headaches Ears Hearing Problems or Hearing Loss