Sierra Sage

Can you read this drug label?

2012-06-15T09:09:00.001-07:00

How confident are you that you take prescription drugs correctly? The instructions on the bottle's label may not seem to be hard to follow, but more than 500,000 Americans misinterpret them every year.

We wanted to do a "spot check" and see for ourselves how different drug labels, bottle warnings, and consumer drug information leaflets compared with one another. So Consumer Reports Health staffers filled prescriptions for 5 milligrams of warfarin at five chain pharmacies near our offices in Yonkers, N.Y.: Costco, CVS, Target, Walgreens, and Walmart. The drug warfarin, also known by the brand-name Coumadin, is a commonly used generic blood thinner, which can cause dangerous bleeding if taken incorrectly.

The rest of the article is here.

What I have to say:

This particular problem could be dangerous when you have to take strong medications to keep your immune system under control. If you can't read the directions, make sure you talk to the pharmacist (or call the doctor's office.)

Also check your meds before you take them. Make sure the labels are correct and that you are taking the right amounts of the meds. If there is anything strange, take it back to your pharmacy. Even though the meds are prescribed, they are dangerous if taken in the wrong way or the wrong amounts.

Rhino-sinusitis: Causes and medical treatment

2012-06-11T09:53:00.000-07:00

Mr James W Fairley BSc MBBS FRCS MS
Consultant ENT Surgeon

What is rhino-sinusitis?

Rhino-sinusitis is the combination of rhinitis and sinusitis.

Rhinitis (Rye-NIGHT-iss) is inflammation of the lining of the nose.
Sinusitis is inflammation of the sinuses.

As part of the same air passages, and lined by the same mucous membrane, the nose and sinuses tend to be affected by the same problems. Rhinitis is commoner than sinusitis, and causes similar symptoms. Most cases of sinusitis start off as rhinitis, so we usually get rhinosinusitis rather than pure sinusitis. Nearly all cases of sinusitis are in fact rhinosinusitis.

The rest of the article is here.

What I have to say: Rhino-sinusitis is a common indicator of Wegener's Granulomatosis. When I was first being treated, my nose would drip with a thin secretion. Since inflammation is a part of Vasculitis, and inflammation can cause rhino-sinusitis, it seems to go hand in hand with our disease. This article has some really useful information to keep you nose and sinuses in good shape.

New treatment of subglottic stenosis due to Wegener's granulomatosis, Acta Oto-laryngologica, Inform

2012-06-08T08:08:00.000-07:00

The abstract is here.

What I have to say: This is some good news for those who have this type of problem. I don't have this problem specifically, but I have heard that it is very scary when the throat closes and the patient can't breathe.

Stress triggers disease flares in patients with vasculitis

2012-06-07T08:37:00.000-07:00

Study shows psychological health important to controlling Wegener's granulomatosis

In patients with a devastating form of vasculitis who are in remission, stress can be associated with a greater likelihood of the disease flaring, according to a new study by investigators at Hospital for Special Surgery (HSS).

This is the first study to suggest that mental health is a risk factor in patients with vasculitis, a group of autoimmune disorders characterized by the inflammatory destruction of blood vessels. The study, in a form of the disease known as Wegener's granulomatosis (WG), will be presented on Nov. 8 at the American College of Rheumatology's annual meeting.

The rest of this report is here.

What I have to say: The patients have been saying that stress is a factor in flares since I got the disease nine years ago. We have been telling each other to keep the stress under control so I am glad to see that the HSS is now giving credence to this idea.

Vasculitis PSA - Angel of Mercy

2012-06-06T10:17:00.001-07:00

Radio Interview about Vasculitis Foundation Canada

2012-06-04T10:53:00.000-07:00

The link to the interview is here.

What I have to say: Vasculitis strikes many different types of people in many countries. I am always pleased to hear about the efforts of other foundations to help people with these diseases.

The impact of vasculitis on patients` social participation and friendships

2012-06-01T09:54:00.000-07:00

CONCLUSIONS:
The unique circumstances associated with a rare chronic illness like vasculitis can create significant barriers to friendships, including loss of these relationships. Interventions designed to help patients cope with the social impact of vasculitis are implicated, especially if they increase patients` ability to engage in dialogue about their illness with their friends.

The abstract is here.

What I have to say: This conclusion about illness and friendships (or even marriage) is something we see every day in the Vasculitis groups where we talk about our families and how friends and family deal with the disease. Many times these people are in denial about how much a WG patient can be social. It is an auto-immune disease, and many times it can be dangerous for a WG patient to be in large groups of people who carry all sorts of viruses and bacteria.

Even worse this study would have the same conclusion for all sorts of injuries and diseases. It is a sad fact that most people don't want to be reminded of their mortality.

The internet with social groups have been a blessing to us, and to others who can get together and talk about the problems caused by disease.

Dr. Kathy McKinnon talks about her perspective on diagnosing and treatin...

2012-05-29T11:36:00.001-07:00

Mimics of Vasculitis

2012-05-28T11:07:00.000-07:00

Core lecture from the University of Arizona.

What I have to say: Vasculitis can mimic many other disease (and vice versa). There is some good information here.

Can you take too much Omega-3 fatty-acids?

2012-05-25T09:31:00.000-07:00

Omega-3 fatty acids are essential fats we need for optimum health. Unfortunately, most Americans don't get adequate amounts of omega-3s in their diets, and as a result are more likely to develop cardiovascular disease, cancer, inflammatory disorders, and mental and emotional problems.

The rest of Dr. Weil's answer is here.

What I have to say: In paraphrase of Dr Weil's answer, unless you are eating fish daily or exclusively (think Eskimo diet) you are probably NOT getting enough Omega-3 fatty-acids. I take two to three supplements a day to keep my inflammation under control for my disease. I probably don't eat enough fish or walnuts either, which is something the good doctor recommends.

Rheumatologist examination

2012-05-22T09:19:00.000-07:00

Dr. Scully is my rheumatologist in Reno. If you ever need to go to a good doctor for your Vasculitis needs, this is the doctor to go see. He is there for his patients and he discusses treatments with you.

Yesterday was my appointment. I have been having some ups and downs lately with some of my meds. My doctor realized a few months back that I was getting anemic. I couldn't tell because it was a slow decline, but I hadn't felt that good in months.

I was taken off azathioprene and put on Cellcept. I started to have some problems, so I had a few blood tests that didn't show much. After talking to my rheumy, we came to the conclusion that I might be having drug interactions with my new drug and my high blood pressure meds. I had started using niacin because my cholesterol was high and because I couldn't use statins. My primary doctor, Dr. Horgan, also a very good doc, understood my concerns. He took me off of two of my meds entirely and then reduced the dose of my third med.

So far I am seeing an increase in energy. I still have cramps, but I am learning to take more magnesium/potassium and calcium. I have to juggle it because calcium can bind with Cellcept and prednisone.

The really good news for me is that my rheumy decided at this appointment to let me wean down my prednisone. I have been on 5 mg. for several years. I have some skin problems due to the long prednisone use.

It will take months to wean. I may not be able to wean completely, but it will be great.

The other great news is that the creatinine level dropped again with the protein leak. It is looking up.

ANCA Vasculitis & Antibodies

2012-05-18T08:15:00.002-07:00

Anca vasculitis & anti gbm

View more PowerPoint from Nephrology, NSLIJ

What is ANCA Associated Vasculitis (AAV)

2012-05-17T10:28:00.000-07:00

ANCA Associated Vasculitis is a type of autoimmune inflammation caused by auto-antibodies. Normal antibodies are parts in the blood that are produced by the immune system to fight infectious agents (such as bacteria). Auto-antibodies are abnormal antibodies that attack one's own cells and tissues (autos = self). ANCAs are auto-antibodies that attack the thick liquid residing between the cell membrane holding all the cell's internal sub-structures (cytoplasm), except for the nucleus or internal portion of the cell, of a certain type of white blood cells called neutrophils. ANCA stands for Anti-Neutrophil Cytoplasmic Auto-antibody. When ANCAs attack these neutrophils, they cause the white blood cells to attack the walls of small and medium vessels in different tissues and organs of the body.

ANCA Associated Vasculitis encompasses Granulomatosis with Polyangiitis (GPA, formerly known as Wegener's Granulomatosis), Microscopic Polyangiitis (MPA), Churg-Strauss Syndrome (CSS) and Renal (Kidney) Limited Form.

The website is here.

The mission of this foundation is to find a cure for AAV - WG, MPA, CSS, and renal forms. Anyone who is funding research into the cures for these diseases is a thumbs up in my book. We have to few medications and at this time there is NO cure for this disease.

Strawberry gingivitis as the first presenting sign of Wegener's granulomatosis: report of a case.

2012-05-16T08:41:00.000-07:00

A case of strawberry gingivitis as the first presenting sign of Wegener's granulomatosis affecting a 50-year-old Malay male is reported here.

The abstract is here.

What I have to say: WG can affect multiple systems in the body. In my case my first presenting symptom was conjunctivitis. Others have sinus problems and allergies. So if the doctors are stumped, suggest that they check you for Vasculitis.

Tumor of the heart in a young woman; a rare manifestation of Wegener granulomatosis

2012-05-15T09:36:00.001-07:00

Summary

Wegener granulomatosis may rarely present with tumor masses that are in areas not typically involved by the disease. Although some cases have an associated positive anti-neutrophilic cytoplasmic antibodies, other cases do not, especially those of the limited form. To prevent misdiagnosis and ensure prompt treatment, it is extremely important to consider Wegener granulomatosis even in cases without the classic clinical findings. We report a case of a 19-year-old woman with no prior significant medical history who presented with persistent ventricular tachycardia and a papillary muscle mass in her left ventricle which upon excision and tissue evaluation demonstrated histologic changes of Wegener granulomatosis.

You can find the abstract here.

What I have to say: Wegener's Granulomatosis (or GPA) can manifest itself in many different ways. This one is new for me. If you can't get a good diagnosis or your diagnosis keeps changing to fit the symptoms, you might consider asking your doctor to check if you have WG (or at least get someone to do a differential diagnosis.) If you are C-ANCA or P-ANCA positive, then you are likely to have one of the Vasculitis diseases. If you aren't, then it might mean that you need a differential diagnosis. Just because you are ANCA negative, does not mean you are safe.

We have several WG diagnosed patients who are not ANCA positive.

How Energy Shifts Lead to Systemic Illness

2012-05-14T08:57:00.002-07:00

by Rainer H. Straub, MD

Why do chronic inflammatory diseases (CIDs) such as rheumatoid arthritis (RA) or systemic lupus erythematosus affect the whole body and produce myriad debilitating and disabling symptoms that make people sick? Is this clinical pattern of systemic involvement an unfortunate byproduct of sustained inflammation or, in an unexpected way, is it an adaptive program positively selected during evolution?

The rest of the article is here.

What I have to say: When the immune system is overactivated (auto-inflammation) then strange things happen to the body. This article explains what happens to certain energy systems in the body.

In my opinion it doesn't explain why the autoimmune cells are activated. It might be a step in the right direction though.

Patient perceptions about illness self-management in ANCA-associated small vessel vasculitis.

2012-05-05T10:08:00.001-07:00

Thorpe CT, DeVellis RF, Blalock SJ, Hogan SL, Lewis MA, DeVellis BM.

Source

Health Innovation Program, Department of Population Health Sciences, University of Wisconsin, E5/724 CSC, 600 Highland Avenue, Madison, WI 53792-7685, USA. thorpecarolyn@gmail.com

Abstract

OBJECTIVES:

To characterize patient perceptions, related to eight self-management behaviours relevant for adults with ANCA-associated small vessel vasculitis (ANCA-SVV), and to determine if these perceptions were associated with performance of each behaviour.

The rest of the abstract is here.

What I have to say: I think I actually participated in this study. They had two questionnaires that we had to fill out about 3-6 months apart. Sometimes my memory falls apart when it deals with this type of stuff when I was under some heavy medication.

On the side of the patient, I believe that we do know what we should do to keep ourselves healthy. It is hard to figure out what is a side-effect and what is our new normal. Plus we are under medication that messes with our memories so sometimes it is hard to remember if we took a needed medication or not, which is why I try and keep a record or at the very least I put my meds in a weekly pill dispenser. It really helps and I don't have to remember.

Plus our energy is now at minimum, which means that if we take a shower then we might not have the energy to take a walk. Or if we cook that meal, we won't have the energy to vacuum the floor. We have to use priorities. What takes a normal person minutes can take hours for us.

So yes, we know what we need to do, we have the drive to do it, but the energy is lacking.

Development of morbidity and mortality in ANCA-associated vasculitis

2012-05-04T08:34:00.000-07:00

The outcome of ANCA (antineutrophil cytoplasmic antibody)-associated vasculitis (AAV) has been significantly improved due to the combined use of cyclophosphamide (CYC) and glucocorticosteroids. Recent studies demonstrated a normalization of life expectancy for several subgroups of AAV patients.

The rest of the abstract is here.

What I say: As it says in this abstract, CYC and prednisone have stabilized patients; however, infection and cancer due to CYC use has caused problems for WG patients. There is a limit that the body can take when taking CYC.

Just something to keep in mind when you are taking meds.

My body is a circuit board

2012-05-03T10:11:00.000-07:00

But last fall, the St. John's woman learned she had something else, something that was attacking her organs and could kill her.

"My body is a circuit board," the 33-year-old says. "You never know when it's going to short out. That's how I feel with this disease."

The rest of the article is here.

What I have to say: Finding and treating WG is very critical for helping a patient to survive. In my case I also had kidney failure, but instead of dialysis, I was able to keep my kidneys although only in fair shape by the use of hemopharesis.

This woman was really lucky to have such a dedicated staff. With so many systems crashing, she could have died.

It is important to have the right doctors and to have the right medication to survive this disease. As I keep saying, at this time there is no cure for the disease. In the future I am hopeful that the new genetic research can help cure it through possible gene manipulation as long as someone will be willing to research our disease.

The Vasculitis Foundation does give a small amount of money to researchers to help us find new drugs and the cause of the disease. So far we are a small community and for some reason, except for House TV drama, no one seems that interested in our health.

We are the invisibles. Please help us in bringing Vasculitis to the fore-front of the fight for health. Plus Vasculitis disease is not cancer. It is an auto-immune disease that attacks our blood vessels and damages our organs.

Is Vitamin B12 Deficiency an Autoimmune Disorder? Yup.

2012-05-02T10:26:00.002-07:00

If you’ve been diagnosed with vitamin B12 deficiency, you’re probably wondering, “How did this happen?” Unless you’re a vegan or a gastric bypass patient, it’s likely that vitamin B12 deficiency resulted from an autoimmune disorder that causes pernicious anemia.

The rest of the article is here.

What I have to say: Lately several members of our Vasculitis group have been having problems with anemia caused by the medications used to control the disease. One of the treatments besides a blood transfusion has been Vitamin B12 shots.

I have learned from my doctors that B12 deficiencies are common in auto-immune patients. So check this one out if you have persistent anemia.

Vasculitis Awareness 2012

2012-05-01T08:46:00.001-07:00

Introduction from Joyce Kullman, Executive Director of the Vasculitis Fo...

2012-04-30T11:47:00.001-07:00

Wegener's Granulomatosis on cure.com

2012-04-26T11:29:00.000-07:00

Wegener's Granulomatosis - A multisystemic disease of a complex genetic background. It is characterized by inflammation of the blood vessels (VASCULITIS) leading to damage in any number of organs. The common features include granulomatous inflammation of the RESPIRATORY TRACT and kidneys. Most patients have measurable autoantibodies (ANTINEUTROPHIL CYTOPLASMIC ANTIBODIES) against neutrophil proteinase-3 (WEGENER AUTOANTIGEN).

What I have to say: This page on cure.com is a great resource for newly diagnosed patients.

I Should Know

2012-04-18T13:27:00.000-07:00

...that when I am ready to start WWIII that I am having a physical problem with either my health or my meds. This time it looks like some of my meds caused the meltdown. I was getting symptoms. I was having problems with Quest getting my labs to the doctor. It was taking days.

In desperation when I looked at my last pill of the day HYTRIN and realized that I didn't need it, I didn't take it. My symptoms of red patchy skin, mood swings, low blood pressure, and high heart rate subsided.

So I suspect drug interactions. My doctor who called today said my labs looked good. He had no idea what was causing my problems. When I mentioned drug interactions, he agreed. I will be at my primary care physician on Monday and we will be talking about drug interactions and what I need to get rid of in my arsenal of prescribed drugs.

As my hubby said when I told him this afternoon, "this may end up being a good thing."

But You Don't Look Sick.com - Lupus Blog

2012-04-09T11:29:00.001-07:00