THE WAKEUP CALL

As I said in my last blog, I was really close to being prescribed another drug for my worsening CNS symptoms. And then I had a serious reaction to wellbutrin. It was a wakeup call!

I doubt I would have stopped antidepressants and regained my mind if I had not gone through the experience of feeling suicidal. This feeling set off alarm bells in my head.  It happened on a weekend so I was left to my own devices. This is good because it is unlikely I would have got answers from my doctors or pharmacists.

 I got on the internet and found out that the drug could be causing the symptoms – suicidal thoughts, confusion, short term memory problems, and the lack of coordination. I also learned that someone with a family history of bipolar should not have been prescribed the drug.

This shocked me to the core! I then realized that I had to verify everything to do with my healthcare. I started to look at all of the prescriptions I was taking.  It was easy to find relevant prescription drug information on the internet and I would highly recommen

d visiting www.drugs.com and the US government website www.fda.gov/drugs.  I could not believe that the doctors and pharmacists did not know this information. The individual drug interactions are known. Out of 8 drugs, I had 5 serious drug interactions going on. But this is a whole other story for another blog.

It was my review of all of the drug interactions that altered my medication plan. One of my biggest risks of having CNS lupus (inflammation of the blood vessels in my brain) is having a stroke. One of the drugs I am taking is plavix which makes my blood less sticky and less likely to cause a blood clot.  Can you imagine my dismay when I found out that this drug has been rendered useless because I was also taking Prozac, an anti-depressant? Thousands of dollars down the drain over 8 years, unmitigated risk and not one professional pointed this out.

After bringing this to the attention of my doctors, they suggested that there was another antidepressant that I could take that would not interfere with the plavix. When I went to pick up the prescription from the pharmacist, he cautioned me to stop the Prozac for a period of 6 weeks before starting another antidepressant. I heeded his advice since I was not eager to repeat the suicidal idealization experience -besides this was going to be the third differenct antidepressant taken in just over 3 months.

About the same time, I spoke to a tennis friend who is a pharmacist. He said that I needed to stop taking most of the drugs in order to get over all of the drug interactions.  He said that normally someone is hospitalized and taken off all of the drugs. Then they are reintroduced say 2 rather than 8 medications.

Hospitalization was not an option. I knew I had to wean myself off of the antidepressants. It would have been best if I had received advice from a psychiatrist but I was several months away from being able to see one. I planned and executed my own withdrawal scheme. My experience of withdrawal is described in my next blog - Antidepressants Caused my Zombie State.

A DECADE OF FOG

A DECADE OF FOG

As I said in my last blog, I have just recently recovered from a decade in a fog. And I feel great!

Contrast this to a decade ago when I was a prescribed a serious overdose of antidepressants – more than enough to knock out even a depressed elephant. 60 mgs of Prozac and 150 mgs of trazadone  – all of this for a reasonably slender woman. The studies show that 20 mgs of Prozac treats most people with major depressive disorder. http://www.rxlist.com/prozac-drug/indications-dosage.htm.

The prescription was written to treat depression which could cause difficulty concentrating, and memory problems. It was believed that my cognitive problems could be caused by depression rather than CNS lupus. I never had symptoms of crying, loss of enjoyment of favourite activities, or sadness.  However, I was started on a cocktail of drugs that sent me into a downward spiral.  But then things got too complicated to be able to distinguish what was causing which symptoms.

 I had other difficulties like trouble speaking, clumsiness, confusion, fatigue, headaches, pain and sleeping 12 hours a day. And the numerous brain lesions showing on numerous MRIs proved that there was an inflammatory reaction going on within my brain. Thus it was not just depression that was causing the cognitive difficulties.

Over the last decade I slowly cut back on the antidepressants and my cognitive functioning started to improve. At the same time, I took chemotherapy drugs which stopped the development of new lesions on my brain. The drugs taken to combat my overactive immune system were credited with my improving health or, at least, no further deterioration.

But then my brain started to go on another downward trajectory last September. This happened when I replaced one antidepressants medication with another.  I started to take another anti-depressant called wellbutrin. It was billed as causing fewer sexual side effects and I had finally clued into ones sex life does not go on forever so I should pay more attention to it. Once again I was given too high a dose of antidepressants. I was prescribed three 100 mg of the slow release Wellbutrin to take once a day. According to all the published sources this exceeded the maximum dose at one time. Even 300 mgs spread out throughout the day was a dose that sets off a warning for US pharmacists.

As the fall progressed, I got worse. My short term memory was getting dangerously impaired. I could not keep track of who was serving in a tennis game, not to mention the score. When I could not recognize the host of a neighbourhood party a week later, I thought a room on the Alzheimer floor at the local care facility would soon be my new home. I fared very poorly playing brain games with my young nephew. But it was the neuropsychiatric assessment which proved my brain capacity was sliding when I performed worse than the previous test a few years before. 

At this point, my rheumatologist was evaluating whether to place me on a new drug to treat the worsening CNS lupus symptoms. Thankfully, he was being cautious since the new biologic drug, he had in mind, could be fatal. And he needed to line up the proof that I was still not better despite having taken cyclophosphamide, Imuran and methotrexate. He needed to complete paperwork to justify to the Medical Services Plan why I needed to receive this very expensive drug.

You probably have heard about the new biologic drugs available to treat people with autoimmune diseases.  You may have seen the television advertisements that list a zillion side effects and you conclude that someone must be desperate to even consider taking such a drug. Well, yes I was at this point. It seemed like it was either a new drug or soon I would be checking into my new home – one of the locked units for the demented patients at a care facility.

In November, my rheumatologist was waiting to hear from my neurologist. And my neurologist was waiting to hear from the psychiatrist who I had asked to see. However, this neurologist/psychiatrist specialist in CNS lupus was not accepting new patients. It then fell onto my family physician to make a referral to another psychiatrist. She said that it would take more than 6 months before I could get a referral.

Then the precipitating event happened. To find out more read the next blog – The Wakeup Call.   

A DECADE LATER

58 years old! It has been a decade since I was first diagnosed with lupus. I have fared well. I can play tennis, cook a holiday meal, dance to the golden oldies, decipher fact from fiction and write blogs. I am doing better than I was a decade ago and finally emerging from a semi-coma. Well, not literally but that is what it feels like.

I can talk easily again – at a regular speed and at an audible level. The speed of my thinking has increased so significantly I have had to ask friends whether they think I am becoming manic. They have assured me that I have just become normal again.  In comparison to a few months ago, I am quick with the wit, aware of my surroundings, and more perceptive of my feelings and those of the people around me.  I am interrupting people less because I can remember what I want to say until after the other person has finished speaking.  

Being able to experience emotions again does come with a downside.  It does hurt more when a “friend” tells you that she thinks that you are a hypochondriac.  Doesn’t she understand that all of these weird health problems happen to someone with lupus? And when your sister and children blame you for their problems, you feel the rejection and anguish.

Experiencing grief and anger is so much more intense.  My blood boils because my oldest sister has been medically neglected in a “care facility” - this has literally raised my blood pressure. And my discomfort at being hoodwinked into believing the prescription drugs provided benefits that were worth sacrificing the joy of sex for so many years is strong. There is safety in being drugged into “unfeeling” but it means that you miss out on the essence of life.

And then there is the perception of time. This seems paradoxical but time has slowed down. Maybe it is because I have so many more hours in the day because I am not sleeping and I am so more efficient in everything I do. The thought of being bored has even crept into my mind.  

So for now, I will go back to my blogging. I will try to ignore that most of the people I know don’t want to be hear about healthy living.  I will attempt to tone down my level of proof provided to augment my arguments and let my sources speak for themselves

My next blog discusses how I emerged from what was thought to be lupus fog.

 

Salt in the wound? Government won’t support legislation to reduce sodium consumption

Salt in the wound? Government won’t support legislation to reduce sodium consumption.

This position of the Canadian Health Minister is incredibly foolish! After all of the support from industry, doctors, Health Canada officials in favour of this action, how can she vote against it? When she became the minister surely she was told that her responsibility was to look after the health of Canadians. If she swore to fulfill this duty and now has changed her mind then she should resign. If you want to see more information about the dangers of salt go to my blog Sue's Lupus Blog "Is the Salt in Your Diet Killing You?"http://howtosurvivelupus.blogspot.com/

BE AWARE OF MEDICATIONS CONTAINING ACETAMINOPHEN

PRODUCTS CONTAINING ACETAMINOPHEN

                                                               
 

Which one of us does not pop a pain killer when we have headaches, arthritis pain or sore muscles? How about when we have coughs, colds, the flu, allergies, fever, or tooth aches? It is very prevalent for people with lupus, along with all of those healthy people, to take over-the-counter medication. But did you know that you are at risk of serious health problems from taking medicines containing acetaminophen (ACET).

Taking too much acetaminophen can cause liver damage - sometimes serious enough to require liver transplants or cause death. ACET is the leading cause of liver failure in the US.  It sends 56,000 people to emergency rooms each year. Half of those people unintentionally overdosed.

 And just how easy is it to exceed the daily limit of 4000 mgs? Extra strength Tylenol contains 500 mgs of acetaminophen and regular Tylenol contains 325 mgs. Some medicines including ACET contain 650 mgs or even 1000 mgs. In the case of Extra Strength Tylenol , If you follow the dosage instructions of up to 2 tablets every four hours you would consume 6000 mgs (150% of the daily limit) thus overdose.

The Federal Drug Administration working group reviewed the FDA adverse event data base and a large liver failure study and found the liver damage occurs in the range of 5000 – 7500 mgs in 24 hours. The working group recommended that the daily limit be reduced to 10 regular pills (3250 mgs) a day. This  recommendation has not been implemented.

Acetaminophen is known by many other names (APAP, N-acetyl-para-aminophenol, and paracetamol.) It  is widely available in more than 200 medications.  It  is also contained in prescription pain medications such as Vicodin, Percocet , and Oxycodone that are widely used.  In one year, 200 million prescriptions containing acetaminophen were dispensed in the U.S.

 The fact that so many medicines contain acetaminophen increases the danger of an overdose.  “The risk of liver injury primarily occurs when patients take multiple products containing acetaminophen at one time and exceed the current maximum dose of 4000 mgs within a 24 hour period “said Dr. Sandra Kweder, the FDA’s deputy director for new drugs.

Tylenol is just one of 44 brand names of acetaminophen. Additionally, it is found in medicine combined with other drugs.  Some names you may recognize are some forms of Robaxcet  Anacin, Alka-Selzer ,Dimetapp, Sudafed, Dayquil,  Dristan, Robitussin, Excedrine. Midol PMS, Vicks 44 ….. For a complete list see the MedPlus website cited at the end of this blog.

Another consideration is consuming ACET while using alcohol or drugs. It increases the risk of liver damage especially amongst older people who have a lower ability to clear drugs from their systems. For those who consume alcohol regularly, the daily limit of ACET is 2000 mgs a day.  This works out to 4 Extra Strength Tylenol a day.  Some doctors recommend that you should not use alcohol when using any over-the-counter or prescription medicines.

According to the FDA if you drink 3 or more alcoholic beverages a day you should consult with your doctor about a safe dose of ACET. I may be naïve but I think that heavy drinkers are unlikely to bring this up with their doctors. But just think of all the heavy drinkers that take Tylenol for hangovers! The damage caused by ACET is more likely to occur when it is taken after alcohol is metabolized.

Even one overdose of acetaminophen can cause permanent liver damage. Call poison control as soon as possible, in case of an overdose. There is an antidote named N Acetycystein which is most effective if  taken within 8 hours of ingesting the ACT.  Don’t hesitate even if you feel well. The symptoms of an overdose may not appear for up to 24 hours. They include abdominal pain, nausea, vomiting, not feeling well, unable to eat, and a poor appetite.

WHAT ABOUT SAFEGUARDS?

Reducing the amount of ACET in medications

Due to evidence linking it to liver failure, the American Food and Drug Administration has capped the amount of acetaminophen to 325 milligrams per capsule in prescription painkillers. However, they have not followed the recommendations of the FDA working group to also lower the dose of acetaminophen in the over-the-counter products. 

Labeling

4000 mgs is the stated limit on Tylenol bottles but that leaves little margin for safety. There is no mention of permanent liver damage caused by exceeding the limit. This dosage instructions would be more explanatory if it read “1-2 tablets every four to six hours but not to exceed  8 tablets a day or permanent liver damage may occur in a healthy adult.

 In Canada there is no requirement to place warnings on bottles of extra strength ACET. However,  in 2009, Health Canada issued  a voluntary warning for ACET bottles. It reads” taking more than the maximum daily does may cause severe or possibly fatal liver damage.”

Monitoring and Education

Have you been questioned about what over-the-counter medications you take? I haven’t. The prescription information sheets issued with your prescription says that you should inform your doctor or pharmacist of all of the prescriptions and over-the-counter medicines you take. Without this information just how are pharmacists able to monitor drug interactions?

 Given the potential for unintended abuse, it would be appropriate for doctors to question and warn their patients about the risks of using too much acetaminophen and for pharmacists to warn patients particularly those with chronic pain conditions.  What could be even more effective would be to have all purchases containing ACET rung through the pharmacy till so people can be warned about the dangers of overdosing when using multiple medicines.

SO REMEMBER, the next time you are buying over-the- counter medication, be sure to check the label closely and ask the pharmacist about interactions with your prescriptions.

                               

SOURCES:

http://www.emedicinehealth.com/acetaminophen_tylenol_poisoning/article_em.htm

 http://www.nim.gov/medlineplus/druginfo/med/a681004.htm

 http://www.rxlist.com/tylenol-drug.htm

www.agingincanada.ca/dangers_ of_ acetaminophen.htm

http://www.hc-sc.gc.ca/dhp-mps/prodpharma/applic-demande/guide-ld/label_stand_guided_ld-eng.php#a6-1

Is Sugar Toxic?

IS SUGAR TOXIC?

Yes, according to the new research reported on 60 Minutes,  April 1st, 2012. I'd like to think it was an April Fool's Day prank but no such luck. This is a big problem for my sweet tooth! It is now explainable though, since sugar is as addictive as cocaine. Now that I know the truth about sugar, I am going to cut back on it and avoid consuming 130 pounds annually - like the average American.

Where did all of this sugar come from? Well, in an effort to reduce heart disease the food industry removed fats from food and replaced it with sugar (to maintain the flavor). What has transpired? Heart disease has skyrocketed along with cancer, Type 2 diabetes and obesity.

But why is sugar toxic? Sugar increases LDL (as in the blood vessel blocking type); it causes insulin to spike; and it feeds the growth of some cancers.

It would be nice if it was possible to replace sugar with say, honey. However, according to the "experts" all sources are equally bad.  For more info go to: www.cbsnews.com/8301-18560_162-57407294/is-sugar-toxic/

IS THE SALT IN YOUR DIET KILLING YOU?



<>

We have all probably heard that eating salt causes high blood pressure! But is it a big deal? A recent MSN news story stated that 800,000 Americans die each year due to diseases related to high blood pressure ((kidney disease, heart disease, and strokes).

The US Centres for Disease Control and Prevention found that 9 out of 10 Americans exceed the Tolerable Upper Intake Level (UL) of 2300 mg. This is the standard adopted in North American as the highest intake level that is likely to pose no risk of adverse health effects. It is equal to 1 teaspoon of salt a day.

Canadians are no different from their southern neighbours. The average Canadian eats more than 3400 milligrams of salt daily. Even without adding salt to food, it is there in our diet.

Only 1500 mg of salt is needed daily to support health. Sodium is needed in the body to regulate fluids and blood pressure, and to keep muscles and nerves running smoothly. People with high blood pressure, kidney disease, diabetes and over the age of 50 years should be adhering to an upper limit of 1500 mg.

 So we think we are okay because we don't add salt to our food and rarely snack on chips... But did you know the biggest source of salt is bread and buns. Not because it contains the most salt but we eat several servings each day that add up. According to a US study Americans get 44% of their salt from the following foods which are listed from the highest salt source to lowest: bread and buns, cold cuts and cured meat, pizza, poultry, soups, hamburgers, sandwiches, cheese, pasta dishes, meat loaf, chips and pretzels. The processed foods and restaurant meals contain even more salt than usual.

I am a little embarrassed to admit the food in the picture above came from my kitchen.

• The bagel contains 390 mg (or 26% of the daily value) based on limit of 1,500 mg a day.
• The can of mushroom soup contains 2250 mgs of salt which is well over the tolerable upper limit for my age group. When you look at the label on the can it states the sodium % based on the serving size and daily limit of 2300 mg. But this label in my opinion is misleading. The serving size is a ½ cup of soup. I don’t know about you - but I eat most, if not, a whole 10 oz. can of soup.
• Even the Healthy Choice – Chicken with Rice Soup contains 960 mg in the can of ~ 2 cups and according to the label it contain 40% less sodium that leading competitors. It is interesting to note that American Heart Association put its sign of approval on this can of soup. In the small print it states the food meets their criteria for saturated fat and cholesterol healthy people for children over the age of 2.

That reminds me of a Fifth Estate program I saw about sodium. The chief nutritionist of the Canadian Heart and Stroke Foundation was questioned why she would be recommending canned soups with high sodium levels. I can’t find the documentary in the CBC archives so it must have been a number of years ago. However, I clearly recall hearing that packaged foods in Canada have a higher content of salt than American foods. I was flabbergasted to hear the food manufacturers had somehow decided that Canadians had bigger appetites for salt and demand it! You have to wonder if this is still the case.

Governments are now looking at ways to influence the sodium content of Canadian and American diets. In the U.S. they predict they can save billions of dollars in health care costs if they can reduce the average sodium intake by 20%. In Canada, they have set a goal to reduce the average Canadian consumption of sodium to 2300 mg by 2016.

• You may hear some people saying that the government has no role in their food choices. Remind those people that they can always get out the salt shakers and add extra salt to their food, if health is not a consideration.

 In the meantime, we can choose to avoid certain manufacturers that add too much sodium to their products. From what I have seen with Campbell’s soup, this may be one place to start. And remember to read the labels to find food that is truly sodium- reduced, not just advertised as such.