Have I Lost My Abilities? My Pharmacist Votes Yes.

I read a story in the Toronto Star last week about the parents of a teenage girl who died after taking a drug called Diane-35 for acne. They are suing the drugstore that dispensed the prescription for failing to warn her and them about the dangerous side effects of taking it and for not mentioning that use should be limited to 3 to 4 months maximum.

The story in The Star, by Diana Zomislic, quotes a senior pharmacist for the company that supplies the HealthWatch information given out with each new prescription to Shoppers Drug Mart customers. He said that they restrict the number of side effects they mention on the newer info sheets to six because they don't want to frighten the customers. 

They made this change for the worse in 2004 and I complained to the pharmacist about the drug information sheet at the time. As a demonstration of how big the change is I will show you what the cautions and side effects were for the rheumatology drug called Arava (leflunomide) in April 2004 compared to the new style warning that I received in June of 2004. 

Here's the original old style information sheet. Note all of the words (620) and the caps to let you know what is crucial.

BRAND NAME: ARAVA 20MG
GENERIC NAME: LEFLUNOMIDE (le-FLUN-o-mide)

DATE: 04/04/14                                                            DIN: 02241889 

                    

COMMON USES: This medicine is a pyrimidine synthesis inhibitor used to treat rheumatoid arthritis.

BEFORE USING THIS MEDICINE: WARNING: Pregnancy must be excluded before the start of treatment with leflunomide. This drug must not be used during pregnancy, nor by women of childbearing age who are not using reliable birth control (contraception). Unless female leflunomide users go through a certain process to eliminate this drug from their body, pregnancy must be avoided for 2 years after this drug has been stopped. INFORM YOUR DOCTOR OR PHARMACIST of all prescription and over-the-counter medicine that you are taking. Inform your doctor of any other medical conditions, allergies, pregnancy, or breast-feeding. USE OF THIS MEDICINE IS NOT RECOMMENDED if you have a history of blood, bone marrow, or immune system disorders. Contact your doctor or pharmacist if you have any questions or concerns about taking this medicine.

HOW TO USE THIS MEDICINE: Follow the directions for using this medicine provided by your doctor. STORE THIS MEDICINE at room temperature below 77 degrees F (25 degrees C) in a tightly-closed container, away from heat and light. IF YOU MISS A DOSE OF THIS MEDICINE, take it as soon as possible. If it is almost time for your next dose, skip the missed dose and go back to your regular dosing schedule. Do NOT take 2 doses at once.

CAUTIONS: DO NOT STOP USING THIS MEDICINE without first checking with your doctor. It may take 4 weeks or more to notice any improvement while taking this medicine. KEEP ALL DOCTOR AND LABORATORY APPOINTMENTS while you are using this medicine. THIS MEDICINE MAY LOWER YOUR RESISTANCE TO INFECTION. Prevent infection by avoiding contact with people with colds or other infections. Do not touch your eyes or the inside of your nose unless you have thoroughly washed your hands first. CHECK WITH YOUR DOCTOR BEFORE HAVING IMMUNIZATIONS (VACCINATIONS) for up to 2 years after stopping this medicine. BEFORE YOU BEGIN TAKING ANY NEW MEDICINE, either prescription or over-the-counter, check with your doctor or pharmacist. 

FOR WOMEN:THIS MEDICINE CAN CAUSE SEVERE BIRTH DEFECTS. DO NOT USE THIS MEDICINE if you are pregnant. You must have a negative pregnancy test before starting this medicine. Use a reliable form of birth control while taking this medicine and for 2 years after stopping this medicine. IF YOU SUSPECT THAT YOU COULD BE PREGNANT or if your period is late, contact your doctor immediately. If you plan to become pregnant within 2 years of stopping this medicine, you may need to follow drug elimination procedures. Ask your doctor, nurse, or pharmacist for more information about these procedures. IT IS UNKNOWN IF THIS MEDICINE IS EXCRETED in breast milk. DO NOT BREAST-FEED while taking this medicine.

POSSIBLE SIDE EFFECTS: SIDE EFFECTS that may occur while taking this medicine include diarrhea or hair loss. If they continue or are bothersome, check with your doctor. CHECK WITH YOUR DOCTOR AS SOON AS POSSIBLE if you experience a skin rash, headache, flushing, blurred vision, sudden onset of sweating, pale skin, yellowing of skin or eyes, dark urine or pale stools, unusual fatigue, or loss of consciousness. If signs of infection, anemia, or easy bruising or bleeding develop, this medicine may need to be stopped. If you notice other effects not listed above, contact your doctor, nurse, or pharmacist.

OVERDOSE: If overdose is suspected, contact your local poison control center or emergency room immediately.

ADDITIONAL INFORMATION: DO NOT SHARE THIS MEDICINE with others for whom it was not prescribed. KEEP THIS PRODUCT out of the reach of children. IF USING THIS MEDICINE FOR AN EXTENDED PERIOD OF TIME, obtain refills before your supply runs out.

And here is the new one in the current style. Half the words and half the side-effects.

ARAVA   LEFLUNOMIDE 20MG    HealthWATCH-
Date: 2004-06-05 Tx: 10479202 DIN: 02241889

Common uses

This medication is typically used to control rheumatoid arthritis. It requires a few weeks to take effect.

How to use this medication

This medication is typically used only once a dav, However, your doctor or pharmacist may have suggested a different schedule that is more appropriate for you. Take it regularly and continuously to maintain its beneficial effects.

This medication may be taken with or without food. It is recommended to drink plenty of water while using this medication.

Important: Follow the instructions on the label. Do not use more of this product, or more often, than prescribed. If you forget a dose, take it as soon as you remember -- unless it is almost time for your next dose. In that case, skip the missed dose. Do not double the next dose to catch up.

As with most medications, this product should be stored at room temperature. Store it in a secure location where it will not be exposed to excessive heat, moisture or direct sunlight. Keep it out

of reach of young children.

Possible side effects

In addition to its desired action, this medication may cause some side effects, 

 notably: - it may cause hair loss;

--         - - it may cause headaches;

- it may cause diarrhea;

- it may cause spots or redness of the skin;

- it may cause dizziness -- use caution when getting up from a lying or sitting position;

- it may cause nausea or, rarely, vomiting.

Each person may react differently to a treatment. If you think this medication may be causing side effects (including those described here, or others), talk to your doctor or pharmacist.

Additional information

A treatment with this medication requires regular monitoring by a doctor. Be sure to see your doctor for all regularly scheduled appointments.

It sounds a lot better in the second version, doesn't it? It also looks better. I appreciate that health literacy is a problem but the original version, though longer, is quite easy to follow.  The new style is so lacking that I questioned whether this was actually the drug info form when it was given to me.

When I compared these two back when the change was made I was indignant that the pharmacy had decided for me that 'dumbing it down' was necessary and I complained about the missing side effects which could occur to anyone. I'd rather be alive and afraid than happy and dead.

Now that I see a case where better information might have helped a particular patient I wonder if Shoppers Drug Mart will make a change.  It sounds unlikely.

There was an another occasion where I went to my doctor and I got a new prescription that changed one of my long time medications for a similar one at my request and for health reasons. The pharmacy thought the doctor must have made an error and phoned and got it changed. When I picked it up I was dismayed thinking that they had filled the wrong prescription. It upset me that they had interfered between me and my doctor without my consent or knowledge.

Another thing that is distressing to me as a patient is the continual change from one brand of generic drug to another generic based on what is good for the company. 

DodoBird from archive.audubonmagazine.org

Gas Pumps and Your Hands

I'm grateful and appreciative for friends who are there for me year round. At the moment sciatica is forcing me to lie down rather than sit so this a a duo guest post. It's always something at Christmas and sciatica is (mostly) better than chills and fever.

Here's Patty talking about pumping gas, a problem for any who are disabled and still drive. 

"I was trying to put gas in our car one day and was unable to get the cap off the gas tank.  A very nice man with strong hands helped me - usually if you ask, someone will help you do most anything.  You just have to not be too self-conscious to ask for help. 

I even have one of those gas cap grippers that is supposed to help open the cap, but that darn thing didn't work for me. I don't mind asking for help but once it's open you still have to pull the hose out, press the handle and then get it back in the slot. It's just easier to use a full service gas station, if you can find one."

Not what it used to be. From http://my28chev.blogspot.ca/

And here's what happened to Ginny at the gas pump:

"LOL Anyway I had to get gas. I was already tired and hurting from doing the floors. If I hadn't had to make the house payment I would have just stayed home. I was done getting gas, hanging the nozzle back up and slipped! Grabbed the gas hose and kept myself from falling on my butt but grabbing the hose hurt just as much as falling I think. It left a mark like a rug burn on my pinky and side of my hand. Oh my goodness it hurt so bad! 

My hands had already been hurting and that made the pain go off the freaking chart! I was in tears all the way home. Then I meant to turn on the dome light but pressed the button to open the sunroof and a whole bunch of snow fell in, every where, all over me, my purse, cell phone, quite a mess! So got in, emptied out my purse, changed clothes, put the groceries away and stuff,  took my regular night time pills plus Advil PM. I waited a bit, was still hurting pretty bad so took half a pain pill. "

hahahalolpics.com

There's danger in everything - you just have to laugh and take care.

__._,_.___

Martha Doesn't Live Here Anymore

Here's a wise guest post from Julie. I think she and her husband have the true Christmas spirit.

"I have certainly "re-invented" many aspects of my life to accommodate my health.  I am sure that most of us have done that.  I tried for a long time to just keep going as usual at Christmas, but that didn't work at all.  When I was younger, I did much better and could do more.  As older age sets in, I struggle more each day.

I think the thing with the Holidays is that we all have to do our normal routines and then we have to add more because of the holidays.  That is what is hard for me.  I have a hard enough time just getting through the day doing what I have to do - laundry, cooking, shopping - (you get the idea) and then piling other things on top is just plain too difficult at times. 

Next week and the weeks following I have to get things done for Christmas.  My youngest son has graciously offered to have our Family Gathering at his house.  I haven't heard from the rest of the family, so really don't know what everyone plans to do.  It is not fair that he is hosting everything again!  Hopefully, we can figure out who is planning to attend and figure out some simpler dinner menu. 

Heath-Robinson. How To Dispense With Servants In the Dining-Room

The family is all spoiled by my past formal dinners.  We are not doing that anymore!!!  My body has rebelled and I just am unable to repeat my past "Martha Stewart" performances - HA!

I just accept what is and go from there.

John says all of the neighbors probably think that I am dead because I haven't taken the usual dog walk in months.  I was just about ready to start the walk again when I broke my toe!  Now, the weather is awful and I don't want to go outside.

I wish all of you could see Lou Lou the cat.  He is a monster in size.  I can barely lift him.  We plan to have him neutered in the next few weeks when he is 4 months old. The doctor said that he would be more able to withstand the anesthetic then.  We have ordered him a heated bed as he sleeps in the garage.  It was supposed to be delivered today but is not here yet.  John asked me what I wanted for Christmas and I told him I wanted a heated bed for Lou Lou and he said that is what he wanted also - so that is what we are giving each other - a heated cat bed. - HA!"

Old Christmas Card

That's such a great present Julie and John are giving to one another. You can't help but smile.

Here's a link about strategies for dealing with patient burnout that also has 10 useful tips. I'm a pushover for a good list and Martine Ehrenclou has written a most helpful post.

A Place For Your Stuff

When we went to BC for our holiday one of the first people we met was Natalie Lanoville at the First United Church in the Downtown East Side. Their Ministry has a long history of advocacy and focuses on four pillars: Social Justice, Hospitality, Housing and Healing.

Mural at First United Church, Downtown East Side

Natalie's been a friend on Twitter since the Church put out an urgent call for funds to buy laundry soap so the clients could wash their clothes. My husband felt that was a real need and responded. After that he kept in touch so we ended up having a tour of the place and a Tweet up lunch with Nat.

One area she showed us really struck me because of its practicality and my own attachment to "stuff". First United turned part of their parking garage into storage space for homeless people. Everyone gets a bin; a few store shopping carts.

Storage bins at First United

She told us that in the weeks after this storage was put into use that property crimes and littering in the area dropped dramatically according to the police. I can imagine nothing more useful than this idea, with the exception of course of food and shelter. It is a practical and concrete way to ease the lives of those who are trying to overcome problems.

Now the Church has an Indiegogo campaign to raise funds (campaign closed successfully) to replace the bins. I'd like to suggest that some of you with much donate in this season of abundance, so that people with very little at least have a place to keep it safe.

They have a really heartwarming video at the Indiegogo site. The people using the bins describe what it means to them much better than I ever could. 
Another area they have at First United is a chapel which provides a place of peace, as well as a space for healing ceremonies and meetings.

Lunch with Nat was great. Here's a picture of it, though the company was more of a feature than the food.

The restaurant was also notable. Thai and quirky. It is always great to meet Twitter or online friends in real life.

So many "E"s in Our Lives

There are so many "E"s in ePatient. We've got engaged, empowered, equipped and enabled as goals, and many of us are working diligently to achieve "all E"s on our progress cards. The resulting (hoped for) collaboration with our doctors is a big step from the position most of us are in when we get a chronic disease diagnosis.

ePatient by Anet

To take on an active role in our care we need to be empowered, equipped, enabled and engaged.  As we truly start working on upgrading our skills to effective levels there are a few other "E" things that will help us.  It's almost like a puzzle game. Finding those special "E"s can help you to become an ePatient. 

I think the missing "E"s are encouragement and empathy, and it is the letter E that is sponsoring this idea.

A letter from our sponsor.

You can use them in your own attitudes towards yourself, but they are most powerful when they come from someone else

With a sudden health problem that is unlikely to disappear you wish for superpowers just to get to the normal level that other people appreciate. Sometimes it's empathy or encouragement that gives you the key to gaining knowledge or improvement.

Empathy  - you know when it's not there - can be enhanced by some films or books as described in this blog post called "Empathy - The Secret Sauce in Physiotherapy?". Coincidentally my best source of encouragement has been my physiotherapist. See this post about a turning point for more details about encouragement/empathy.

Here's another story/post where coaching and encouragement were good for doctor and patient. I really liked Dr. Thiele Isip Tan's enjoyment of her patient's success.

Maid of the Mist Double Rainbow. Dad's last cruise

For me the old model of doing everything that I was told and feeling that poor progress was my failure has been left in the past. 

And on the positive side I read (and can't find the link) that having a chronic illness and treating it very well is a secret to a long life.

Here's another link that I liked Placebo, Nocebo, and Expectations: Leveraging Positive Outcomes. The idea that even non-verbal clinical behaviour can influence patient outcomes certainly helps to explain why some patients thrive with a certain course of treatment while others don't.