Find A Good Pharmacy & Simplify Your Life!

Let’s face it.  Managing RA can be a full-time job.  Anything we can find to help simplify our lives is a huge plus.

Last week I called my new PCP for a script for a blood pressure med that had expired.  She is taking over all the scripts for my bp and pain meds, and that is a blessing.  Having one doctor write those scripts is much more convenient.

I called my pharmacist two days later to make sure the script was ready, and they said they never received the script.  Thinking that perhaps there was a “glitch” in the electronic script system, I called my doctor again.  Once again I asked them to send the script to my pharmacy.

I don’t want to bore you, so just know that this scenario went on for days.  When I called my “old” pharmacist, I explained that this is a bp med, and must be taken every day.  Not once did they offer to call my doctor’s office.  Not once did they offer to give me a few tablets to take until this fiasco was finally sorted out.

Things have changed at my “old” pharmacy.  They have had a lot of turnover. There are new people there, and they are not yet well-trained.

The people who work there seem so tired and so rushed.  It is not a good situation. They used to know me by name.

I was a frequent customer.  They recognized my little Ranger truck when I pulled into their parking lot.  More often than not, my meds were waiting for me on the counter by the time I made my way inside their place of business.

After my last unsuccessful phone encounter with the “old” place, I called a friend to ask what pharmacy she used.  She made a recommendation and gave me their phone number.

I called my doctor’s office once again, and asked them to send the script to the new pharmacy.  The woman who answered my phone call at the doctor’s office was quite pleasant and told me I had made a wise choice.

Apparently, my doctor’s office works closely with this particular pharmacist.  The woman I talked to offered this piece of encouraging information:   If there is ever a problem with a script, the pharmacy I chose calls the doctor’s office for the patient.  How cool is that?!?

I picked up my script for one of my blood pressure meds today from the new pharmacy.  The woman at the counter was well-trained, pleasant, and efficient.  I was so pleased! 

The “new” pharmacy also gave me a form to fill out and return to them.  Once I have that completed and returned to them, they will change my scripts so that I can pick them all up at one time. 

All of my scripts are in the process of being transferred to my new pharmacy as I write this blog.   I will be filling out that form this evening.

I really don’t know why I didn’t transfer to this pharmacy a long time ago.  They are closer to my home, and they are smaller……….both plusses in my book! 

I love the idea of being able to pick up all of my scripts at one time.  I also love the idea of working with people who really know what they are doing.  They are friendly and good at what they do.  I have just simplified my life!

RA & Your Medical Team: Trust Your Instincts!

Well, here we go again!  I saw my rheumy last Friday…almost a week ago.  I left that appointment more confused than when I arrived.

My rheumy has always been open and direct, and very helpful.  Maybe she was having an off day.

Previously she told me that since I am sero-negative, she uses my CRP to gauge my disease activity.  She also told me that my labs are never super high, but they are higher than “normal”.

Previously, my CRP was 7+.  I tried and failed Humira.  I moved on to Orencia, and my CRP was reduced to a .9!  What a fantastic turn around.

I have been in a flare for two months, and quite frankly, I am getting tired of it.  My CRP is a 10 now, and I am concerned that Orencia is losing its effectiveness.

My rheumy asked why I thought Orencia was failing.  I explained that all of my joints are tender, my fatigue has increased and my CRP is 10.

She just brushed all of that off.  Her take is this:  RA flare, Fibro flare, and severe osteoarthritis in my back. 

Her solution:  Cymbalta, which I cannot take because it raises my bp.  Her second solution:  Celebrex.  I explained to her that it raises my bp.  She wasn’t impressed.

Came home, took Celebrex, which helps a whole lot. Tried it for four days, and watched my blood pressure steadily climb to a dangerous level before I called my PCP.

Thank goodness for good PCP’s.  Dr D called me back and said no more NSAIDS.  She had reviewed my chart and saw that I was maxed out on three of the four bp meds I take.

Moral of this story:  If you feel as though your doctor…any doctor…is not taking you seriously, do not just blindly accept his or her proclamations.  If you have a nagging feeling in your tummy about a treatment option you have been offered, trust your instincts.

You may need to get a second opinion.  If you are lucky enough to have a good PCP, as I do now, you can check with him/her. 

I have come to realize that specialists only focus on their specialty. They don’t treat the whole person, as they should.  That attitude is a dangerous one for those of us who have more than one serious medical condition.

My blood pressure was over 100 on the bottom, when I called my PCP.  And that was in spite of taking my prescribed bp meds.  That is a dangerous thing.  Bottom line:  You are the most important person on your medical team.  Never doubt yourself!

Things That Make You Go: Hmmmmmmmmmmm

I saw my rheumy last Friday.  The appointment is a bit of a blur, really.  The brain fog was heavy that day.

I thought for sure Orencia had failed, but she does not agree.  Not yet, anyway.  She told me the CRP test my PCP ran was “high sensitivity”.  She explained that is used by cardiologists to determine heart attack risk.

She further explained that the CRP test she uses to gauge disease activity showed my level to be a 10.  Now, my level has never been above a 7 before, but she didn’t mention that.

She also didn’t mention that my CRP was .9 right after I started Orencia.  It was working so well!

I was a bit confused, so I asked her why all of my joints hurt if Orencia is still working.  Her conclusion:  I am in an RA flare, a Fibro flare, and the degenerative arthritis in my back is causing a lot of pain.

My rheumy does not buy the diagnosis of my orthopedic doc of spondyloarthropathy.  She wants to determine that herself.  All I know is that every vertebra on that x-ray was dotted in bright white.  My ortho says that is inflammation.  My rheumy says it was probably OA. 

Isn’t it wonderful when you get caught in the middle between two doctors?  Not a good place to be.

My rheumy wanted to prescribe Cymbalta, but I explained to her I had tried that in the past and I cannot take it. It raises my blood pressure way too much. 

She also was stressing to me the importance of sleep.  I guess I looked tired.  No kidding!  When a person is in a lot of pain they do look tired, regardless of the amount of sleep they are getting.

I have an appointment with my PCP in three weeks, and I am looking forward to it.  I am going to be completely honest with her.  I am confused, and I need some help sorting this out. 

My back is still very painful and if I “push” it, my legs just stop working.  It is more like a muscle thing than a nerve thing.  My muscles just get sluggish and refuse to go.

I was also stunned at my rheumy’s willingness to write a narcotic pain med script for me.  I didn’t ask. She asked me if I had enough T3.  I am shaking my head here.  Something is up.  Perhaps my PCP will help me figure this all out. Stay tuned!

Tomorrow Is My Big Day

It’s almost here…the first time I see my rheumatologist since Orencia has failed.  I say it has failed.  Not sure she will agree.  We shall see.

My CRP used to be under 3 because Orencia worked so well for me.  Blood test two weeks ago said it was 28.6…the highest CRP I have ever had.

I am sero-negative, so my RD watches my CRP to track my disease.  It will be interesting to see what she has to say.

I was lucky with Orencia.  I had no side effects………….not even an injection.

Now I am wondering if she will suggest Orencia infusions, or abandon it altogether.  After thinking about it for a while, I imagine we will move on to another biologic.

My first biologic was Humira.  It didn’t help much, but it did lower my CRP slightly. My rheumatologist wasn’t impressed, and so we moved on to Orencia.  That was a year ago.

My mind is going through the list of available biologics, and I am not sure I like any of them…except for another TNF blocker.  Anti-TNF’s give me the least amount of “pause”.

Then there is Rituxan and Actemra. My mind is not ready to go there yet.  I have a fear of these biologics.  I know they are hard on the body, and I’m not ready to go there yet.

I do know one thing.  I have a wonderful rheumatologist who does not rush me out of the exam room.  She is patient and willing to offer options to me and then ask for my input.  I trust her.  I just realized how much I trust her.  Everything is going to be okay

God Sent An Angel Today

I was thankful to be able to make a trip into town this morning, before the heat of the day built to an unbearable level.  I must say, “Thank you,” to Methotrexate because Orencia is not helping much, if at all, lately.

I drove my little Ranger truck into town which is about 20 minutes from my home, and went to Wal-Mart.  Everyone in a small town goes to Wal-mart, it seems.

I parked in a handicapped space, and opened the door to my little truck.  I grabbed my cane and slowly eased myself down to the ground.  My back is “talking” to me today, and so I am a bit slower than usual.

As I slowly made my way to the front door of the store, I saw a pleasant-looking older gentleman coming my way.  When he was a few feet from me, he spoke up and said, “Keep using that stick.”

I had to smile.  The “stick” he was referring to was my cane…..the one with kitties all over it.  I like “sticks” with personality!

I assured the gentleman that I would keep using my “stick”, and smiled back at him. I was drawn to this elderly gentleman’s face.  It was kind.  He was walking really well for an elderly man, and his eyes had a wonderful a sparkle in them.

The elderly man continued talking to me, and said, “We have to keep going, you know.”  I quickly assured him I would keep going, and he smiled back at me…….apparently pleased with my answer.

This exchange may seem insignificant to some, but it was huge for me.  That older gentleman just made my day.  God did, indeed, send an angel today. 

Orencia Has Failed!

As I write this SharePost, I am sitting on my comfortable blue micro suede couch with my right foot wrapped in an ice pack.  It is elevated, and I am hoping the ice will make a positive difference in the swelling and pain.

As I gaze at my funny looking feet, I am sure of one thing.  Orencia, that worked immediately and so well for a year, has failed. The RA Troll, sneaky creature that he is, has found a way around my med of choice.

The wonders of our immune systems, and the wonders of biologic agents, still amaze me. I am thankful we have biologic meds as an option for treatment, unlike the RA warriors who lived before biologics were developed.

I see my rheumatologist on Friday.  I know Orencia has failed because my CRP is now 28.6 and I feel it.  I feel it all over my body.

I would be hard-pressed to find a joint that is not inflamed, and the fatigue is overwhelming.

I am sero-negative, so my rheumy pays close attention to my CRP lab results.  When I first started Orencia, a year ago in July, my CRP was over 7.  The first blood test after I began treatment with Orencia showed my CRP to be .9!  Clearly, this was the drug for me at the time.  Unfortunately, that time has passed, and I am moving on.

My first biologic med was Humira.  That med seemed to kick in during the fourth month of treatment.  It never lowered by CRP below 5, but it did help………….a little. After a month of helping a bit, it stopped helping at all.

My rheumatologist did not suggest another TNF inhibitor for me.  She moved me right on up to Orencia.  I wonder if she thinks I made antibodies to Humira.  I will ask her Friday.

This Friday will probably a long appointment. My options: another TNF inhibitor, Xeljanz, Rituxan or Actmera.  I will tell you right now, I am not keen on Rituxan or Actemra.  I am afraid of them, and I will admit it.

I wonder if my rheumy will let me try another TNF inhibitor.  If so, am leaning toward Simponi.  If any of you have experience with Xeljanz, Rituxan, Actemra or Simponi, please feel free to share your experience.  I would appreciate it!

Will You Make A Difference?

It is Sunday morning, and I am sitting here alone thinking about my week.  Normally, I would be at Mass, but the RA Troll has decided to strike, and so, I am at home.

I am a Christian, and so I do not believe in holding grudges.  I believe in forgiveness and second chances.  But I am a bit sad today.

I have noticed a disturbing trend of late.  People are staring and sometimes glaring at me as I climb out of my little truck that is parked in the handicapped space at whatever establishment I am visiting. I really don't get out much, so the frequency of these occurrences really strikes me.

I require a cane for walking, so it isn't as though there is no obvious sign that something is wrong.  That doesn't seem to make a difference.

I have had some kind looks.....usually from older people, who often, are using walking devices themselves.  I am 59 years old, but people say I don't look my age.  Perhaps because my hair has not turned white yet.  I don't know.

I also feel the tension from other shoppers as they wait for me at the checkout to write my check or look for change in my purse.  My hands are not what one would call nimble anymore.  It takes me awhile. The more tension I feel from the other shoppers, the more my fingers freeze up, as I try to push them beyond their limits.  Generally, at least, the cashier is kind.

I recently posted a petition on my FB page advocating for chronic pain patients.  In an attempt to control prescriptions drug abuse, the DEA has made it more difficult for those who truly need those medications to get them.  They have made it so difficult on the doctors that many of them are not prescribing pain meds at all anymore.  Instead, they want to refer  you to a pain management specialist.

Pain management docs are like all the others.  Some are good, and some are bad.  Some are greedy.They overcharge for drug tests because they can.  People with chronic pain conditions are so desperate for help, they don't have much choice.  Then there are those patients who simply cannot afford the extra expense.  They are left to suffer.

One of my acquaintances commented on my DEA petition post.  Her comments reflected a total lack of understanding, or even desire to understand, the plight of chronic pain patients. I was appalled at her lack of compassion.

The economy in this country is struggling.  Jobs are few and low-paying. I get that. I was forced to stop working almost a year ago, but I haven't been out of the labor market for so long that I don't understand the stress this situation causes.

I would hope that were I still able to work, that I would have some kindness and compassion in my heart for those who struggle just to get up and shower every morning. The hardness of hearts that I see every day now seems to me to be directly linked to unhappiness and anger.

Iif people remembered that we are all God's children, things might get better.  We are God's hands on earth, and we are to love our brothers as we love ourselves.

Somehow that message has been lost.  Perhaps if each one of us went out of our way to be kind and understanding, we could make a difference.  We need to make a difference.

I Am Not A Post

I am not a post standing alone in a pasture.  I may move slowly, but that is the best I can do.  RA has slowed my movements and crippled my joints.  Still, I am not a post.  I am a person with a past and a future and a now.  I live in the now, because none of us know what tomorrow may bring.  Those of us who live with RA have a special appreciation for living in the moment.  We are people just like the rest of you.  We have feelings.  We have friends and family.  Don't look away the next time you see us.  Treat us as you do everyone else.  No special favors, but no dismissive attitude, either.  We have interesting stories to tell.  We have strong hearts.  We are warriors.  We love and laugh and forgive often. We are not posts standing alone in a pasture.

Happy 4th Of July!

It has been a beautiful day in central Missouri.  The sun was bright, the temperature was in the 80's, and the air was dry.  Not too many days like this in July in Missouri.

Our family cooked out, ate corn on the cob, and ice cream.  It was a good day.

I did have one minor glitch.  I sort of fell off a a lawn tractor.  I was trying to help my husband get the tractor "unstuck".  I fell, not so gracefully, I might add.  Thank goodness the ground was only a couple of feet down.  Landed on my shoulder, so extra meds it is.

Be careful out there.  The RA Troll is always looking for ways to make our lives as complicated as possible. He doesn't need any help from us.

Hope you all had a blessed holiday!

The Gifts RA Has Given Me

I know that it sounds odd to talk about a chronic, painful disease giving gifts.  The truth is, that RA has brought a few blessings along w/the endless doctors appointments and medications.

Let's face it.  RA slows us down.......a lot!  In my pre-RA life, I was always rushing here and there.  My mind was full of what I had yet to do.  I wasn't even thinking about what I was currently doing.

RA has changed that.  I can't move quickly anymore, and therein lies the blessing.  I notice people and I notice and appreciate nature a lot more now.

When I go to the store, I take the time to talk to people, or offer a smile.  It is my small way of trying to make the world a better place one person at a time.

I had coffee on the porch this morning.  It is a beautiful morning.  The grass is wet with dew.  The sunshine on the blades of grass makes the lawn appear almost magical.

My bunny friend, Heather was there again this morning.  She was having her breakfast of broad leaf grennery and waiting for her dessert.  As I threw out her pieces of carrots, I had to smile to myself.  Thank you, RA, for this gift. 

Don't Be Afraid To Try Another Biologic

It has been a years since my last post.  During that time, I have switched from Humira to Orenica with wonderful results.

Humira stopped working for me after four months.  Humira is an anti-TNF, and there are many biologics in that class of drugs.

My RD decided to move me up to Orencia, a different type of biologic that targets your body's T cells.  I was lucky.  I had positive results within a month. 

While the co-pays for biologics can be daunting, there are co-pay programs available from the manufacturers of this class of drugs.  Many people can qualify for co-pay assistance.

My co-pay for Orencia is $5.00 a month.  I am sharing this information with you so that you know how many options are available to those of us who need a biologic to control our RA.

If you are currently on a biologic medicine that is not helping you, please talk to your rheumatologist about your medication options.  Biologics do generally take up to three months to show much improvement.  I was one of the lucky ones who reacted positively to Orencia almost immediately.  The important thing to remember is that there are many options available to RA patients now.  Don't be afraid to look for the one that will work well for you.  It may just give you your life back!