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.