Infusion, Round 1

I spent 1.5 hours in a room and chair like this today.  Although instead of just 4 chairs, there were 8.  They were grouped in a kidney bean shape all facing a large TV.

The view above me looked like this.

One bag of Orencia was administered over about an hour.  I have to say, I was incredibly nervous about this today.  I walked into the doctor's office where the infusion was going to happen.  The nurse at the front told me to enjoy my time in the "lounge" today.  That is what they call the infusion room.  As I was called back, they checked my weight to verify my dosage and then let me pick my chair.  I was a bit shocked as all 5 chairs that were filled were by people about 40 years older than me.  I don't know what I was expecting, but I didn't think I would feel SO different.  Besides that, I felt like I might pass out from the mass anxiety I was having about how I would react, feel, etc.  The cup of coffee I had just finished was not helping to keep my heart beating any slower either!

The ladies in the "lounge" were beyond friendly.  They were great at putting me at ease and telling me about each step.  They did their best to make me comfortable and let me know of the new routine.  I started out with 2 Tylenol and a claritin tablet.  They give you this to help with any pain and help reduce any reactions.  I loved that they actually asked me which arm was best for blood draws, etc.  My right arm is terrible!  People can't ever seem to get a vein there.  On my left arm, I have this massive vein that jumps out and says "stick me!"  The girl was great to get the IV in and the normal blood draws.  Then it was time to hook up the Orencia.  As the drug started going, I was just nervous about what to expect.  I settled in with my book and tried to keep to myself a bit today.  An hour of uninterrupted reading time...how nice!  I got tickled with the conversations going on around me.  I guess people get very regular around there and know about kids, grandkids, etc.  I was known as the "youngin" today.  I guess I'll get in the grove.

Talk shows seemed to be the favorite of the group.  Susan Lucci was Rachael Ray's guest today.  Working full time, I don't have any idea what time these shows come on!  The little old people got all into discussing how "fixed up" Susan Lucci has become.  "Oh she looks great.  Just look at her.  Someone should tell her if you are going to get that much work done, make sure to get the sags out of your neck too.  Who wants a saggy neck?"  Oh the little things.

As my bag finished up around noon, I felt okay...funny, but okay.  The medicine didn't burn going in, but made me very cold.  I was glad that I had remembered to bring a jacket to lay over me.  Too bad they didn't have blanket warmers...that would have been lovely!

So I go back in 2 weeks followed by another 2 week session.  These are called loading doses.  After the 3rd 2 week dose, I'll be on regularly monthly infusions.

After I left, I was thankful for meeting my sweet friend Blaire for lunch.  She was on standby if I needed a ride home.  I ate a good lunch and am thankful now I did.  Now that several hours have passed, the nausea and exhaustion have set in.  Hopefully these side effects are not long term or happening every session.  Time to get these kids to bed and I won't be far behind!

Cross your fingers this one works!

**Multiple postings today!! Crazy, I know!!**

Wednesday is a big day in the journey of my RA treatment.  I am beginning a new drug treatment that will hopefully give a great deal of relief!  In the last few months, I've had some major tweakings of my RA and TB drugs due to some rough side effects.  Hopefully this new addition will allow me to drop some others as well.

The new treatment is in the class of RA drugs called biologics.  The particular drug I will be taking is called Orencia.  We have decided that the infusion route of the drug will be best in my situation.  That means, I will go to the doctor's office and have the medicine infused via an IV.  At the beginning, I will have to go every 2 weeks for 3 doses.  After this "loading" dose, I will be on a monthly schedule for the infusion.  Wednesday morning is my first appointment.  The actual infusion should last around an hour or so.  I'm hoping this is a restful hour and I can just sit and read a book.  Not looking forward to the IV, but hopeful that the results will be worth it.  This medicine does continue to further suppress my immune system.  Given the fact that I have 2 young kids and I work in a public high school makes it a bit difficult to reduce coming in contact with germs.

Prayers that this one works!  My new doctor is wonderful.  He even informed me that there is some new research that young people with RA, who have the blood markers and symptoms like me, can possibly be sent into remission by attacking the disease with these tough drugs.

Soccer

Jack loves soccer!  Maybe I'm biased, but the kid has a bit of talent for it.  Several of his school friends are on the team, so that makes it extra fun.  We've got a couple more games left, but here is what we have so far.  He's quite the scorer!

Best buddy, Braxton

Go, go, go!

Playing some good defense

Practicing his throw-in

Ready for a break away!

Just after scoring his first goal of the season

high fives all around

Giving Braxton a good job pat

Getting right in the middle of things

Good kick!

Summer....

Yes, I'm late with my posts.  Life gets busy around here.  Now that our computer is fixed, I'm able to download pictures.  So without any further delay...here's a brief summary in pictures of our fun-filled summer.  Man, these kids are getting big!

Who says you can't look good while putting out mulch?

waterballoon fun!

hard to keep hands out

Daddy is much more fun in the water!

Fun at the treehouse exhibit at Cheekwood garden in Nashville

The Rainbow fish one was really neat

Wow, it was a hot day!

So of course, we had some breakdowns!

New Beginning

Well, it is here.  Jack is officially a school aged kid.  Kindergarten started today for him.  He was beyond excited and had a "super awesome day" in his words.  Kind of warmed my heart when he told me his favorite thing of the day was "getting to do math."  With that attitude, he is bound to make lots of friends!

tonsil day

Caroline is having her tonsils out today. I am waiting right now to hear that she is finished. she fought the anesthesia hard and that was tough to see. here is a fun video we made last night of her telling me about today. Let's hope she is this excited when we get home!

What kind of drugs to you take?

You might have noticed that I like to use this blog as a way of showing pictures of the kids, but I've also been using it as a way of letting people know more about RA.  So here we go again.  Several people have asked me lately how the RA treatment has been going and what kind of medicine I have to take.  Lots of things have changed and my medicine routine is definitely detailed!  I think back to this time last year and the only thing I took was a daily vitamin.  Now, I have one of those old people pill holders made by the arthritis foundation.  Tommy was sweet to pick that one up for me as it is easy to open!  It is also larger, which is helpful for the large pills I take!  So, on a daily basis I take:

 

Arava (aka: leflunomide) This is the newest drug to my RA regimen.  This is a DMARD (disease modifying drug) that we have added until we can start the biologic medicine here soon.  More on that in a minute. So far no major side effects.  I noticed a bit of nausea at first, but has seemed to fade.  I am on a lower dose of it, so let's hope nothing else.  I have to watch liver function with this med.  Hopefully we will be able to tell soon if it is helping!

Calcium and Vitamin D: I take this one regularly as I am on and off prednisone to help with inflammation.  Prednisone can suck the calcium from your bones.  Plus, just a good idea to take some extra calcium!

Flaxseed oil: I take one of these a day.  This is good for Omega 3's and has also helped wonders with my Sjogren's syndrome.  I have been able to stop taking my Restasis drops for my eyes.  This helps with natural lubrication for the dryness of my eyes.  Let's hope it continues to help in the fall and winter when they were so bad before!  Anything to help me take less major medicine!

Isoniazid (INH): This one is really fun.  This is to treat the TB...yes tuberculosis.  Somewhere along the way, I have been exposed to TB.  Now, let's get this straight...I am NOT contagious.  It is a latent form (meaning non-active).  People can carry the latent form and not be treated.  But let's remember, I am on immunosuppressant medicine and have been for almost a year.  I could have come in contact with someone then or maybe even during some of my travels.  How often do you really have a TB skin test done?  I had not had one for 7 years, but they make you take one as a precaution to starting a biologic medicine to help with the RA.  Thank goodness they do!  The biologic could have activated the TB had I started it.  So now, I am on a 9 month regimen of INH to get rid of the TB.  I should be able to start the biologic in a couple months...hopefully!  No side effects with this one, but do have to watch liver function with this one as well.  I do lots of blood work!

Folic acid: I take 4 of these pills a day.  I take this to off-set some of the side effects of the methotrexate I am going to mention in a minute.  Methotrexate works on the folic acid in your body.  So by adding it back in, it is supposed to suppress some side effects.  I get REALLY bad mouth sores, usually 4-5 at a time, and usually twice a month for a week at a time.  I don't know if this really works, but it can't hurt to try.  My new rheumatologist has some suggestions as to how we can change some things up next month to try and reduce the side effects even more.  Can't wait to hear that!

And now the fun one: methotrexate.  I have mentioned this one in a previous post.  This is a chemo drug that is also given to RA patients to suppress the immune system.  I used to be on an oral form of it at a dose of 20 mg/week.  You can only take this once a week or it can cause liver toxicity.  As you have noticed, I have to be careful with liver toxicity.  I have now switched to the injectable version of this medicine as it is supposed to be more effective in the injectable version at the same dose as the oral. So hopefully getting more bang for your buck.  Since they can't up my dose due to so much liver strain, we figured this was worth a try.  The try part means I have to give myself a shot.  Not just any shot, a shot into the muscle.  Tommy gave me my first one, and honestly, I have found it easier to give to myself.  I know when it is coming!  I think it is crazy how neon yellow this medicine is.

Here is a nice image describing the different types of shots.  For example, Tommy is a diabetic and he does the subcutaneous shots.  We had to learn how to do the IM shots at the doctor.  There is some risk of blood clots if you hit the blood vessel, so you have to be careful!  The needle is long!  It is probably a good inch to inch and a half long.  So far, it hasn't hurt too bad.  Fortunately the medicine doesn't burn going in!

So that is a rundown of my daily and weekly regimen.  The pain is still pretty consistent, so we are hoping that the biologic will help tremendously when we can start that.  The kids are a blessing to help take my mind off of things.  My sweet husband is wonderful to help however he can.  I just try to keep it all in perspective and focus on the wonderful things in our life!