Monday, June 15, 2015

I am A Medical Failure? #Fail




     Ten years (in August) I have been diagnosed with RA.  I have been through all of the traditional drugs to treat my RA.  At my last appointment with my Rheumatologist I requested, we went over the pros and cons and we ultimately decided to, take me off of my Orencia.  It was just not doing anything for me.  I have been stable for so long that I can FEEL when there is a difference and there just wasn't one.  That's a lot of money to be throwing away for no result.

    I saw my doctor on Friday.  She looked at the still flaring hands and feet and said that it was time to start again.  She looked at my record.  She listed the LONG list of meds that I have gone through and that have failed.  She looked me directly in the eye and said "We have exactly 2 options left. Actemra and Xeljanz, everything else has either failed, and the one other drug we have left is Remicade and that has to be taken with Methotrexate so we have to rule that out."  We went on to discuss the two options- both are different pathways, both are home given rather than infusion.  One is a shot, one is a pill.  Dr. Chase said that given the choice, she would go with Actemra only because it's been around longer so there's been more time to find out any side effects.  I trust her, so that's the way we went.  But let's face it- either/or: one fails and we move to the next one and then that's it.  We will be out of options unless something great comes down the pike.

     For a moment, when she outlined where we are and what my options are, I just wanted to cry.  I felt hopeless, like a giant failure.  I know, I know.  It's nothing to do with me-it's my particular RA.  It just took me from the moment she said that until I got home to get to that point.  I responded beautifully to Methotrexate and would still be on it had it not begun attacking my liver.  That is what bothers me the most.  Most of the rest of the drugs were okay at first but then just stopped working.  Some, I never even felt a difference.

     As for the pain meds- I am already on SO much from my perspective.  Pain meds, anti-inflammatories, Postheraptic neuralgia meds and muscle relaxers- plus Lasix for the constant water retention/swelling.  From here we would have to go to narcotics and I am just not ready to do it.  I don't want them.  It's bad enough that I have to carry a case when I travel just for my meds, it's bad enough that I have to take a plethora of pills morning, noon and night.  It's bad enough that I have enough "fog" from the Fibro and RA that I lose my words.  I am not adding the haze of a narcotic on top of it.

     Today I call Actemra and set up their lovely co-pay card (thank goodness for these!) and then talk to my pharmacy about sending the first 3 months worth of shots.  We shall see what happens but hopefully, this one will be "The One".  I am figuratively crossing my fingers for it.  

5 comments:

joan said...

I was diagnosed six years ago and I have been on mtx, humira, cimzia, and embrel. All have failed. I started Xeljanz in March, received and medrol shot in April for a sinus infection, and have never, ever felt better. I don't know if it's the Xeljanz, steroids, or a combo. All I know is for the first time in six years I am nearly pain free.

I hate the constant "failure" of this disease. I too look down the road and wonder what happens when they all fail?

I hope your new treatment is your "sweet-spot"!

DustyandKate Heumann said...

Our prayers are always with you Darlin' and you know that. We also know that is easy to say and when you are in the middle of a super-flare, I totally realize it is easy to question whether those prayers are worth a crap. All I can do is promise that each in its own way does help. We love you so much and are so proud of the strong woman you are.

Julie Faulds said...

Joan- I am so glad you are having success with Xeljanz. It's so wonderful to hear when someone finds something that really works for them. Medrol is great, isn't it!

Daddy- thank you. I love you too.

Wren said...

Jules, have you tried Tramadol for pain? It's a synthetic narcotic and causes no high, no brain-fog, etc. It works pretty well for moderate pain and can take severe pain down a notch or three. Maybe worth a try?

I hope Actemra works for you, and quickly. So far, Humira's failed, and Enbrel is in the process. I have to stay on it for another three months, though, as the VA requires a 6-month trial for biologics. Sigh... I guess it might kick in eventually ...

Wishing you the best, Jules. (((hug)))

Chris and Bob said...

I have just been diagnosed with RA after many years with "Undifferentiated Connective Tissue Disorder". I am afraid of the roller coaster ride of drugs! Nothing I read gives me confidence in a sure treatment. There isn't one.

Good luck on this drug!

Chris