Wednesday, February 09, 2011

RA Update

It has been over a year since I entered the world of full-blown Rheumatoid Arthritis. There were signs earlier, but it was December 30th, 2009, when I sought help because of the intense pain and swelling in my hands and feet. Last year at this time I was still enjoying the benefits of a hefty steroid shot and would be begging for one every other month if I knew the docs would allow it. But steroids are not the solution and the side affects too great. 

Last spring I started Methotrexate but was taken off after my blood tests showed my liver wasn't happy. Humira was the answer, one injection every other week. It worked from July to September and I felt good. I thought maybe, just maybe, I was getting close to remission. But the pain returned, the swelling came back and the NSAIDs were not controlling the pain. Also, I decided to find a new doctor. My old doctor was ok, she listened sometimes, but she seemed more interested in just my physical reports and would dismiss my concerns and questions more often than not.

Last month I visited the new doc and she seems wonderful. She spent a lot of time with me and even ordered x-rays of my hands and feet. My other doc never x-rayed anything. I'm thinking that if my hands and feet have arthritic joints then an x-ray would be a no-brainer.

She took me off Humira, and the NSAID I was on. She prescribed Celelbrex and Cymzia, after labs she added vitamin D because I'm low. 

So, two weeks later I've yet to start the Cymzia because, of course, it is incredibly expensive and you just don't go to Walmart pharmacy and get you script filled. I am getting a free 12 week supply that has to be delivered and signed for. I have a "case manager" who is supposed to be calling me soon to see if the Cymzia can be delivered to my doc and then my husband can pick it up. If not then I will have to take a day off to receive the delivery. 

I have seven doses left of Humira. The value of those seven shots is about $4000. Because I received co-pay assistance from the manufacturer, I paid just $5 for for each shipment of six doses. I will be donating those doses to my doctor's clinic. They give them to people who do not have insurance. Yay! I hope they help someone.

So I am waiting to see if Cymzia will change my life. I hope so. In the meantime everyday is pain and stiffness. My mornings are tough. I feel the disease invading joints that were pain free a year ago. I wonder where I will be with this disease in five years? But I don't entertain that thought for long. I have things to do!

13 comments:

Cathryn said...

Isn't this typical? Medications cost more than most can pay. I'm heartened by the fact that you are donating your leftover medications to help others. That's what I do as well.

I hope the new doctor is helpful. You are often in my thoughts and I hope you are having more good days than bad. *Zen Hugs*

Angela said...

Oh, I hope it works for you! Glad you found a doctor that you are more comfortable with.

Okie Book Woman said...

I'm hoping that you'll find some relief. So sorry that you're dealing with this.

Squirrel said...

Really hope this is the one for you!

The Planet Pink said...

I'm sorry to hear of your struggles. My mom suffers from RA and Fibromyalgia and she takes Embrel (sp?). It helps her, but she still has alot of pain and swelling in her hands. I hope and pray you are able to find fresh relief.

Territory Mom said...

I can't imagine what you are going through. I'll be praying for you.

Ninny said...

I'm so sorry for all your pain. What a crippling disease. I see it hasn't crippled your spirit. Good for you!

Liz

The Castro Family said...

Oh! I am so sort to hear that you are fighting this terrible stuff! :( sometimes, in addition to medicines, something like acupuncture or herbal remedies seem to help. A friend of mine suffers the same ailment, but is doing better. Please keep us informed how it goes- we'll be praying for you!!

Whosyergurl said...

Oh, Joan, my heart goes out to you. I believe I have told you before that one of my best friends lives with RA and she is ten years older than I am- she is 62. Her path has been much the same as yours. It is difficult to see anyone go through it. I hope you find something that works for you. For now, my friend is feeling pretty good. She is trying to get out and walk for twenty to thirty minutes twenty days out of the month. Like you, her mornings are difficult and she gets out to walk later in the day.
HOW do you keep your comforter uncovered with your corgi kids? Is your bedroom off-limits? We try to keep the bedroom door shut and let Chelsea in on occaision when we are in there. Otherwise, she gets into trouble- last weekend she ate three packs of gum that I had left on the bed when we returned from the store. (Then she barfed.) Another time, she ate some of dug's medicine and was very sick for about ten days.
Hang in there. I will encourage you all I can! xo, Cheryl

That corgi :) said...

I do hope that new medicine works and you get relief from your pain. I think you have a great attitude about not letting the disease 'control' you and trying to live the best you can with it.

(loved the pictures of Chloe in your post from 02/05; she looks a lot like Koda and has similar characteristics in personality :)

betty

Taz said...

I truly hope your new med will help you. I've never heard of it so I'll be learning about this pronto. I think it's wonderful you donate your meds. So many can't find help due to cost of treatment. Best of luck! T

shawna lynne henrie said...

i was tested for RA, cuz my dad has it...my bloodwork came back positive one time, then this last time negative. my doctor said i wasnt making the antibodies for some reason. she said stress can play a big role...so i am waiting for it to be a problem. i am sorry you have struggled with it so badly, but grateful you have good medical care available to you. good luck and i hope you can get some good relief!

Intense Guy said...

I hope the new meds have arrived and you are getting some relief.

I find it sad about how your last doctor just saw you as a patient chart of numbers and not a person with questions and concerns. I hope the new doctor continues to impress and even moreso - finds a way to help you manage your RA.