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New diagnosis finally in....

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Chronic Pain
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Posted 4/22/2013 11:30 PM (GMT 0)
As suspected, it's Ankylosing Spondylitis, and a few other auto-immune things thrown in. Rheummy wants to start me on Humira, as soon as he runs all the screening labs. Good news is, he is not shy about pain relief, and he will take over from my regular PCP for that.

Sorry I haven't been that active here lately, let's just say there's been some family drama, which has been resolved. Plus all the running around, and I got severe fatigue for a while there, like I'd taken a couple of Ambien during the day. Weird, but it's been chalked up to stress and the steroids, This should pass with a med adjustment.

Now I get to figure out how to pay for a quite expensive new drug, with no insurance, and no money. I shudder to think of the hoops I'll have to jump through. And this stuff won't even reverse the disease, it's just to help stop it from progressing.

But I have managed to lose the weight I initially put on with the Prednisone that I'm still taking. I gained about 15 pounds at first, but I'm back down to 251, where I was when I started. Now I'll just keep doing what I'm doing and hopefully get a little more svelte, which would help. I really upped my water intake (mostly because the prednisone gave me dry mouth), and the water in the stomach kept the hungry monster at bay. Kinda.
Posted 4/23/2013 12:12 AM (GMT 0)
When I took Humira I had a $300 copay that was covered by a patient assistance plan. The drs office filled out the paperwork and passed it along to me. Sorry I can't give you the name, but it's been yrs since I took it.

I hate that you have an autoimmune disease, but I'm glad you have a diagnosis. I hope your treatment plan will decrease your pain.
Posted 4/23/2013 12:29 AM (GMT 0)
Go to the Humira offical website and look for assistances programs, they might have one, but if you don't look you won't find out and sign up for their e-mails and community maybe...Hope this info helps just do a google search and the maker of humira should pop up for you...
Many well wishes.... are you on the methotrexate? for me the methotrexate helped so much after I got thru the first month of side effects (Headache, ect...) but alais it was to be short lived for me, but I hope I can go back to it...Keep us posted we do care...(old chart is here!)
Posted 4/23/2013 4:45 AM (GMT 0)
I am on Humira and they do have a patient assistant program. I have insurance so I don't know how much it is without insurance but all the details are on the website. I signed up for it myself. My doctor did not have to do anything. It is possible it works different without insurance but I specifically remember there was a question on the questionnaire about if you had insurance or not. Also I think it listed prices of how much it would pay out.

One thing you may need to know is with Humira some diseases need a loading dose. With my disease first time I took four shots, then two weeks later two shots, then went to the matiance dose of one every two weeks. I am now being upped to one a week if my insurance will cover it. Good luck
Posted 4/23/2013 5:41 PM (GMT 0)
It is not uncommon for some pharma companies to have 2 programs in place. One for people with private insurance and one for people who have no drug coverage at all.
Posted 4/23/2013 8:58 PM (GMT 0)
Humira offers assistance to people with no insurance. What I have found in that instance is its first come first serve on who gets the money. If they run out then they tell people they are out of resources because they ear mark so much money for the assistance. If I were you I would contact Humira directly. It is very expensive. When I was taking Humira injections it would have cost around $8,000 a month had I not had a prescription card that picked up the tab except for the co-pay. There is no generic available either.

Take care....Susie
Posted 4/23/2013 9:05 PM (GMT 0)
Just wanted to also suggest that you chat with Sherrine who is one of the Mods over on the Fibro board...she has AS and handles it with vitamin supplements, daily exercise, and a muscle relaxer when needed. So, just know that there are other ways to treat without using the Humira if you can't get it covered...

Personally, I would try to get by with the least amount of meds that have the greatest side effects.
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