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#279706 - 01/10/18 03:09 PM IIt's back after over a decade and I'm scared.  
Joined: Mar 2007
Posts: 28
GIMPY22 Offline
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GIMPY22  Offline
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Joined: Mar 2007
Posts: 28
Hello,
I found this forum(again) after searching for it and realized I already had an account from 2007 lol...I had forgotten all about this place, but looking at my old thread, some of you gave me really good support and I appreciate that. I don't think I expressed it(my appreciation) at the time because I was angry, upset and in denial.

I moved from Fl to TX and when I did my jobs(insurance) changed and I decided to try getting off of Enbrel. I did and the symptoms never really came back.
Well, about 5 years ago I started having severe chest pains and back pain on the opposite side of where my chest hurt. I did a bunch of testing at the family Dr. and they determined it was acid reflux.
I lost a lot of weight and adopted a healthier lifestyle, which kept it at bay for a few years until it came back. At that point I quit drinking alcohol, which helped for a few years.
Fast forward to about a month ago, the reflux came back with a vengeance along with all sorts of abdominal and intestinal pain. The pain in my back that I thought was associated with acid reflux turned into more of a burning pain. I'm also feeling very dizzy and lightheaded, shooting pains all over, ect...I actually went to the ER because I thought maybe I had internal bleeding. They found nothing and referred me to a GI doctor who I am scheduled to see next week.

Just a few days ago, my severe heel pain that I used to have came back. At that point it hit me. Could all this be my immune disorder coming back with a vengeance? I think the signs were clear, but I was just in denial about it coming out of remission. I had no idea it could cause chest pain, shortness of breath, or any of the upper body symptoms I was having. Perhaps the most damning evidence is my back pain where my shoulder meets the rib cage.
SO I think it's official, I need to get back on Enbrel.

Here's the problem;
I USED to have good insurance. Now I am a contractor and am using very bad public health insurance. In fact I haven't even paid my premium this month, because the coverage when I went to the ER was non-existent. I don't really see what it is I was paying for.(I have the rest of the month to reinstate if I decide)
Now I'm terrified because the symptoms are starting to effect my work and life and they are getting worse. I can't afford the 2400 a month for what Enbrel costs out of pocket. That's 2/3rds of what I make in a month.
I really have no experience with this because I always had great insurance when I lived in FL. Now I have no idea what to do and no one to turn to for experienced advice.

Can someone with experience please help me figure this out?
I need to find a low cost way to see a rheumatologist and get on some type of DMARD. I make just under 50k a year which is just enough not to qualify for most assistance...but how can I be expected to pay 2400 a month for Enbrel when I make 3000 a month after taxes? frown


Should I try upgrading to the higher level health insurance? I'm still not confident they will even cover enbrel and it's 700 dollars a month for premiums with a 1000 deductible and a 3000 out of pocket maximum, so it's going to cost me 10K a year minimum to treat this. Is that really my best option?

#279707 - 01/10/18 03:14 PM Re: IIt's back after over a decade and I'm scared. [Re: GIMPY22]  
Joined: Mar 2007
Posts: 28
GIMPY22 Offline
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GIMPY22  Offline
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Joined: Mar 2007
Posts: 28
Oops wrong section. Please delete I'll repost in on-topic

#279960 - 02/19/18 05:42 AM Re: IIt's back after over a decade and I'm scared. [Re: GIMPY22]  
Joined: Feb 2003
Posts: 2,846
CB in CA Offline
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CB in CA  Offline
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Posts: 2,846
Huntington Beach, CA
I'm sorry to hear you have fallen out of remission.

I too fell out of remission and was going to be put on Enbrel but just happen to ask if there were any studies ongoing and by asking I found out that my Doctor was part of several studies for AS. After a series of tests, which included blood work, MRI"s and Xrays, I was approved for the study and I am now receiving injections of Taltz -- for free. And the medication is working! Maybe you can ask your Doctor if he/she knows of any ongoing studies in your area

I do sympathize with you about being self employed and having high health insurance premiums and crappy co-pays.. I too am self employed and my plan in CA costs $2250 a month for the three of us with a $2,000 deductible. It sucks that only 9% of Americans buy their own insurance and we seem to be "forgotten" when it comes offering affordable plans. In CA, I only have an option between two groups -Health Net and Blue Shield so, they can basically charge whatever they want with no competition.

#280221 - 04/18/18 12:56 PM Re: IIt's back after over a decade and I'm scared. [Re: GIMPY22]  
Joined: Apr 2018
Posts: 1
MurrayTef Offline
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MurrayTef  Offline
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Joined: Apr 2018
Posts: 1
Did you figure this out, Gimpy? Any updates to your situation? I hope you're doing better!


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