Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I am 46 years old and I have been dealing with RA since i was 12. Although I was never fully diagnosed with Palindromic RA until 2011, nearly 30 years later. My parents sent me to our primary doctor numerous times over that span of time and it was never rightfully diagnosed as RA. Everything from calling it growing pains to the effects from my regular daily abuse as an athlete. As my younger years went by the symptoms gradually worsened. I did not have any health insurance because I was unable to afford it and still be able to feed myself and later my children. I then got some minor assistance through government resources and went to the doctor where I feel he had the impression that I was a pain med seeker. Because, one day it would be my knee the next time it was my hand and it was regularly not the same place.I still did not get any relief and then "gave" up and then tried to live with it. It wasn't until I finally got a better job that provided health insurance and then pursued the issues of my health. I did finally get a doc that would listen to me when I said I had what I know now as flares. Not only from being able to set up a drop in visit when I had a flare but from my constant diligence that something was wrong and they had to listen. From there I was sent to my Rhumy and she is and has been a great help. Here lies the current frustration.At first I was prescribed Celebrex and since been taken off . I then have been taking Hydroxychloroquine (plaquanil) for a couple of years . I have been also taking Methotrexate , with some minor relief yet my rapid 3 scores as 14 and I have more chronic symptoms. And now I have been prescribed Humira, which my insurance is doing their best to not allow. And as most of you know the side effects of my medications are nuts. From being constantly sick, the Metho burn out and GI troubles and from feeling I never get the enough sleep. I understand that a lot of my problems are with the time I took to remedy my problems, But my good days are few and far between. My major issues are in my hands and wrists where I have a few nodules the size of "shooter marbles" and also smaller pea sized ones on several other joints including my toes. I work and still want to stay working, but the daily pain from using my hands and being on my feet really suck..to be polite. I need this job for the insurance so I can keep up on my care, let alone my family. I have been looking for new work. When i fill out the app. and they ask if I have any health issues that would prevent me from doing the job, I have to put down my disease. Not only because its ethical but also because I use FMLA due to the amount of work I miss at my current job.But being that I am not Kreskin...what can I do without hands? I do not qualify for any type of disability because I am currently employed and make too much for the guidelines. I do realize I need a major lifestyle change but I have no idea where to start or how to keep my insurance if I career change or stop working, which is inevitable. I'm in a jam and I have major life choices to make that involve not only myself but my family. I appreciate he ear and the time you have spent reading this rant.....but, for the time being, I am going back to pounding my head in the wall.
Perhaps inquiring whether company that makes Humira provides financial help for those in need. Some companies do.
So many of us had the exact same problem at one time or another.
I understand your predicament. Your doing what you have to do.
My hands are problematic also. Drives me crazy. I'm not sure what can be done. We can try topicals or patches on other parts but the hands well.....thinking of trying the arthritis gloves.
Your really in a dilemma. I'd stay on the dr & insurance for that Humira. I do not understand what the problem is with insurance.
They are making it tougher every year it seems.
Have you spoke with your insurance?
Many of us have learned that often we have to nudge it along or be our own advocate. Had a hold up on one of my meds. After a long wait & misery I called the insurance only to discover the hold up was on the doctors end. No longer with that doctor but I assumed it
Was strictly the insurance.
Would Enbrel be any easier to obtain? Knowing doctors usually choose one or the other when starting Bio's. Enbrel provided relief very quickly for me. Side effects where not pleasant but manageable.
Really helped with the exhaustion/energy problem also.
Insurance is out of control. I truly hope you get help ASAP.
Have you brought up disability to you doctor? No one chooses to go there but there are times we are left with little to no choice.
Exploring jobs better suited is always recommended but not always obtainable. If your not already looking perhaps you should if only for peace of mind. Perhaps putting a resume out there.
Really only you know what's best for you.
Hang in there.
Sammy
Thanks again, your input is much appreciated :)
Have you tried injectable Methotrexate. It might be easier on your stomach. I was diagnosed fairly quickly, which I have come to realize is a big deal. First, it was methotrexate. It did NOT help at all, so a few months later, Humera - or Enbrel, I can not remember which came first, I have been on both. The first 5 biologics I was on did help a lot. Trouble is one would help my hands, the other my feet. It was a LOT of help, but not for both. I am now on Rituxan, which helps both my feet and hands.
I would talk to whoever handles your insurance at work, and ask them to intervene. If it is a big company, the insurance might listen.
My husband would like to retire at 65. But, he married a younger woman (by 16 months), so he has to continue to work so I have insurance. RA, as we all know, is not a cheap disease to treat. And, it usually leads to other specialists.
Hopefully, you can get some relief soon. Stress is not good.
The insurance company strategy seems to be to try everything to delay or prevent your getting your hands on the more expensive drugs. You have to be persistent. I know, that's often the last thing you feel like doing. Here's a recent thread about this: http://www.dailystrength.org/c/Rheumatoid_Arthritis/forum/21305695-same-songdance-insuranceprime-spec-pharmacy
You should qualify for Humira's patient assistance program. They don't ask about income, assets, any of that. The only problem would be if your insurance was through the government, especially Medicare or Medicaid. I have my insurance through healthcare.gov, and even with a subsidy I have co-pay assistance for my biologic. From what you say, sounds like you have employer-sponsored private insurance, so you should be fine.
I'm so sorry you have been dealing with this for so long without any medical help. I wonder if you would have been diagnosed in childhood had you been a girl.
Many or most of us have been looked at askance when someone decided we were drug seekers. Last time for me was when I needed needles for my methotrexate. I see you don't list any pain meds among your prescriptions- not even prednisone or a NSAID.
Many of us are dealing or have dealt with the work problem, too. I have recently been cut to part-time. It's financially catastrophic, and I'm looking hard for a new job, but I have to say, I am feeling better working three days a week instead of five. No easy answers on that one. Some folks have gotten disability on the first try, others have had many go-arounds. I think it depends heavily on the individual judge.
I'm glad you found and joined us. Stick around, OK?
After my 3 month trial period of DMARDS. I didn't wait the full 3 months.
That was it after 2 yrs on Enbrel it no longer worked. Obtaining the med of choice was extremely hard. Insurance dictated what I had to try before they would cover Orencia, the treatment my doctor & I decided on. Cimzia was there choice & caused me a bad reaction.
I listen while in the waiting room. I have a Rheumy with a great rep for putting his patients first. Last visit there was a call from a patient that had problems with insurance coverage. He was told to exhaust all options on his end first with the insurance. I sensed just listening to the office that there were more difficulties with insurance companies.
It was also Dec. month before the new year.
If possible You may want to call Humira on your own & explain. If anything you may get some good advice. The doctor has how many patients? You never know.
I swear this disease requires more waiting & patience. Wait to obtain the treatment, wait to see if it works....enough to cause anxiety & depression. Perhaps I'll make a notation next to the questioner at the next visit on those 2 symptoms. Caused from insurance & waiting.
Keep us updated.
Sammy