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Old 03-14-2012, 09:10 PM   #1
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Thumbs down Appeal of partially favorable decision and more...

We filed for the appeal in January and now the brief is almost complete. In the meantime, I finally saw my third rheumatologist and thankfully she was awesome and knew her stuff. My problem was my blood tests were negative for RA so they would send me on my way saying your fine, maybe it's fibromyalgia. I was so frustrated so I got a recommendation from my pain specialist and took pictures of my extremely swollen hands with me as proof to the first visit. She said she didn't even need them because she could tell they were swollen. If i had this piece of the puzzle, I am sure it would have been fully favorable but no thanks to doctors who don't know what they are doing, it's scary.

I am now on scary medication, Methotrexate and Folic acid for the side effects. Just started with the new med and she said it would weeks to months until I see any results. Have to have my blood checked every month to make sure it's not affecting my liver. I am so glad to get some answers just wish I didn't have to take this scary med. Anyone have any experience with this drug?

I have not posted in a while because of construction in my house and pain and fatigue. Back for now so a big hello to everyone.

 
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Old 03-15-2012, 10:57 AM   #2
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Re: Appeal of partially favorable decision and more...

Methotrexate has really made a difference in my energy levels although I also take plaquenil. I do the blood test thing too, I have a different autoimmune condition but I do believe that these drugs have helped me tremendously with few side effects. Good luck with your appeal.

 
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Dobie (03-16-2012)
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Old 03-15-2012, 11:19 AM   #3
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Re: Appeal of partially favorable decision and more...

Nice to see you again Dobie. No idea about the meds you mentioned, but I wish you good luck with them and minimal, if any, side effects. I hate Rx meds too as do most people Dobie but sometimes our health challenges leave us with little choice. You must always carefully weigh the risk versus benefit ratio when it comes to Rx meds. I mostly take psychiatric meds. I don't have the blood work done as frequently as you do but my doctor is also a little concerned about my liver also. It seems like medical science today can mostly manage chronic medical conditions. I just wish they could cure a lot more things where you would not have to take meds or as many. I think both Ferd and Monster Pete take an incredible amount of Rx meds daily to manage their health conditions. I am sure both of them would rather not but we do what we have to do sometimes in order to live the best, most comfortable life possible.

 
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Dobie (03-16-2012)
Old 03-15-2012, 08:49 PM   #4
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Re: Appeal of partially favorable decision and more...

You are not alone, I too have RA with negative blood work. It took me 7 yrs to finally get a diagnosis. I first developed Raynaud's in my late 30's, then the joint pain and swelling. My rheumatologist said I too had fibro,or some sort of Poly arthritis. He retired, and I started seeing a Rheumatologist who had only been out of school for a few years. He looked at my hands, took X-rays of my hands and right off said I had RA. He said that 10 -15% of people who have RA have negative bloodwork, and half of those people will never have positive bloodwork. All of this has just been taught in the last 10 yrs or so. I just moved across country and the first thing I looked for when choosing my new Rheumatologist was how long ago did he/she graduate. Mtx is kinda a scary drug, but the damage that RA can do to your joints is much more scary. I've taken the pill form, but think I'll have the infusions now to avoid the nausea I had with the pills. Good luck, I'm glad you found a Dr who knew to think outside the bloodwork.

 
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Dobie (03-16-2012)
Old 03-16-2012, 05:05 AM   #5
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Re: Appeal of partially favorable decision and more...

Quote:
Originally Posted by gdiluca View Post
Methotrexate has really made a difference in my energy levels although I also take plaquenil. I do the blood test thing too, I have a different autoimmune condition but I do believe that these drugs have helped me tremendously with few side effects. Good luck with your appeal.
Wow, that makes me feel so much better. Thank you for responding and best of health to you.

 
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