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Hello! I joined this group to find support since my Dad has RA and I'd like to learn more about how to help him. In August 2012 he began noticing weakness and loss of dexterity in his arms and hands. It has gotten worse quickly since then. Dad has had RA for quite some time and the only time he went to a rheumatologist seeking help he felt that the meds didn't help and he didn't go back for treatment. My Dad (and myself/family) lives in a very rural area and has to drive 2+ hours for most "specialized" doctors/treatments. This deters people in our area from carrying through with treatments and tests. When the problem that began in August got to a certain point he was sent to a neurosurgeon by his primary physician and then, after the neurosurgeon looked at his MRI, etc. he was sent to a neuromuscular specialist. She ordered a muscle biopsy, which determined that there was neuromuscular damage in his arms, but didn't pinpoint what caused it. She prescribed a high dose of Prednisone for a few weeks, which caused him to eat constantly and retain water like the Hoover Dam...but didn't help him regain strength or muscle in any way...and seemed to make him feel horrible, including stomach pain. Next she prescribed Celebrex, which he has been taking for about 3 weeks or so....not sure how much it is helping yet. Although the doctor won't yet make a call on what exactly is wrong, vasculitis and ALS have been mentioned. I am praying for healing and health for my Dad. I understand that he is 73, has had a hard life (almost no health care as a child, not enough nutrition as a child, 32 years as a coal miner and electrician), and health tends to deteriorate for us all as we age...but God is in control and I am praying that He have mercy on my Dad and restore him to some semblance of decent health. I want information on the best nutrition, meds, exercise, and emotional support for him. I am so glad that I found this group and I appreciate any info that you can share with me!
Posted on 01/02/13, 05:13 am
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Reply #1 - 01/02/13  10:19am
" It is wonderful that your father has someone to offer support, and want to help him. Way to many of us do not have that. I have had Osteoarthritis for many years, being treated off & on by an orthopedist, and getting - when needed - physical therapy. Then, my feet started hurting. (My hands are also affected, but before this, I blamed it on the OA). The pain was horrendous. It started when I got out of bed, and continued for hours. Stiff, sore, and very painful, in both feet. I had been taking Celebrex for the OA, and noticed that my feet felt better on the Celebrex. The Orthopedist and Physical Therapist decided I needed to see a Rheumatologist.

Blood tests were done before I saw him, and the test turned out perfect - nothing showed up. But, the Rheum saw my joints, listened to me, and put me on methotrexate & folic acid. He suggested prednisone, but I wanted to stay off that if possible - Celebrex was helping enough (far from perfect, but managable). After a couple months, with no relief, the Rheu doubled the MTX. After a month, I was not feeling any better, so Humira was added. I give myself a shot every 2 weeks. (FYI - that shot burns like crazy)

I feel so very, very lucky that this mix started working in a short time. I also feel so fortunate that my Orthopedist referred me to a Rheum. that believes in listening to the patient, not going by tests alone, and is being aggressive in my treatment, because, it IS working. it is not perfect, my hands are not great, but I can walk without any pain (there is some stiffness and a little bit sore, but nothing is perfect)

I live almost 2 hours from my Rheumatologist, so I understant the distance thing. A lot of us have to do some traveling, but for me it is so worth it. I arrange it so I can meet friends for lunch, can do some shopping. Initially, I was going every month, then it went to 2 months. Good luck to you and your father. I hope he finds something that works for him, and finds it soon. "
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Reply #2 - 01/02/13  1:32pm
" He needs to get back to his rheumatologist. He has to find the right med that works for him. Everyone is different with this disease. Everyone has different meds that work for them. Try to following an anti-infammation diet. It's mostly eating healthy fruits, veggies, nuts etc. limit the junk foods with sugar & salt. Dairy can cause inflammation in some people also gluten. He may be sensative to some foods. Was he checked to MS? Most of us take Omega 3 fish oil and mutli vitamin for over 50. If you do nothing the RA will destroy your body function. That is why the Rheumy's work on getting the inflammation under control to stop the damage. "
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Reply #3 - 01/02/13  3:41pm
" Thanks to both posters! I am irked at his primary physician for not informing him of what could happen if he didn't see a Rheum. and have the RA treated. It sounds like a 'regular' family physician should have known to push for the Rhem. and treatment, which as far as I know, he didn't. I just hope that too much damage has not been done...hope that the progression of the damage can be halted and he can gain some strength and use of his hands/arms. I am going to preach the anti-flam diet and try to help him understand that he will not feel great overnight...but to keep it up and not stop...give it time. Dad seems to think that a couple of doses of a drug or a couple of days of some type of treatment should 'heal' him overnight....not so, as I am sure you all know. I hope he will look for any improvement and stay in there fighting. Thanks so much for your replies and support! "
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Reply #4 - 01/02/13  10:30pm
" Hello neighbor. Where is Cowen? I'm in Charleston myself. I really like my rheumy and can share her details if your dad should ever need a second opinion. Welcome to the group! "
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Reply #5 - 01/03/13  12:04am
" Thank you WVME! Cowen is located in southern Webster County. You have probably known people who have trout fished Williams or Cranberry Rivers? I have an aunt and uncle in South Charleston off of Macorkle Avenue, and my son is in college at Marshall. Cowen is about 40 min north of Summersville. Nice to meet a neighbor! "
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Reply #6 - 01/03/13  8:51am
" That's great! My little photo beside my name was taken at Summersville Lake (my husband took it on a field trip with my son, we don't get down that way too often unfortunately). Hope things are going well for your father. I take Celebrex as well, but that's on top of Methotrexate and Humira. The Celebrex helps take the edge off the daily swelling and pain. I've been on it over a year now. "

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