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does anything really work?
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spynless posted:
I was diagnosed 13 yrs ago. I started taking NSAIDS (still do). Tried Plaquinel-didn't work. Next was Arava-didn't work. Then Humira, Enbrel, Rituximab (shall I go on?) I've been on Methotrexate for several years, as well as Prednisone (20 mg daily). Can't do Orencia. About the time I started with the Rituximab, I started having heart issues. I was forced to retire, and am now on disability. I love my dr., but even he is frustrated by the lack of any response by any of these meds. And recently, the depression has been getting more severe. I know I sound like a whiner, but it's hard for those who don't have it to understand, especially if you look perfectly fine. Just suck it up, or yeah, I know exactly what you mean, I twisted my knee playing tennis last week. Is it normal to feel like this?
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allie_bf responded:
Yes, and no. Nothing will get you back to the point where you were before the RA set in, and it's normal to feel that loss. Having that depression deepen even now, thirteen years later, is not so normal, and something to be dealt with so that you can get to a point where you can enjoy your life more. Ask your doctor about treatment options for depression, and follow up on them, as well as continuing to work with your doctor to find a treatment plan (and it really should be a plan, not a single drug) that will be the best one for you. Once your depression is less intense, you may find that your tolerance for the residual pain is more manageable. It may be helpful, if you have not already done so, to see a pain specialist, at least for a referral, as pain doctors typically have more experience with working in alternative/complementary therapies, and behavioral medicine, into their treatment plans for arthritis patients.
 
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min4kids responded:
I was only diagnosed a few months ago and seem to be on your journey. I am on plaquenil and sulindac and they are definitely not helping with my current flare. I want to ask for some of the drugs you mentioned here. I hope that something will work. But I have been frustrated as you say with those who just don't get it. I've been given advice from a guy with arthritis, who told me to try celebrex, it works wonders. I took Celebrex for 2 years for my "bad knees" and it never helped! And even my mother- in- law just last night told me just exercise as much as you can and don't take all the drugs they give you. WHAT?! I wonder too, if it is normal to feel this way, I was so angry last night after receiving so much unsupportive and unhelpful feedback from people who DO NOT understand this disease. I don't understand it yet, and I amt he one who has it! I amt hankdful for this site to get input from those going through it and walking in my shoes. I hope you know it is norma; or should I say, it is our "new" normal. Hang in there! Min
 
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gwjlmj3333 responded:
I was just diagnosed 3 weeks ago and I am able after 6 months to wear my wedding rings again! The swelling in my hands has just gone down. I am on methotrexate and prednisone. I am still having issued with my joints and back . I live in NJ and it is really cold and I don't think that helps. I just think like everyone else has said, you have to have a positive attitude, take your meds, visit your dr. and get as much exercise as you can. I go the gym 3/4 days a week and hurt the next day, but eventually feel better. I am hoping to get something for the pain as sometimes I just have to lay down and rest. I am not used to doing that, but am learning as I have been told on these boards, that you have to know your limitations! Keep positive and keep talking on these boards! We will support each other!!! Lynn
 
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nancymillerellis responded:
FYI - my rheumy told me (and I've read other research that supports it) that, while exercise is important, I should NOT exercise until it hurts. I am supposed to stop as soon as it starts hurting. No Pain No Gain does not work for RA - pain means stop or you can do more long term damage to yourself and your joints. Nancy
 
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NE_Rosie responded:
Hey MIN Exercise will help, but only as much as your body allows. I do find when I haven't put anytime in daily for some exercise (even if it's just some minor stuff) I feel worse. I've discovered Yoga and it is not as easy as I thought, but I'm enjoying it. I have a really great trainer that I see 3 days a week and he is a god send! While he pushes me he knows when to push and when to stop. Strength exercise has made a big difference for me. I really believe to understand RA you have to have it. My family and friends may get it eventually, but I am always amazed at the ones who make comments based on thinking it is the same as OA. I'm sure we will all EVENTUALLY find the right drug combo to help us make it through the day. Happy Saturday to ya'll.....Rosie
 
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dsgroi responded:
Good question! Just like you, I have tried everything legally available in the US and nothing has worked. It is the story of my life. I was diagnosed 23 years ago at age 12. That's A LOT of time to try every med/treatment available. However, you say you were playing tennis, so you must still manage to be active and get out and about. Good for you! In 23 years, one thing has offered me some relief and comfort and that is deep tissue massage with different modalities (deep tissue massage, hot rocks, cups, etc.). My massage therapist is wonderful and very knowledgeable. Much of what he does, a physical therapist does. I wish I started this weekly massage 20 years ago! (Best wishes to you so you aren't like me--20+ years living with severe, severe RA and still seeking something that works!)
 
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florry responded:
My mother was diagnosed with R/A and scleroderma about 5 months ago. She is 90! Her dr. was giving her methotrexate and said she wasn't a candidate for some of the other medicines. The enzyme numbers in her muscles were very high and were just starting to decrease substantially. Her rheumatologist moved and the new one is stopping the methotrexate and giving her Neurotin. Does this sound right?. I read they use it for fibromyalgia. Has anyone heard of taking it for R/A? My mom was quite active before this hit her.
 
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aeocava responded:
I am where you are. It's been over 16 years for me and I have also tried everything. If you can swallow, inject or rub it in I have done it. Honestly I am waiting for technology to catch up to me. I asked my doctor about some new meds they are testing and he said that they are biologics and obviously I don't do well on them so not to bother. I am doubtful they would work also. I wish you all the best and will keep you in mind.


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