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SEATTLE58's Photo SEATTLE58 Posts: 5,053
2/11/13 1:07 P

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I have my annual eye exams with my Ophthamologist and so far so good. He was quite pleased that there wasn't any sign of damage. Whew! I go in another 6 months for the field vision test once again. And of course, I'm looking forward to hopefully getting off these 3 RA meds once I get on Humira! So sorry about your little spot on your eye Honeysews. Hopefully it's not too much of a hastle for you. It's these kind of drugs that we love them and hate them at the same time!



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HONEYSEWS's Photo HONEYSEWS Posts: 627
2/11/13 12:30 P

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Please make sure you have regular eye exams, at 5 year mark Plaquenil can cause eye problems, it did with me. I have a tiny blind spot from med. At 7 year mark, I went off it, I was on Enbrel already, and was afraid of more blindness. My eye dr. totally agreed with me.
I'm not trying to scare anyone, just want them to see their eye docs.

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SEATTLE58's Photo SEATTLE58 Posts: 5,053
2/10/13 10:53 P

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We are all different, that's for sure and that's why my Rheumy told me that this disease is so tough to figure out on each person because we're all different as far as how we respond to treatment. I'm on Prednisone, Plaquenil and Leflunomide. I was on Methotrexate but with the 4th time being toxic to my liver, that was enough and I got switched to Leflunomide. I got so may mouth sores with Methotrexate too. So far so good with Leflunomide. Some sores, but not near as potent and my liver's been ok too. I started Enbrel 9 wks. ago and it hasn't started working yet, so my Rheumy's having me stop it and will start on Humira as soon as my insurance approves it and that should be within a couple of weeks. In the meantime, I'm still on the 3 RA drugs and will continue to be on them until I could possibly be weaned with once being on Humira. We operate our dairy farm and I haven't been able to do anything on it since before I was diagnosed in 2008. I applied for disability but got turned down and I can see their side. I was judging it on me not being able to do a thing on our farm and they were judging it on me working out like in an office p/t. I could do that, on most days,but on some not, for the pain and fatigue, and that wouldn't be very good for the company. I'm pretty much a home-body anymore. I do the housework and do as much yardwork as I can in the summer. I love to paint and re-decorate, so I do that as much as my body lets me. As far as exercise, I get on my recumbent bike at least 35 min. /day. Sometimes more at 10 min. increments. I can't walk at a decent pace for any more than 10 min. or so or my feet and ankles kill me. Shopping's ok with the cart. Thank goodness for that! emoticon I'm looking so forward to getting on Humira and for it to start working too. I'm to the point where I have to have something more. My Rheumy has been pushing a biologic and my previous Rheumy too, who retired. I was holding out because of being so scared of the side effects of the biologics and both of my Rheumy's told me that the biologics aren't that much more if even less than the 3 RA drugs that I've been on. Also, I've been scared of the expense, and with the help of the Enbrel co. and now with Humira already helping me, we're not in that bad of shape at all. It all comes down to what we can live with. I've been missing out on the normal aspects of life, what other people in their 50's are doing. For the pain that I feel I can tolerate, my family can't take it. It's hard on them to see me grimace from time to time and moan and groan and they're sad over me not being able to do things like I used to. So it's whatever you feel in your own heart. Good luck to you!



"Little by little whittling my middle!"

Karen




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SHES5150's Photo SHES5150 Posts: 30
2/10/13 10:43 A

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Your treatment goals are going to be different from other folks. For me, my RA is advanced so far in certain joints that, even though my test results are good and my RA is controlled, I still have pain in the worst joints. My treatment goals are met, which was to get the disease process under control.

You may want to talk to your doc and discuss what exactly your treatment goals are. It is up to you to decide how much pain you are willing to put up with daily. What is ok for you to deal with on a regular basis? Remember that YOU have the ultimate say in your health, NOT your doctor. (Sometimes doctors tend to forget that we know our bodies better than they do!)

RA sucks, no matter how bad you have it, no matter what age you get it. It just sucks. What made the most difference for me is reaching out and talking to others in the same boat, as you have. Keep fighting the good fight!

Edited by: SHES5150 at: 2/10/2013 (10:45)

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2/9/13 11:04 A

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I guess what I'm wondering is if remission is the goal and your tests come back good are you out of pain?

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KRIS-KDK663T's Photo KRIS-KDK663T Posts: 495
2/9/13 7:45 A

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"Good enough" is definitely relative. For me, it's that point where the meds are doing all they can do, and I am doing all I can do to relieve the pain (massage therapy, creams), maximize my movement (stretching, exercise), and follow the dietary plan I created for myself (eating good food instead of junk). That's the hardest part for me -- doing everything I am supposed to be doing. LOL.

I am considered to be in remission - please know that it can happen!! I was 37 when I was diagnosed in 2004 - 3 days after I quit smoking. Once the nicotine was out of my system, my body reacted - immediately - and my muscles and joints seemed to shrivel like a 200-year-old apple from the effect. I woke up the next morning and could barely move. I couldn't even hold a pencil. I was devastated - I have four kids and competed taekwondo on a national circuit and thought I would be like that for the rest of my life.

Over the past 10 years, I have worked hard to reduce my arthritis symptoms, lose weight, get healthy overall. It works - when I do what I'm supposed to do. I am way too heavy right now, and I can feel how that stresses my joints, so I have started a slow but steady workout regimen to strengthen my muscles. I lift weights on the bowflex that I bought a few years ago (starting light and few reps and building as I can), I've started a salsa dance aerobics DVD that I got through the SparkStore (the set came with Salsa, Jazz, and two others I didn't even look at because they're way beyond my abilities at the moment - lol).

It takes time, and energy, and willingness to invest in yourself, but it can be done!

I was able to stop taking methotrexate about 4 years ago, and was completely off meds for about a year-and-a-half. About 6 months ago, I started taking etodolac (Lodine) again, once a day. That's from the effect of carrying 253 pounds on my 5'6" frame instead of the 175 I used to weigh. But that's the only medication I take, other than daily vitamin and calcium supplements. I stretch for about 5-7 minutes before I get out of bed each morning (longer when the weather changes). For the most part, that's the worst of it.

I got discouraged, too, when it hurt so much, or the frustration level built to a point where all I wanted to do was explode. Hang in there! Know that it *can* get better and that you do have some control over what's going on.

Hope this helps -
emoticon

Kris
It's a great day to be alive!
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"I can do all things through Jesus Christ, who gives me strength." Philippians 4:13


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HONEYSEWS's Photo HONEYSEWS Posts: 627
2/8/13 7:22 P

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When I was at my worst, before going on Enbrel, I would get in the shower first thing and enjoy the warm water on sore joints. It helped. Also my dr. told me to try fish oil for inflamation, i take Schiff's Mega Red, krill oil. And I use a rub on to the affected area, Biofreeze. I feel these all help, but, for me, right now Enbrel is what has my RA under control. I hope some of this is helpful.

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DEDICATED2HIM's Photo DEDICATED2HIM Posts: 3,553
2/8/13 6:23 P

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It's a hard question....and again the answer is going to be relative. For some people a day without tears and being able to make it to the bathroom on leg power is a good day. Others have higher expectations. So I guess the answer would be what can you more or less comfortably deal with ? Some people can't tolerate pain at all....some people can. The ansewr to this question is as individual as you are. For example, I am fairly crippled by the disease....HOWEVER, I don't have to do anything but make it from my recliner to the bathroom in a day, so for me to tolerate more pain is possible and acceptable. If you have to function in a job or at home with small kids...your answer will be different.


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2/8/13 3:18 P

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My friend said to me today 'It sucks that it (arthritis) affects your life so much' and I started to think yeah it does.. but to what degree can I really expect to be cured? What really is remission is there really a point where I wouldn't have swelling and pain?

Now I will be the first to admit that I have a light case of RA and I don't like to bitch about it alot because there are so many people who have it worse than me, I'm not in a wheel chair, I can work and I can do my exercise alot

But really what should my *goal* be with treatment? Am I at the best that I can be?
I still have morning stiffness for probably 2 hours in my hands and ankles.. and I'm still taking pain meds 2x day (would take it more cuz it isn't totally taking away the pain but 2x is the max the bottle says...)

I am on the max dose of plaqenil and max dose of tramodol daily..

I was on lefluminide which worked great but gave me migraines..
Tried methotrexate but threw up and was dizzy the whole time I was on it so I didn't last more than a week or 2... don't know if it worked...
and I can't take sulfa drugs due to allergies so that eliminated another med my doc talked about...
My doc said biologics have too many side effects/cost for my level of RA....

what else is there? I can't keep going on prednisone...

So.. do I just face that this is it.. this is as good as it gets?

Thanks for your input and I do appoligize for my whining... I do acknowledge that I'm a lucky one...

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