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HONEYSEWS's Photo HONEYSEWS Posts: 627
5/28/13 8:17 P

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Karen, so happy to hear Humeria is working.

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JANISMKW's Photo JANISMKW SparkPoints: (54,172)
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5/27/13 5:55 P

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You must be so proud of your grandson. Sounds like a great kid, and involved with some very meaningful programs.

Since having RA I nap as needed, which is pretty often. I'm lucky in that my husband is very support of this, even encouraging it. When I've had bronchitis I found that napping every day for a couple of hours was the key to getting better. And some days I just feel like I've run into a wall in the afternoon and have to rest.

Of course, waking at 5 or 6 a.m. because of hip or neck pain doesn't help one's energy.
God bless you.

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MIAMIRN's Photo MIAMIRN SparkPoints: (32,903)
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5/27/13 4:06 P

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Hi guys,

I went to a memorial celebration today. My grandson is a 5000 Role Model. It's an association for boys to help them be role models in their school, do community service and learn empathy and learn personal and community responsibility. He marched with the American Flag and sang 'God Bless America" with the group. He shook hands with a one hundred year old World War 11 Veteran who was in Germany and France before and after the war. They talked for a while. It was a mind blowing experience for him! His friend won an essay contest. The assignment was to write about yourself as if you were going to be deployed to the war. He wrote a letter to his mom in his essay that made us all proud and almost cried! It was beautiful. He's known this boy for several years. He swims with him on the swim team and they've played at each other's houses. Nice boy! His mom is a teacher and she invited me to speak about a personal experience I had with Martin Luther King, Jr. at her school last year. It's a small world, even in Miami!

Talking about Biologics. I'll tell you something. I've been onDMARDS and biologics for about six months. The only time I got sick was when I didn't get enough rest. That will be the last time I'll not take my nap during the day. Since I've been diagnosed I've been tired enough to take a two hour nap every single day. If I don't take a nap I leave myself open to infection.

Just thought I would share that.

Have a blessed Memorial Day! emoticon

Love life!

Never, never give up!
“Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense”
-Winston Churchill

“Your beliefs become your thoughts,
Your thoughts become your words,
Your words become your actions,
Your actions become your habits,
Your habits become your values,
Your values become your destiny.”
― Mahatma Gandhi


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SEATTLE58's Photo SEATTLE58 Posts: 4,960
5/27/13 10:53 A

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Janis, I have to say that I haven't had any infections with the biologics, but I've only been on them about 6 months. It possibly helps that I don't have asthma. I'm so sorry that you've had to go through so much trouble with yours. Hopefully you'll get better and better. We know that for how we've felt, that we can only get better! Good luck to you and everyone! emoticon emoticon emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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JANISMKW's Photo JANISMKW SparkPoints: (54,172)
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5/26/13 10:17 P

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So glad to hear your Humira is helping, Karen. And glad to hear of anyone's improvement in RA treatment. I feel kind of like a newbie... I've only had RA for 3 years. It started with shoulder repairs before my diagnosis when my shoulders got so inflamed that my bones cut through my rotator cuffs.
I tried everything else before biologics, but now Humira has me feeling like a human again. It took over 3 months to start working and the improvement has continued. It's been about 5 months now. Still on MTX but off prednisone. emoticon
I have had bronchitis several times this year. Do you all get a lot of infections on these meds? The last 2 went into big asthma flares so had to take short-term, high dose prednisone. Yuck. emoticon
I do tai chi too. It has improved my balance, I know. Supposed to be good for the joints. I take it at the Y.
Best wishes

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SEATTLE58's Photo SEATTLE58 Posts: 4,960
4/24/13 9:22 P

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I think that with MTX, the dose I was on was 35 mg/week and with Leflunomide, I've been on 20 mg./day. I can't be sure about the dose of the MTX, because it's been a while since I've been on it. I was on it since 11/08, off and on until my body got too toxic one to many times. With MTX, are the tabs 2.5 mg each? I can't even remember that. It just seems that I'd take 6 and then 7 and then 8 and then back to 7 tabs per week. We sure are different, aren't we, how our bodies react to the meds?! Thank goodness, like Angel says, that we get monitored so closely.

I have to add this........... We're in the middle of a snowstorm right now!! Are you too, Linda?!! Oh my, I took a walk today around 5:00 and it was beautiful! And, they say it's to get to 72 degrees this Sunday! Mmm, I think it's like,"I'll believe it when I see it"!! emoticon

Edited by: SEATTLE58 at: 4/24/2013 (21:26)
I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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_LINDA's Photo _LINDA SparkPoints: (188,046)
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4/24/13 8:14 P

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emoticon emoticon emoticon
That is fantastic news Karen!! It will be so good for you to get off that prednisone finally!! I hope things get better and better for you! So surprised how the metho is affecting you. People sure have been having trouble with that one and to think I have been on it for 30 years!! Yikes! Is my liver going to shrivel up and die one day from ingesting so much toxic chemicals??? I am curious, what does of Methotrexate were you on??

When one door closes, I simply kick down another one!! Never Give up!
Stand Tall, Walk Proud -Dani W, Fitness Instructor
Do or do not. There is no try- Yoda
Rock bottom became the solid foundation of my life -J.K. Rowling


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ANGEL1066's Photo ANGEL1066 SparkPoints: (70,701)
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4/24/13 7:39 P

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WONDERFUL! I hope this treatment helps you for many years to come. Just be sure to keep up with your oversight testing regime. Anything strong enough to modify this disease in a positive way can also potentially cause problems if not closely watched. Good luck getting off prednisone as well. I am down to 2mg daily, occasionally 3, after having taken it for years, but that is much better than where I began.m God Bless!

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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SEATTLE58's Photo SEATTLE58 Posts: 4,960
4/24/13 6:12 P

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Oh, thank you, thank you, my dear SP friends, I know I have a long way to go before I feel what they call normal, but just the fact that these two little signs of improvement make me feel like Humira is going to be the one to work! My liver showed toxic again, has never before with Leflunomide, but sure did about 4X with MTX. In another month, I get it checked again. I see my Rheumy in 3 months and he said he'll see then about weaning me off the beloved Prednisone first. Oh boy, I am so looking forward to that too! Thanks again gals, you can sure tell that we're in this together, thick or thin!! emoticon emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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BKWERM's Photo BKWERM SparkPoints: (95,472)
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4/24/13 5:09 P

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emoticon is right! I'm so happy for you and glad that you didn't have to start and stop another drug. It took me 4 tries until I found the right one for me (Enbrel, Humira, Orencia and now Rituxan). In fact, I just booked my next two Rituxan infusions today since I'm definitely feeling like I need them.

Anyhow, feel free to complain or celebrate as needed. That's what we're here for.

Have a great night!

Joanna from Dundas, Ontario
BLC20-26 - Amber Amazon Warriors
Eastern Daylight Time (EDT)

Co-Leader of Living With Rheumatoid Autoimmune Disease (RAD)


Happy and healthy people have a better chance to live with confidence and contribute value to the world than anyone else. Don't take that for granted. ~ James Clear ~


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4-1HEALTHYCYNDI's Photo 4-1HEALTHYCYNDI Posts: 11,508
4/24/13 1:58 P

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Karen - So glad you are getting relief finally. I hope it continues to help!

I also agree that it is alright to complain and kavetch here. How can we support one another if we don't talk about the trials as well as the successes.

I'm having a tough time right now but just started Orencia. Hoping it kicks in soon and helps! I'm sick of feeling no energy/more pain. And the steroids?! I'm eating us out of house and home right now. Gotta get control of that today!

Cyndi Gryffindor,

C.A.M.O.Crew, PDT

NEVER GIVE UP, NEVER SURRENDER!

Striving for VES, Vibrant, Elegant & Sexy

www.folhavitoria.com


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MIAMIRN's Photo MIAMIRN SparkPoints: (32,903)
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4/24/13 1:38 P

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HI,

That's FABULOUS! I am so happy for you!! I can't say I know how you feel, but I can imagine you are so very relieved and joyful!

I'm starting Humira after being on Embrel for four months with very little result. Wouldn't it be something if Humira worked for me.

I just came back from PT. I am being treated because the RA spread to my knees, especially my left knee. I'm just starting to walk again after shuffling around. The therapy should help me a lot. Yesterday I went back to Tai Chi. It hurt like crazy but as usual did a lot for me afterwords.

By the way, I don't mind you whining and complaining. Lol. It's perfectly alright with me.That's why we are here. To be here for one another.Isn't that nice! It's a blessing to have support. Really iti is. And you can spread your joy any time to want, as well. I love hearing about happiness.

Again, congratulations! I am so happy for you!!!

Love life!

Never, never give up!
“Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense”
-Winston Churchill

“Your beliefs become your thoughts,
Your thoughts become your words,
Your words become your actions,
Your actions become your habits,
Your habits become your values,
Your values become your destiny.”
― Mahatma Gandhi


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SEATTLE58's Photo SEATTLE58 Posts: 4,960
4/24/13 12:10 P

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Yes! I think I can truly say that the Humira has kicked in! The nodules on my hands have pretty well disappeared, I feel less pain in my hands. I was to my RA appt. on Monday and my Rheumy was so happy for me! It's been since the first of November that I first started with Enbrel with no avail and then 8 weeks later, I started with Humira and now 10 weeks after that, I think (I hope!!) it's starting to work! Now for me to get better and better so I can feel somewhat normal once again! My Rheumy said that I should feel more alive too and not so fatigued all the time. Oh my, I'm just so looking forward to have a better quality of life. Thank you all for bearing with me, for supporting and encouraging me through this hard, tough row to hoe! emoticon emoticon emoticon emoticon

I'm starting my ticker over with going low carb.

"Little by little whittling my middle!"

Karen




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