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RA really sucks

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Rheumatoid Arthritis
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Posted 8/14/2011 7:42 PM (GMT 0)
Hey guys I'm new to this forum but I've had RA for about 2 years now. And lately its been getting alot worse, I'm having issues standing for long periods of time and walking for long distances...heck I'm having issues turning door knobs. My next appointment with my rheumy is in two weeks(it's a new rheumy because my last one and I didn't work too well in treating my RA) and I need help to calm my RA down so that I can get my life back on track (you know start working, going out to social events without having to spend the days that follow laying in bed, and also being able to go to school...I'm only 19 years old) So if anybody can help me out I would really appreciate it.


By the way I'm on MTX, folic acid, Humira, and Naproxen for when my RA flairs up.
Posted 8/14/2011 8:50 PM (GMT 0)
How long have you been on the Humira? I had to INSIST (spelled in caps for yelling) that my doctor change my medicine. He said something stupid like, "well, there are only so many of these type of meds, and when you go through them all you'll be out of luck!". Who cares if they aren't helping?

The humira didn't help me at all. The Remicade didn't help at all. The Enbrel didn't help, neither did methotrexate, sulfasalizine, or anthing else. Cimzia has helped more than any of the others.

If you are still feeling like this, insist to change meds or get a new Rheumatologist. Just because he is an MD doesn't mean he's got a clue!
Posted 8/14/2011 8:55 PM (GMT 0)
Oh, by the way. I tried Naproxin, too and a lot of others over-the-counters, and found Ibuprofen helps me the most. Sometimes I still take Naproxin, but I don't stick to one drug, religiously. If one stops helping, I'll take something else.

I wish you the best! You are so young to be feeling so "old". Good for you to switch doctors, also. You may have to try a few until you find a good one. Don't give up! They may find a cure in a few years, who knows? Keep posting, you have friends here!
Posted 8/15/2011 1:17 AM (GMT 0)
hey De La Rosa
I've been on humira about 6 months and take it once every two weeks, although it only really relives the pain for about 4-5 days then the rest is in the air. And that's exactly what my last rheumatologist sounds like. It sounds like you and me have very similar stories, mtx barely does anything and I've been through a few others like sulfasalizine(worked but gave me massive headaches), mobic(useless), and others(all pretty much useless). Do you get any side effects from the Cimzia? let me know as much as you can, google will tell me what the medicine is but it is always nicer to hear from a real person about their experience. And thank you for the insight, it means a lot.
Posted 8/15/2011 1:45 AM (GMT 0)
The Cimzia is 2 injections, once a month. They work better for me. I was told that it is in a form that is less likely to be suppressed by your own immune system. All of the biological treatments are subject to suppression by development of antibodies by our own "overactive" immune systems. I'm sure Cimzia is no exception. So, far, it has worked better for me than any of the others. They also have a patient assistance that will help you get the medication if you are not insured.

As for side effects, I've had a few gum infections. Nothing that is life threatening.
Posted 8/15/2011 1:51 AM (GMT 0)
that doesn't sound bad. I'll talk to my rheumatologist about it at my next appointment. Thanks for the help De La Rosa
Posted 8/15/2011 2:03 AM (GMT 0)
I'm wishing you all the best!
Posted 8/15/2011 3:00 PM (GMT 0)
Yes..RA does *suck* doesn't it?! I have had it since 2006, sero-negative as well. At one point, I had to tell my rheumy that my pain level was *10* and then he got the hint! Sometimes it is about getting the right *cocktail* of meds.  For me it was Enbrel, Plaquenil and Methotrexate, and I was even going to the gym, it was fantastic! So, it is really about trial and error. Also, if your rheumy is good, he will treat your pain as well, I also have pain medication for when it gets really rough.

Good luck, I hope you find the right combo of meds!

Posted 8/16/2011 1:31 AM (GMT 0)
thanks momto3. I don't really know too much about my treatment options. I know the basics but not too much after that. Hopefully my new rheumy will be able to clear a lot of this up for me.
Posted 8/17/2011 4:00 PM (GMT 0)
Good luck! You will learn along the way, and do your own research as well. Also, be persistant if you are still hurting and the medication isn't working, sometimes we must be our own advocates. I wish you the best!
Posted 10/27/2011 6:08 AM (GMT 0)
Hey, I know how you feel I got RA at 15 I'm now 36. I had great issues with round door handles and still do, I take them off and put the straight handles on. You can get therapeutic wax, to heat up put your hands in then wrap them in foil for about 20 mins, then unwrap, peel of wax it is reusable, then gentley massage and straighten your hands, it helps long term. my advice is don't push yourself to hard but at times keep going even though there's pain, if you stop using it you will lose it! I w told 20 years ago I'd be in a wheel chair within 12 mths, well I've had a heap of ops but I'm no where near a wheel chair. I take humira, methotrexate, prednisone, volarten, folic acid, fish oil, vitamin d and caltrate. I've been on a hundred others meds over the years till we found a combination that worked.
Posted 10/30/2011 4:35 PM (GMT 0)
I agree with the others, there are many medicines for you to try and you
will find one that will help...Good luck with the new doctor, but if he won't listen to you then
find another that will, they are there to work with us, not to deny us treatments...
Many well wishes
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