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New-diagnosed 5 years ago....

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Rheumatoid Arthritis
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Posted 6/17/2010 4:35 PM (GMT 0)
I've just found this site. I'm at work right now, it's raining cats and dogs and my RA is so bad in my hips and ankles right now. I wanted to (finally) connect with others that understand my pain! Another person said, do people yawn when you say RA? It does seem like most people don't realize what a horrible serious condition it is, especially when it comes to people who aren't yet "crippled" from the disease. Maybe that's why they don't see it's seriousness. Outwardly I may just seem like I'm tired, fat, or really lazy. IDK! but, not that I do want sympathy from people, but when I say I'm not doing well that day or can't do something because my RA is flaring up, it seems like people think I'm just making excuses. Or maybe it's just my perceptions.

What I'm interested in hearing about is what kind of medicine you are on, both for the RA treatment and for pain. Is anyone else taking methadone for pain management? I am on hydroxychloriquine, which I believe is Plaquenil. Someone else here suggested that it isn't a medication that suppresses the immune system. I'm told that it is, and have been sick so often since being on it, including MRSA twice, that I believe my immune system is indeed being compromised! I'm also taking 10 mg of methadone three times a day for the pain. Though after 5 years on it, it seems like I have a tolerance built up and it doesn't really help that much. I'm afraid to ask for a higher dose because I know it's addictive, plus my doc might think I'm just trying to get high!

I'm a single mom to 6 and 7 year old daughters. When I first got the diagnosis, it was really hard because my girls were just toddlers. I must say things are easier in that I don't have to chase little ones around like I used to!

Sorry that this is a rambling post....I just wanted to introduce myself and let you know my situation. If anyone has any comments, answers, questions to any of the topics I speak of here, Please, post to my message. Thanks

Jenny
Posted 6/17/2010 9:07 PM (GMT 0)
Hi

I have psoriatic arthritis, which is very similiar to RA.   I've never heard of the medication you're taking but will share with  you what's helped me.

When I first saw the rheumatologist he put me on methotrexate and diclofenac.    Didn't help the pain much, and I had to stop taking it because my liver count went up.   After that they tried Celebrex and I had an allergic reaction.   The only thing that get me functioning at all during all this time was 2 over the counter Alleve a day.    TNF drugs were quite new at the time and I opted not to try them.   I went on for several years with just the alleve, suffering terrible pain at times and some deformity in my hands that won't go away.   Finally, after my Mom passed away 3 years ago I decided that my quality of life was so bad I would try the TNF drugs regardless of the possible side effects.   They started me on Enbrel injections and after a few shots, I had a really bad reaction at the injection site.   They switched me to Humira and it has been a miracle for me.    I can walk normally again and most days forget I even have arthritis.    Quite a change from having to use a cane and not being able to bend my knees some days.   I can't remember when I had a really bad flare up.   I give myself an injection every week.

It's easy, relatively painless and so far, I haven't had any adverse reactions.   Just have to be careful to go to the doctor and stop the shots if I get a fever or any sign of infection because it does lower the immune system.

Do you have a good rheumatologist?   You might want to discuss the TNF drugs.

Good luck and don't give up.   They're coming up with new medications all the time.

Alicat :-)

Posted 6/19/2010 6:56 AM (GMT 0)
Hi Jenny

I have had RA for 4 years now and for all of that time I have been on methotrexate, folic acid, prednisone, celebrex and painkillers when needed. Lately I have been feeling so tired and can hardly keep my eyes open through the day and then at night when I go to bed I can't sleep even though I am so tired but I do eventually fall asleep but not for a long time.

My shoulders, arms, hands and sometimes my ankles are the painful areas but especially my arms and hands. They seem to be constantly painful these days. Some days I feel like I am 86 instead of 56.

I am sorry you are in so much pain but hopefully if get a good rheumy your situation might become better.


Glad to hear you are posting and I hope you will continue.
Posted 6/22/2010 3:47 AM (GMT 0)
Hi Jenny....I have had Arthritis since I was 2 and am now 37.  I also have a 7 year old daughter so I understand your frustration.  I have been on so many drugs cant count, but lately im on methotrexate, prednisone and remicade.  Remicade is and IV treatment I get at my docs.  Cant tell ya yet if its working because this is only my 4th treatment.  As for the prednisone, I have been on and off this drug for MANY years.  When I'm flaring really bad, it does help in large doses. I hated being on it because its a steroid, but it does work when I need it to.  Before the Remicade, I was on Enbrel for a little while and that worked for about a year.  There are so many different medicines out there to try...just a matter of finding one that works for you.  I have never been on pain meds until recently.  The prednisone with other meds had kept me controlled enough to "function".  If you think you are immune to your pain meds after being on them so long, tell the doctor that.  There are many different pain drugs they can give you....your doc needs to work with you on it....but tell them what you think.  Keep the faith and have hope.  Your in my prayers.  Jenn
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