Hi all! Noob here. Newly dx'd, happy, but scared! | Arthritis Information

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Hi everyone!

Just thought I'd look around and say "hello." I'm 25 and I've recently (2 weeks ago) been diagnosed with RA, which is good news and bad news. The good news is is that I'm not crazy - I have been unwell for the last 18 months and have been dealing with my health spontaneously declining since then, and I have been trying to convince my GP and Rheumatologist that I actually have better things to do with my time than pretend that I'm unwell. Seems I'm one of those people that has slow-onset RA. The bad news, is of course, the fact that I have RA, but I'm glad that I'm not completely alone in the universe. I've spent the last 2 weeks obsessively researching, but I don't seem to be getting any comfort from the facts. My grandmother has seronegative RA, and is trying to comfort me about it "not being that bad," she's lived with it OK for the last 35 years, has had her RA managed by meds and has had minimal damage done by the disease. While that gives me a bit of hope, I'm still a bit scared that I will be in majority and have RA that may not be controlled.  Right now I'm having to be a bit realistic about what I can expect from myself within the next few years - the possibility of persistent fatigue, yucky meds, pain, etc etc, and I'm finding it a bit frustrating. I'm on Plaquenil at the moment and I'm hoping that it will work - the worst it can do is cause eye damage, but I have to plan for a future of harsher drugs, coz HCQ may not work. I'm also on high doses of Prednisolone which gets me out of bed (yay!), but makes me a bit wacko.

Just thought it would be the best to share!
HI Paperdoll, what a yucky thing to be facing?  However you have come to the right place.  The problem with RA is that it is so hard to diagnose, I once read that on average it takes 3 years to diagnose!!!  You know full well that your body is sick, the pain and fatigue you feel is real, I think we have all come across the odd medical person not taking us seriously.  Do not give in as we have all been in that boat and eventually we get diagnosed and sometimes it is the wrong diagnosis and it becomes quite obvious further down the track.  There are other conditions that can mimic RA so a Dr needs to be absolutely certain before they start you on the big-guy meds!  I wish you a quick diagnosis and then you may have to be patuent with the meds as that is a real hit and miss proposition with some people.  Thank God most people find relief but then there are others on this board including me that cannot tolerate the meds, or the meds don't work, or might have allergies, it really can be a long drawn out process which requires patience, persistence, and strength.  I wish you all the best and hope you get sorted soon,  Kind regards Janie. _popupControl();^ Thanks Janie. I really do hope that it is something else, something that will be self-limiting, but there are no guarantees! Augh, I think that the worst thing a Dr can do is to question a patient's state of mind when they are mentally healthy, it causes such unnecessary distress. At the moment I fit 5/7 ACR RA criteria, and my Rheumatologist is very confident it is indeed RA, but deep down I hope to prove him wrong! I don't want the big-guy meds, they sound so horrible, but if there is a chance they can help me manage the condition, then I will be happy to give each one of them a go.

Hi paperdoll.  Sorry you have to be here, but welcome.  Hi PD...welcome!Hi Paperdoll...welcomeHey Doll!

 
Yes, they sound horrible - but sometimes they're necessary.  Just learn all you can and try to let your body do its own healing.  Yes, that sounds 'sooo LA' but your body does know what it needs.  You just can't hear it yet!  LOL
 
Check out www.roadback.org for more info on using antibiotics to control these diseases.
 
Pip
P.S.  Don't leave here tho!
Hello paperdoll!!! You name wouldn't have anything to do with Kittie, would it? :-D

Anywhos, welcome welcome! And you say pred makes you wacko? Naaahhh.......

JOKE! That's pretty much what it does to 90% of us. LoL Hang in there, when they put you on the real meds hopefully you can drop the pred :)
Welcome! I hope the treatment works well for you. If not don't worry, the scary meds really aren't that scary.
 
~ Erica 24 Stills/JRA dx 6/87
Medication guinea pig extraordinaire!
 
Kineret, Indocin, Plaquenil, Mtx, Folic Acid, Ultram, Iron
 
Sorry about the diagnosis, I remember how happy I was to know I wasn't crazy. There is still no definite test for RA.

Here are some websites for you to research

http://www.hopkins-arthritis.org/
http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020
http://www.hss.edu/rheumatology.asp
http://arthritis.about.com/


It sounds like your doctor is doing the step up treatment plan instead of the step down. You might want to do some research to help in your treatment decision. Most doctors now start much more aggressive with the stronger meds and step down once its under control. Since you went a long time before diagnosis your RA might be harder to treat. You can get damage in just a couple months so do your research.

http://www.hss.edu/newsroom_11318.asp (aggressive treatment)

Robin
 
Let's hope your rheumy can quickly find something that helps you!
 
lorrie2008-11-23 23:53:17^ Thanks guys! 
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