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April 12, 2009

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Becky

I understand completely where you are coming from. We hope to reduce the meds but then if/when we do it is a scary thing. I was off Remicade for a while to have for back up but am back on it again. The RA is there and rears it's ugly head, usually at the most inopportune times. We think we are better and then sneekily the RA causes swelling or stiffness to say nothing of the fatique. I have decided now to just go with the flow, do what I can and try to feel the best I can so I can do the things I want to do.

Amanda

I was on Humira once every two weeks and because of a little too much puffiness, she moved it to every week. And they're still just as puffy. I'm a LOT better than I was originally but it's frustrating because sometimes I wonder if I'll ever get to back off!

sara

Becky, you have the right attitude, that's for sure!

Amanda-hopefully that day will come soon for us both!

Pee Wee

I spent 5 terrific years in remission - felt great!!! Decided to be the new, natural me and now that my life's stressed were behind me, it was time to back off some of the meds. Big mistake, big big big mistake. Going cold turkey off metho (12.5mg per week) was a big mistake, but I didn't realize it for about 5 months, and then I went into a full flare, the remicade became less effective, and I had a big ski accident. At any rate, 2.5 years later, I'm on enbrel and 17.5 mg of metho - I feel better, weaned off the 5mg of pred per day that I was taking, and am losing the weight that goes with it. I now know not to mess with success. When I finally get the right balance again, I shall embrace it and continue the other "natural" things like the yoga, exercise, etc along with the modern medicines.

Sara

Pee Wee- a wise warning. I'm glad that you are feeling better and are on the mend (and off the pred)!

Betty

I'm so glad to see this blog...I've been suffering from RA for about 5 years (even though I didn't know it). I went into remission while I was pregnant. Felt soooo good. Then the baby arrived and....poof!....it came right back! I was on Humira for a while but developed an immunity to it. Now am on Enbrel once a week. Been good so far.....and hopefully for good! But I'm always a little depressed when I feel a twinge here or a pain there....it makes me feel a whole lot older than my 40 years of age. Glad to see there are others like me!

Sara

HI Betty-so glad you found me, too!

RA Girl

I can relate to your article very well. I am now on weekly Embrel and Methotrexate injections in the same situation as you two years later. I have had a few of these discussions with my doctor where I was unsure as to whether I was keen to reduce the number of shots or the dosage per shot.

I have reached a level in managing my disease that is fairly reasonable. Change to me immediately meant risk.

Ultimately a 5 day flare up made the decision for me making it quite clear that although I am doing well and feeling pretty good, my body just hasn't moved to a new level where less of the drugs work just as well.

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