From 2005-2009 I was 100%. Meaning I could ride my bike 30 km outside, garden, cook and participate in church activities. I thought I was doing really well.

In March of 2009, I went back to my old school district and had a talk with the health rep in my union about coming back to work in September. My husband could have transferred back to the same area.

The union rep told me with my illness, things could go wrong at any time. Then I would be missing school, which is not good for the students, especially the primary ones. I wanted to be ethical, but this rep insisted I was not fit to teach with RA. I was miffed and felt she was wrong, but decided that I wasn't going to fight her recommendatioin.

So the first week of April that year, mthx failed when my liver enzymes jumped into the 300's. So I had to change to Sulfasalazine which never worked as well, and I became severely allergic to it. On April 17 of that year I had my right foot reconstructed. I was not looking for beauty, just to be able to get into a normal shoe instead of the $2300 hand made ones. The operation did not go well, and I have had constant nerve pain for 6 1/2 years now. And a pin that sticks out of the bunion, which was supposed to be removed last year, but I broke my wrist riding my bike, and I could not support myself for no touchdown for 2 weeks on crutches. Now I have to wait a full year to get an appointment to see a foot orthopedica surgeon in the province I now live in.

I began to realize the union rep was right. Since 2010, I have been searching for some kind of combo or biologic that works for me.This year, nothing has worked, and I am a bit discouraged.

So, I think your rheumatologist was being a bit optimistic, like those ads on American TV for various biologics.

I think if I could do the things you are doing, I would be happy! RA is not a simple disease, but serious and complex. I would be happy if my hands stopped hurting, and I could figure out what is terrribly wrong with my knees. I know I have a lot of OA in them, but it has never stopped me from riding my bike like the last few weeks. I was finally getting on my bike in the basement, and now I am back to square one. Time to see a physiotherapist after Christmas!

So I hope your new rheumy is a bit more realistic with you, and you don't push too hard and get sicker.

And Merry Christmas!

I have been on MTX and Enbrel for over a year now. I have come to terms, finally, with the fact that I will never be 100% again. I am usually about 75% and it sucks! I was so active and now I have to pace myself. I really miss the old me :( I will take the 75% though because it beats the other option of where I was when first diagnosed.

Best of luck to you. Merry Christmas and Happy New Year :)

I would dare to guess that all of here wished for the Pre RA days. RA is just a disease the effects every area of our lives... at any age.

I was housebound for the first year w/ RA. I couldn't drive a car.... I didn't sweep a kitchen floor, go to the grocery store, or to a movie or restaurant for over a year..... My husband had to do it all.... My career came to a complete halt.

I was 47.

Now, I can walk a mile w/ the dog, work 6 hours a week as a teacher at the community college (my teaching career was gone over night).... I can clean house in increments, do just a little traveling, and enjoy crafts like sewing.

Before RA, I could hike, snowshoe,, etc....

I do miss my life before but I did have to let it go and rethink what was really important to me. Almost all of my friends moved on with their lives in the "fast lane". I couldn't keep up and they didn't want to slow down....

I have many new friends now that I have coffee with, do book studies with, and they are MUCH more valuable bc I've changed....

I know my 100% will probably never come back... but I can now do things that I enjoy daily..... It's about the one day at a time now for me.

Life means so much more in small ways now. .... I stopped living w/ ridiculous expectations of myself....

It is a process.... it didn't happen over night... and I did have to grieve my old lifestyle.... bc it died. Now a new life has come to life.
Best of luck to you. xo

I've battled Ra since I was 25...I'm now 64. The best I ever was when I got on Orencia 7 years ago...felt 100% for the first 3 years. Then I had to stop it for surgery and was off for 6 months the first time. Had more surgery 15 months later and got sick after so I was off for 10 months. Been back on for 2 years but it has never been 100% since I got back on...more like 60% and going down. I blamed myself for having to have surgery and ruining a good thing.

Then I saw the latest TV ads for Orencia that have a written statement on the bottom saying that Orencia can give up to 3 years of full clearance of Ra. It wasn't me, this is how long the drug seems to work and then it slowly goes away.

RA will always prevail somehow. It is one nasty disease.

You might get to 100% with another biologic and certainly worth talking to your rheumy about but then again, it may fail completely and then you've lost the benefits of Enbrel by leaving it too soon. I'm asking about trying another drug too but hesitate to do so as is my doc.

Some people do well for many years before the biologics lose their effectiveness but eventually, we all develop antibodies to the biologic drugs. Your best bet is an honest talk with your rheumy but I'd say you are about average in treatment terms but Ra always wins out....thus far.

Jen

I've recently (past year) struggled with this thought of feeling 100% or "uh oh it's coming back" or "Is this a flare up"??? Yes, in my mind I do excpet to be 100% sooner or later. I've been experimenting with the MTX dosage anywhere from none to 5mg.

But what's frustrating sometimes is catching a cold or flu (like I have now) & getting a flare up. Not sure if the flu/cold causes the flare up or was the flare up going to come anyway so messing with the meds during this time is futile because you don't know if you're doing worse because of the reduction or from the flare up.

However, on a more positive note I feel for myself that MTX on it's own has been doing a great job on my RA & typically I feel I'm at least 95-98% so if that's what I have to live with then so be it, I can be content with that. Although of course the end goal is to get completely off the meds.

Thanks for all of your responses. I will have an honest talk with my rheumy, but if this is as good as it is going to get, then I better leave well enough alone! I don't ever expect to be med free, I've accepted that long ago. If my vegetarian, gluten free, kale filled diet didn't help... .

Happy Holidays!
Juls

No, I never feel 100%. I've become used to my new normal and tend to ignore it -- until I'm around friends/family who are living the life I used to have. At family functions now, I have more in common with the older generation - 20-30 years older than me - than with my own.
I'm 47, 3 kids, work full-time (usually more than). On my days off, I used to ride my bike to a trail, run the trail, ride back, do several hours of yardwork, make dinner, etc... Now, the weekends are all about resting. My husband does virtually all the housework. I'm so lucky to have him. My kids don't really get it. I look OK to them and I don't want to complain.