RD Appt Tomarrow | Arthritis Information
Welp, tomorrow is the day I find out if I am off Remicade for good and moving on to Orencia.
If I am took off Remicade for good I will have to wait 8 weeks before I can start Orencia. During that time RD is going to try and wean me down to 1.5mg of prednisone.
I am really really hoping I can stay on the Remicade. It worked good for me. She checked my joints and I had 4 less swelled areas, in my hands mostly then the months before when she checked for swelling. So Remicade was working.
I am going to wear shorts to my appt tomorrow, instead of pants. So she can see how my knees are swelled. But then there is always the fear she will spring aspirating my knees on me. I will do it, but I WILL cry like a BIG FAT BABY and if I could run, I probably would, but I can barely walk so no running away from it.
I am just scared and do not know what to do anymore. It seems when I go along with everything to help my health get better, something pops up and throws it for a loop. Then if I fight against what I think should not been done it makes things worse. There is no harmony to getting better.
I have been trying to get better for 3 years now and all I am getting is worse and more damage and more health problems. Why can't I just go back to being 25 and my JRA very very mild? That is all I want. To be like I was before I had my son. I am not even asking to not have this disease and be "normal", I just want to be able to do things by myself and make everyone else happy.
Well if it'll help things, I'll cast my vote for Remicade. I just don't know if your Rd will be interested in my vote. If she is though, you can tell her I also vote no on the knee aspiration. And since I'm doing all this voting, I will cast one more for you being like you were when you were 25.
I truely hope you can see some real improvement soon Joonie, without having to wait 8 more weeks for Orencia. If it goes that way, I'm glad it's their for you to try though.
Well that is 2 votes... I think that out numbers my RD's vote LOL!!! Oh wait... we still have 3 others dr's votes... so... we are out voted still *imagines snapping fingers*
Well... ya know I will let ya know how it goes, Link-a-doodle! Ok. What time is the appointment?Wow Joonie- you were considered very very mild three years ago? Was it that way throughout your life or did you have periods like you are going through now?
joonie...its alreafy been 8 weeks since your last infusion hasn't it..if so then you won't have to wait another 8 weeks you should be able to start the orencia immediatly
get the knee aspirated and shot up with cortisone..you'll feel better. and while you are at it get xrays of both the knee and the hip
Joonie, I sure hope they will do whatever is needed to make you feel good! I'm so sorry you have to go through all this. I agree, Sweetie, you have my vote for being 25 and feeling, at least, "pretty good".
You have just been through too much, to be so young. Especially having young kids to try to care for.
Please let us know how it goes. I'll be thinking of you!
Hugs, Nini
Hope your doctor can give you some answers tomorrow. Let us know what happens. I know you want to stay on the Remicade so I hope that is what ends up happening.
Thansk for thr replies and "votes" everyone!
Link-a-doodle - My appt is at 10:45am. I should be back home around 4pm. Yes, my RD appts take 6 hours. It is a round trip of 2 hours and then the waiting and all the appt crap.
Buckeye - You do make a very good point there. I am just going on what my RD told me last visit. Which was I would have to wait 8 weeks before I could start Orencia. When I first went to her she was very persistant in asking me when the last time I had Humira and I told her it had been 2 months. It made me feel like she believed me, but wanted to make extra sure and then when I went back to her for second visit she was glad she had another visit with me before starting me on Remicade. I do not know why.
I already had a nuclear bone scan of my hips in Dec '07 & also had x-rays too. The x-rays showed much of nothing. Nuclear bone scan showed moderate uptake.
WannabeRAfree - Yes, my RA was considered mild in my early 20's because I was just coming out of remission. I was in remission from age 12-17 and then that is when I was put on anti-inflammatories. Then I was preggo with my daughter at 18 and was in preggo remission. Had my daughter and then I was doing horribly and visited an RD for the first time since I was DXed as a baby. I was 20 and the first thing I was put on was Plaqunile, then sulfazine, and before the end of that year I was headed to injectable MTX. At that point I went to another RD and she started me on Arava & pred and within 6 months she was talking of putting me on biologicals. I stopped go to her after a year and Just hung with anti-inflammatories and dealing with the problems.
So... to me compared to what I have gone thru within the last 3 years, my RA was very very mild as compared to now. Now it is just very very active and unrelenting. I would probably be considered moderate. I would not say mine is severe.
I'll let ya'll know how it goes.
I really do wanna get off the prednisone or at least down pass 5mg, I am on 10mg now. *boo*
Joonie
I most certainly say you are SEVERE!
What puzzles me is my doctor dxing ME as Severe. I'm sure by my posts you can tell I am one of the more fortunate people with the way I feel physically.
I asked him point blank last visit if I was mild, moderate or severe and he said Severe.
I said well I think I'm mild. He said I'm fooled by prednisone and he is basing it on my onset. Well- we will just see.
Best of luck to you today!!!!! Let us know how you make out!
Yep, pred does tend to mask symptoms and make you do better, but once they take away the prednisone you will see just how bad off you are.
I am sorry to hear you are considered severe. I still would not consider mine severe, just moderate. My problems are probably compounded with the Fibro. Which I am still not use to this fibro crap.
Hope you are having a good day.
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