Saw the Dr. today. You may recall that about 2 months ago I convinced
the RD to stop the Remicade as I was worried about the infections I was
getting. The most worrisome being Cellulitis around the eye. He agreed
and today was to see how I was doing.
He was not very pleased. It seems that I have many more joints
inflammed. I have also had the upped back and neck issues and they have
worsened. My back will actually get bright red-kinda like a sunburn. He is
doing a ton of blood work again to see how it compares to the labs a few
months ago. He wants me back on a biologic. He said that he totally
understands why I wanted off. I guess I didn't realize how much the
Remicade was helping. I have been on it for over two years.
He printed out a faq sheet on Orencia. He is going to call me in the next
few days to discuss blood work and what I want to do. I have already
done Humira and Enbrel. I am concerned about moving up to yet another
as I am pretty young and don't want to run out of options. How pleased
are you Orencia users?
He gave me a long visit. About 25 min. I was surprised. They was a fire
drill right before hand and that put them way behind. Plus he was getting
his picture taken for some award and the photographer was waiting. I was
figuring it would be a quick one today.
Becky
Sorry you are doing worse - big hugs to you! I'm not very familiar with orencia, but I hope it does it's job for you. Have you done the plaquenil or Imuran route with Mtx already? Good luck sweetie, hang in there...
Deb
Becky I am so sorry. I cannot help with Orencia...I am glad I can't cause that would mean that I am already through Remicade.
I hope you get some relief soon. I am glad the RD took blood samples. Sometimes we need to see how bad we can get, and sometimes we forget how bad we were. I know waiting a month for Remicade in between Humira sure showed me how bad off I was.
Get some rest and take your pain meds.
Hugs, Jen Well, like everyone else, I have no experience with orencia. It's pretty new, isn't it? I did get an Orencia alarm clock in the mail. That was kinda weird. Anyway, I just wanted to say I'm sorry about these new developments. I hope you don't put off taking another biologic, it may work for years to come. On the other hand, if you don't take it, who knows the damgae your joints will endure. I guess a lot to think about. Let us know what you decide. Linda Hi Becky - I'm on Orencia, in conjunction with AP. I had the two loading doses last month, and will go for my first monthly infusion on Monday. So far, I've not noticed anything spectacular. I had blood work done last week, and the values remained the same as they were prior to starting Orencia. My RD said many people don't notice a difference until dose 3 or 4, so I remain hopeful. I did get nauseated with both infusions, with the nausea lasting about 4 hours. Other than that, no other noticable side effects. Good luck should you decide to choose that route. :) Well, like everyone else, I have no experience with orencia. It's pretty new, isn't it? I did get an Orencia alarm clock in the mail. That was kinda weird. Anyway, I just wanted to say I'm sorry about these new developments. I hope you don't put off taking another biologic, it may work for years to come. On the other hand, if you don't take it, who knows the damgae your joints will endure. I guess a lot to think about. Let us know what you decide. Linda I am on orencia although I have only had three doses so far. My next one is about a month a way. THey say it takes about 5 doses or three months before you see anything. After the first dose, I had a tiny bit of improvement. But, I have gone down hill from there. I have been in a bad flare for the last year and this is the five medicine we have tried. So, I am hopeful it will work. It is a little worrisome to get to some of the big guns so early in life (I turn 36 next month). But, I am also coming to the realization that it is time for me to stop working full time. I am tired of just putting all my energy into just surviving and not having the energy to do fun things with my 6 year old twins. Good luck. Hi Becky - Hope you feel better! Hugs. NCJen - Hi, I think you're new! Twins, wow! Pip I am also concerned about working full time. I am not sure what else I could do. I currently teach middle school science and love every second of it. However, I can slowly feel myself becoming the type of teacher I never wanted to be. I don't want to give notes all the time so I can sit. I am a believer of hands on activites and discussions. I have planned an awesome trip for my kids. We are going to a local state park/lake. They will get to collect samples of water and organisms to look under the microscope, hike and do an orienteering course (compasses), and canoe. It is going to be great but I am stressed about keeping this trip as a tradition. This is my trip-I can't stay back. AARRGGHHH. I am hoping the dr. calls in the next few days with the lab work. If is shows a large increase in the sed rate or Anti-ccp I will probably switch. I understand about not wanting to quit. I love my job also. I really like the point that I am at in my career. I have also defined part of my personality with what I do because I love it. Going out part time or full time is going to be hard. But, I feel like I am not getting much enjoyment out of life anymore. I am like a drone who just keeps pushing forward. I want more for myself and my family. Pip, I have been around for a while but only post occasionally.
An Orencia alarm clock? OMG that's funny. I have a big blue foam Viagra tablet, several mugs from Abbott, TAP and other big pharma's, and assorted pens and trinkets. One of the oddest is a squishy brain - I think it's from Merck, but I can't remember right now. The most useful item is a 4-port USB hub from TAP.
I really want one of those plastic hand or foot display skeletons that the pharma's give to rheumatologists and orthopedic surgeons.
I don't know much about Orencia, other than it blocks the T-cells from activating. Other biologics go after some of the inflammation chemicals that the T-cells pump out after they've already been activated. Sounds like a great theory - block the T-cells from partying in the first place, rather than waiting until the party has started and then try to stop the damage. Please let us know how it works for you!
Jas, If I get a foot, I'll trade it for your mushy brain
[QUOTE=Linncn]Jas, If I get a foot, I'll trade it for your mushy brain
Yeah, Jas, that story "cracked" me up. Get it??ume that would only have made matters worse
How about those young boys with their pants fastened half way or more down their butts? Bet a quick prostate exam would teach them where to fasten their belts. I don't care what anyone says about acid jeans and big hair, those weren't nearly as ridiculous as saggy pants.Hmmmm...maybe if I got an alarm clock it would make my decision
easier..... That's the master plan! Will it help if I tell you that although it isn't a very attractive alarm clock, it does work and it'll tell you the date?
[QUOTE=Linncn]
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