Hi,
I'm new to this forum but need some advice. I have had RA for 1 1/2 years. My onset was abrupt and the flare has yet to get under control. I recently saw my Rheumatologist and she is concerned that we are 'running out of options'. I am currently on Prednisone, Enbrel and oral Methotrexate, but have had persistent pain and swelling. I've treid Humira also, but it did not work as well as the Enbrel. The doctor is concerned that I may have a 'more debilitating type of RA' since there was a certain blood test that came back positive (sorry the name escapes me right now). Anyway, the doctor wanted me to read up on Remicade, Orencia, and Rituxan. She wants me to consider changing to one of them and / or switching from oral MTX to injectable. She also said that if I go off the Enbrel and have to resume it, it may not work as well for me.
Anyone have any words of wisdom? The decisions kind of paralyze me with fear. I have to take care of myself.....my husband left me a year ago...and I have two daughters ....one is a senior in HS and the other a sophomore in college. I work fulltime as a RN.
Have already had to have arthroscopic surgery / synovectomy on my one knee this past April. The other knee isn't going to be far behind as it's getting worse. This stupid disease seems to be attacking me with a vengence....and I must say I am scared of the unknown. But anyway, I have to make a decision about changing meds by the next time I see her on November 13th. The Orencia and Rituxan are so new that my doctor actually only has one patient on each. HELP!
Any input anyone can give me would be greatly appreciated.
Thanks, Pam
About the efect of RA on a marriage, it is difficult. I'm still married after 35 years, but it has taken its toll. RA takes so much of your energy away. You really have to rethink the whole process to malke it work. Good luck. My first impression was, "wow, this lady is taking care of everyone but herself..." Beloved friend, YES, you really DO need to take care of yourself. But I also include in that treating yourself gently, in other ways besides medically. You are in a giving profession as a nurse, which is also high stress. You are in a stressful time of life, with an ended relationship. Also, you have two children going off in their own directions, too. Lots of stress all around. Your body is in pain, but other pains need to be nurtured, too. Anyway, I would consider Remicade, only because I've had great success with it as one with that "debilitating type" of RA. Also consider a spa treatment or therapeutic massage, just to spoil yourself. You deserve it! Sending you my love and prayers...
I've had severe juvenile rheumatoid arthritis since infancy - and I've always tested RF neg. I'd try Remicade infusion first, simply because it's been out longer, it has a track record. Then the brand new Orencia, another infusion style TNF inhibitor. Then the Rituxan, a borrowed cancer drug like MTX, shows promise but is relatively new to autoimmune disease treatment. Remicade, Orencia and Rituxan all have .coms. (drugname.com) Change is scary for all of us. I havent found the right combination either I see the rheuma tomorrow I am discouraged and depressed and dont know what to even say to him. Take Care you are in my prayers There's another biologic. Kineret. I've taken it for two years, and it works well for me. It's been out for 5 years. TNF blockers (Enbrel, Humira, Remicade) have been proven to affect the central nervous system negatively. Orencia, Rituxan and Kineret do not. All things to consider. All of these meds work well for some, and not so well for others. It's difficult to arrive at the perfect cocktail for each individual. I have to wonder what your rheumy is thinking. "Running out of options" my patooty. There are lots of options out there. Finding the patience to try different cocktails is the problem. I have to ask why the doctor is giving up already. Not a very positive attitude, if you ask me--and negativity is not what you need right now! Take care, and let us know your thoughts... Fear and uncertainty will not solve the problem. It is worthwhile to find a solution in natural foods like I did. You might try the remicade. The risks are about the same as enbrel and humira. The enbrel didn't work very well for me, so I switched to remicade.It's been about 5 years now on the remicade - it's started to lose it's bang for me but the 1st 2.5 to 3 years were really good. There is less of the the roller coaster effect - tends to provide a steadier kind of relief. You didn't really describe your nursing job but perhaps you need to swith to position where you are not on your feet as much. Also if you can get rid of some of the heavy stress you are under, you may find yourself feeling much better. In my case an anti-depressent like effexor has done as much for pain control as any of the arthrititis drugs. I tend to flare when under stress. My suggestion would be antibiotic therapy. www.roadback.org Research it. Find a RA that will get you started on it. Best of luck to you! What about adding Arava, Plaquenil, Sulfasalizine, Gold? I wouldn't worry too much about adding a different biologic - why not try it? What if it's your right combination?? Like the others - you aren't out of options - I don't know why she said that! And there's new drugs in the works. Best of luck to you....but don't get down and upset, that'll make things worse. Just set your mind to try and keep trying till you find the right one!
My heart goes out to you.
All you can do is try different combinations and/or new drugs which it sounds like your rheumy is doing. Everyone is different and I hate to see someone going through what you are. But hang on, be vigilant. If you feel your rheumy is not being as aggressive as you'd like, seek out a new one.
It sounds like the Enbrel is no longer working. I'm with you when it comes out to trying brand new meds-not too excited about it. I was surprised to learn that only 300,000 people were on Enbrel!
Perhaps it's time to try Remicade.
Let us know what you decide and if it works.
Best of luck!
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