I had 2 Rituxan infusions in November, and when my ankle swelling went down right away I thought it was going to work. Unfortunately that's the last thing that happened from it, and my ankles swelled back up again. After months of waiting, my rheumy started my on Orencia about 5 or 6 weeks ago. This is a monthly infusion and is much shorter (30-60 minutes rather than 3-6 hours). I even get them done at home by a visiting nurse! Again the ankle swelling went down some, but hopefully this time there will be some real improvement.
I know about the complications you mentioned....there is a certain type of brain infection that can happen very suddenly and unfortunately it is untreatable and fatal. However, it is an extremely rare complication, and I think so far it has only happened in a couple of patients being treated for cancer, not RA. But you know they have to disclose everything. It is very scary, but so it living day after day with this pain and not being able to function.
Only you and your doctor can decide if this is right for you. I really hope you find something that helps! Hi Roxie, nice to see you again but sorry to hear that you are not doing so well. Call the dr and ask what the name of the drug is and see if they have any brochures or pamphlets to read. My always give me something to read when he wants to put me new.
Take care
I really appreciate all the well wishes and information. I think it is Rituxan. It was the only one that you got two infusions and then maybe not more for up to a year. Rd also said that it takes a few months to work but he thought it was my best chance.
I was fired from my tutoring job and if I ever can get better, which I am hoping summer weather will make that happen, I am going to advertise to teach in my home. I live for Kelsey. I keep my home barely as I am hoping when this housing crisis is over, it will have equity and that is set up in my will to go into a trust fund for Kelsey.
Cat and InnerGlow. It is good to hear you had it and survived. Somehow my rd thought it was the most dangerous but the most potent. Was that your impression??? I wish you had better news as to the results, I am very scared to get it but as my Rd and I agreed, I have no quality of life right now. Lynn, I would love to hear lots more about your good results. I need to build my bravery. My daughter needs me. My Rd told me about all the IV drugs hence, confusion on name of drug. My Rd refused to try me on Enbrel again which is what I was hoping for. As some of you know, Enbrel was very effective for me at one time, I was hoping to try it again.
I have made a friend who is disabled. He has MS and also does water therapy. We exchanged phone numbers and I hope to get to know him and his wife. It felt so good to talk to someone who understood what it is like to be trapped in your own body.
I have two wonderful aides who really care about me and Kelsey. I do not know what I would do without them. I rarely see my family. I think the progression of my disease makes them uncomfortable. It hurts but I understand.
I was surprised by all of the kind messages. It meant a lot to me.
I think my life will improve when I get on Medicare in Oct. I will get my electric wheelchair and will get out of the house more.
Kind wishes and back at you for the caring encouragement. Roxanne
roxy2008-05-17 19:24:07Roxy, I am glad to hear that there are some positive things going on too! And yes, getting out of the house more would be a good thing.
Like you said, I got the impression that Rituxan was considered to be the more powerful drug. Honestly, I prefer getting infusions to the Enbrel sure-click...I couldn't believe how easy the infusions were. I was fortunate that I didn't have any allergic reactions to the Rituxan (which is what I was really worried about), but they treat you with pre-meds to avoid problems. The Rituxan is designed to eliminate certain B cells in your body and my lab work confirmed that it did (my level was "0"), but somehow it didn't have the desired result. The Orencia I'm on now is supposed to work earlier in the RA process on the T cells. Despite all my knowledge and research, I'm still not a scientist or doctor, so I can't tell you what other processes these two types of cells are involved in, and maybe that is why Rituxan is considered the more potent/dangerous med.
Also, I don't know if your doc mentioned but they are anticipating a new infusion med, Actemra, to be available in September. I'm not sure I want to be on a drug as soon as it's been approved by the FDA (since we see so many post-approval problems these days), but sometimes it is worth the risk.
[QUOTE=apeanut]
Roxy, I thought I heard it was something like Toxin Probably have the name missed spelled [/QUOTE]
Nut, ROFLMAO! A drug named 'Toxin' LOL. Is that a clue to what your subconscious says?
Roxy, best wishes on your decision. Everyone knows it isn't easy.
Roxy,
I'd be happy to share all my results with you concerning Rituxan. It will have to wait until later today or tomorrow though. I have a bit of a family emergency going on at the moment.
I will tell you that I will have had severe, refractory RA 9 years in June and this is the only med that has worked for me. I hope you have the same kind of results....
Take care,
Lynn
Lynn492008-05-18 07:37:51[QUOTE=Suzanne] [QUOTE=apeanut]
Roxy, I thought I heard it was something like Toxin Probably have the name missed spelled [/QUOTE]
I laughed when I read that because I knew that wasn't what you meant, but it sure is something we can all relate to. I'll bet no one was surprised at all that you made that typo. We soooo get it.
Roxy, I've never heard you like this before. I'm really sorry for what you're going through. I'm glad others here were able to give you the information you need, and I'm glad you decided to ask for support. Regardless of the differences that come up from time to time, we all have to band together in tough times. You'll always have friends here.
Thank you again.Roxy,
I've been on Rituxan for almost a year. I had my first two infusions in June of 2007. It took a very long 6 months for me to feel anything, in fact...I thought it wasn't working for me at all!
I woke up the beginning of December and I just felt...good, really good. My family noticed and commented on the fact that I seemed to be full on energy and in a lot less pain.
Other than the nausea that I had for two weeks after my last infusion, I haven't had any other side effects. I've been able to drop both the MTX and the prednisone. I still use pain meds occasionally, because I have a lot of damage to certain joints. I'm looking into having surgery on some of the more troublesome ones..
My RD is monitoring me closely so if I start to backslide, I can schedule the next set of infusions. I'm thinking about doing them in August, but I still am feeling very good...so I may try and wait a long as I can.
If you have any questions, feel free to pm me,
Lynn
Hey guy's.. thanks for cuttting (mis- spelled)me a break on the type O . I feel at times my body is a wonder land Of "toxin's". There is probably not much I haven't tried after having FM for 18 yrs now RA, Hypo-thyroid ,high blood pressure, Hyper glicimic(SP),Mytral valve prolapse, ....... And I could go on. One thing I do try to keep is my sense of humor ( even though at times it maybe a little sick) but oh ! I feel I am (hopefully) among friends. Saying that my brain has fog the size of the Atlantic Ocean which doesn't help LOL..... And Nut is done and leaving the building (for now)
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