Advice on biologics | Arthritis Information

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I know several people on here do not like me.  Please do not reply.   I need advice.  I barely can walk.  Once a week I go to the pool, They have to put me in a chair swing to get in.  That is my only joy in life anymore.

 
My rd wants me to go on one of the IV biologics.  I cannot remember the name as he mentioned several.  The one he recommends is you take it twice and if it works, you may be able to go up to a year without another one.  He said there have been deaths while administering this drug so that scares me.  My daughter needs me.
 
Does anyone know the drug I am talking about or have any experience with it?  Sorry, I was so upset at the rd that I am confused which drug it is. 
Was it ornecia?  I use remicade infusions. I think all the biological infusions have a chance of serious allergic reaction which is what usually causes the death part but they monitor you closely while you are being infused for any signs. Roxy, I thought I heard it was something like Toxin Probably have the name missed spelled I do that a lot.  From what I have heard most people are happy with it.  I don't think they give it until it's your last resort.  I hope you find out what you need and get better........ Nutthe drug you are talking about is rituxan.  part of the protocal includes iv prednisone as well as benedryl to help avoid serious allergic reactions.  The med was originally used to treat non hodgkins lymphoma.  it attacks the b-cells of the immune system.  Buckeye,  I  don't know how I got toxin in there I meant to spell Rituxan or at least come close.....I think InnerGlow took the infusion you are talking about, Roxy. Try PMing her. not sure I'm anyone "liked" either.. but hell, we're all in "this" together... I hope someone w/ experience comes forth for you roxy.
 
 
Hi Roxy, nice to see you posting although I am so sorry you seem to have gone backwards again.  I hope you can get some relief soon, you were going so well, I guess the job has gone too then, but well done for trying Roxy, never give up trying, you know you have the strength to do that for you and Kelsey.  How is she by the way?  Have you still got your carer?  I sure hope so, God Bless my friend, love Janie.  Miss you. Hi Roxy, I do not know what the drug is called, but I am glad to see you posting!  What in hell do you care whether they like you or not, you are here to get help like we all are.  Ignore em Roxy, ignore em! I don't know anything about the treatment you are seeking but I sure hope it's something that works for you. So sorry you are functioning at such a low level- it becomes very depressing. Prayers going up for you!I had 2 Rituxin infusions in November.  At first it seemed to be helping slightly, but then personal and family problems overwhelmed me, and all the stress erased any potential benefit.  Doctor wants me to do it again but I am leery.  I got an MRSA infection after tendon surgery in December and was told that RA, as well as the drugs to treat it, can cause or intensify infections.  Now I need hip replacement surgery and I am scared of the chance of infection.  It took MONTHS - and two weeks of antibiiotic IV treatment - for the MRSA to clear up.That's one of the bigget concerns with any of these meds. If you are to get something like MRSA it can be life theatening. Everything takes so much longer to heal and can be so muh more serious.
 
You've dealt with bad infections beforeRoxy. It's nice to see you....but I'm sorry to hear you're doing so poorly.
 
Try not to let it scare you so badly that you don't let yourself get excted about the possibilities this medicatin might offer you.
 
Best of luck to you. 
I use Rituxan. I had my first treatment last June. It took six months for it to work, but the results have been wonderful for me.

I have had refractory RA for just about 9 years. Rituxan is the first med to work for me. I've been albe to drop the MTX and prednisone. RD and I are discussing when to do the next infusion. I haven't had any side effects except for mild nausea after the second infusion.

LynnHey Roxy, sorry to hear you're having so much difficulty.  I do PT in the pool 2-3 times a week and I know how nice it is just to be able to move around a little.
 
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 19:24:07

Roxy, 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,

LynnLynn492008-05-18 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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