I am having a bad time | Arthritis Information

Share
 

I have been trying to decide whether or not to have a rituximab infusion. Only because I have had so many allergic reations to other meds. I really am a bit worried about the infusion but after having a nightmare of agonizing pain in every joint for a while i have decided to go for it and have the infusion. My rheumy pointed out that I have no quality of life with regards to my RA at the moment and I cant carry on living like it. I had a fall last night ( I actually fell off a chair) and whacked my head rather hard, I felt so upset with myself and spent an hour crying like a baby, not because my head hurt but in frustration with the way my body keeps behaving. I felt I had had enough. I woke up this morning and decided that its the infusion or carry on getting worse. So i go next friday.......until then i just musnt change my mindHi Lisa, I'm so sorry you're having a hard time right now.  I'm afraid I don't have any advice because I'm new to all this, but I just wanted to say "hang in there" and I will send you some transatlantic good vibrations for a spectacular result when you get the infusion. 

Hugs,
Andrea 
HI Lisa, I know how you feel, ditto to your problems, I have tried everything even Orencia and still had an allergic reaction.  My RD wanted to use Rituxan next but is worried about having an allergy with an infusion straight into the vein.  So I am stuck at present on 10mg of MTX and prednisone, he wants me off of the pred or at least down to 5mg, but it doesn't look like happening, I am at 8mg now but feel the need to put it back up to 10mg for a while.  Also the MTX is causing ALT tests to elevate and he may stop the MTX so I will be back to square 1, at least with the MTX, I have ha0 a little relief.

I truly hope Lisa that you find something because the stress of just making do isn't good enough, best of luck, Janie.
Pin Cushion
I feel so bad when I read that there are people who just cannot get relief from this %@**# RA. At my onset I did not respond to the meds and kept getting worse and worse and I was scared as hell. Thank God it turned around for me.  I'm going to pray that you get good result with no allergic reaction.
 
I also hear you about the frustrations of your body behaving! Go ahead and let it all out with a good cry and a pity party today. Everyone needs one from time to time. Friday pick yourself up, shake it off and have a successful infusion!
Sorry you're having a difficult time right now, Lisa.  Hope all goes well for you on next Friday.hi pin cushion ... i can really relate to this after being allergic to so many meds
it gets a little scarey.. but i think stay positive as the next med may be the
wonder drug...  just wonderd if you have reactions to other things..
i am allergic to all but 1 brand of deodorant spray and after shaves..allso have reactions
to chicken ....   Boney
Lisa.  I think you're making a good decision.  Your doc is aware of your allergy problems so if you do have a reaction they'll be prepared for it.  But this could be the one that will "bring you back from the edge" and I totally think that that is worth a shot.  And you'll never know if you don't try.  Don't change your mind.  You made this choice for a reason, don't lose sight of that.  Lisa, so sorry you have been feeling so badly.  With the mtx liver results, have you tried milk thistle to bring the liver results down?  It's worth a try before giving up on mtx.  Also, SAM-e helps the liver, but there was one study that seemed to imply it could interfere with mtx...but if it's this or no mtx at all, you might want to give it a try.
 
I think you're making a good decision on the Rituxan.  I know how scary allergic reactions are, but think about how scary life is getting.  And like Linncn said, they know about your problems so they will be prepared.  I really hope this works for you and that your infusions go as smoothly as mine did, but with better results!
I'm really sorry about your troubles.  I hope the Rituxan works for you.  Isn't there anything they can do to help minimize your allergic reactions?  I'm sorry if that's a stupid question.  I'm sorry to hear you are struggling. I hope the time passes very quickly until you find relief.
 
Keep your chin up.
Lisa, I'm so sorry you aren't doing well lately.  You are one of the strongest, most positive women on this board.  You are such an inspiration for everyone, and always there to support everyone through their hard times. 
 
Sending up a load of prayers and good wishes that you will be feeling better very soon. 
Lisa, I agree with the other comments, don't scare yourself into not trying the infusion, since your RD already knows how sensitive you are they'll be extra wary. The infusions are a total PITA, I hate driving the 40 miles, hoping that the nurse who always gets the right vein is there, then just sit for 3 hours watching tv, but it's worth the relief it's given me for the past 2 years. I'm hoping, hoping, hoping this works for you. Thank you all for your replies, you make me feel so much better about things.Awww... Pinnie! Sorry to hear about your fall. I hope your head is ok.
 
Well, we must do what we must do, and get rutiximab infusion is some thing you must do. And this is coming from someone who is afraid of needles, too! I done it to have a better quality of life. I know you can too.
 
Oh I just googled you new infusion and the very first result had this as their first line of the summary.
 
Rutiximab acts like a silver bullet that selectively kills B cells.
 
I hope you will not change your mind. I have never changed my mind on starting biologicals, and believe me if I had the strength not to change my mind about getting them, so can you, you are much stronger than I. Because you ain't a needle fearing pansy like me! .................I dont mind the needles, hence the name pin cushion , I am just sick of the RA meds making me worse than the RA itself.... I think as well this will be the last thing that they can try on me and if it doesnt work i will have to wait for them to invent another med to try. Lisa, I really think you should go for the Rituxan and have faith it will be okay. You may just NOT react badly and it may work. I think sometimes we get into a frame of mind where the negative stuff about this disease consumes us and we can't see the hope.

I would be looking at it this way...you have been through so much, what's a bit more. And it might work.

I really had few side effects and I had had lot's with Humira and had become immune to the rest of the biologics.

Don't expect instant results, don't even expect the first round with be your 'miracle fix', you may have to do several, like me, before you get full effect.

Lisa, I am happy to talk to you anytime throughout this process.

I had my first infusion, second round on Monday.

The other thing I think you need to do is get yourself on some probiotics...at the moment, you are getting thrown around by your RA, Lisa and I have been there. When I went onto probiotics 2 months ago, that stopped. My RA settled down and that rollercoaster of severe RA battering me around all the time, stopped. I began to have more good days than bad and no nightmare days. Go to your health food store, pharmacy and get as many 'live cultures' as you can in a tablet, start on one tablet a day. I think probiotics will stop you being battered around here and that is what's happening.

PM me if you need me, Lisa. You are going to make it through this, woman, you just have to believe that.




Cordelia2008-04-03 13:53:05

Sorry you are feeling crummy Pin. Give the Rituxan a fair chance. Positive thoughts from you and to you from all of us. When you start falling off chairs and banging your head, it is really a wakeup call to try something new.

"Rituxan is unique (so far) and you are going to tolerate it just fine and it is going to help a lot." My positive thoughts for you.Hi Lisa, my positive thoughts, energy, karma, and prayers are all with you. Give it a try.....you never know until you try. Everyone here is cheering you on!

YOU GO GIRL!

Good Luck Pin. I'm glad to hear that you're giving  Rituxan a shot. I hope it will make a huge difference in how you're feeling.
Copyright ArthritisInsight.com