Today my doctor told me that we would be trying a new treatment called Rituxan infusions...has anyone tried that....or even heard of this before?
hi there ms. scott! yes, i've used and still am on rituxan, and i like it. it seems to work really well on my joint and muscle pain and inflammation, and there were almost non of the ickey side effects like the nausea and vomitting from the cytoxan. my rheumie decided to put my backk on the cytoxan along with rituxan because, although rituxan works well, it didn't seem to take care of the more serious stuff with my heart and lungs.
there's a particular way they have to give rituxan when you are getting it for the first time. first, they do your bloodwork to make sure all is ok, then they give you something to make you sleep, usually benedryl and tylenol, then they hook you up to the blood pressure machine and they come to check you every 10-15 minutes for about the first 2 or 3 hours. this is to make sure you're not having an allergic reaction, or any kind of reaction for that matter. it's possible for you to have some kind of one, but usually very minor, they'll advise you, and please know that ITS NOTHING TO BE AFRAID OF!!. they also "push" it fast, which means that they run it pretty fast thru the IV machine, so you'll be up and down to the bathroom, which sucks, because they've got you drugged up and sleepy! the whole thing should take about 4 hours, depending on how long your labwork takes.
if i may ask, what are your symptoms for your doc to have you take it? how long have you had lupus? how are you dealing with it?
be well, and please let me know how it goes for you
I was just diagnosed back in Sept. of last year but I have had the symtoms for over a year now. I have been on 4 different NSAIDS and they did not work, and now I am on 20mgs of Pednisone a day and 15mg of Methotrexate a week and have been for about 3 months now and I am not showing any real improvement so my doc thought that Rituxan along with the methotrexate would get me better results. It seems like if I don't take my pain meds on a daily then I am in constant pain and this drives me crazy, my doc also said that my test results do not show that the methotrexate is working the way it is suppose to so together with the Rituxan she is hoping that it will bring me some relief. Since I am still new to this I didn't really know if this would be the right road to take or if she ws jumping the gun a little bit, all and all she has been a great doctor but some of the things I have read about Rituxan scares me. I am glad to finally hear something positive about it from you. How long have you been receiving the treatments and how often do you have to go back for more.
Dealing with it on a mental level is a whole different thing, I do get support from my family especially my husband but they do not really know what I am going through and I have 2 small children and sometimes it is just hard to keep up. But I try not to let them see me down because they have witnessed me in so much pain that it has brought me to tears and the usually end up crying with me and that breaks my heart because they do not understand what is going on they just know that "mommy is sick". One time my oldest daughter(who is only 7) had to go and get my husband because I passed out in the bathroom, it is things like that I don't want them to see. I really feel like I am missing out on so much because I am always tired or in pain but they will come in sit in the bed with me and watch T.V. just so that they can spend sometime with me.
How about you....how to you deal? Are you able to work, my doc has taken me out of work again on STD and I just went back in Jan. after being out for 3 months. That's another thing of course nothing about the disease is cheap and my husband is footing most of the household bills now as well as my doc bills and even though he says it doesn't bother him I know that it is a strain. I just need to know that it is going to get better and I will be able to return to work because right now hope is so far away.
I'm sorry you are having such a difficult time - I also had young children when I was diagnosed, and I was really worried about how my illness would affect them. The good thing is that children are a lot stranger than we give them credit for sometimes, and as long as they feel loved, they do just fine. I lost all my hair at one point, and my boys got a huge kick out of making silly paper hats for me. It's hard to keep a normal life for them when you are tired and in pain, so it helps to have a backup system for child care in place in case you have to go to the hospital again. I'm lucky to have a big family with siblings, nieces, nephews and cousins all within a few miles of me, so there are always people around to take the kids to the park or go swimming with them, the "outdoorsy" stuff I can't manage very well any more. It's a lot easier now that the kids are older and can manage more on their own - when they were little, I was worn out in the morning before my work day even started, just getting them ready.
I certainly don't want to discourage you from Rituxan, but at this point it's still considered "experimental" for lupus, so some insurers won't cover it all and it can be very expensive. So you may want to get it authorized by your insurer beforehand just to be safe. And find out how much experience your doctor has in using it - how many patients he has treated with the drug, and whether any of them have had reactions to the infusion. As you probably know already, there have been some rare instances where people have died from infusion reactions to the med, so you want to make sure your doctor is experienced, and taking all the precautions he needs to. And if you have any kind of history of allergic reactions, you want to be sure your doctor knows about them.
I hope you and your doctors are able to find some answers soon.
Thanks for the advice Mary and I will make sure that I do ask all those questions before getting started. Also I will ask you the same question I asked Angela, are you able to work. Right now I ma trying to figure out what would be best for me and my family as far as working is concerened. I am back out of work on STD and I just went back in Jan. on a part time basis and I really find it hard to work right now because I am in so much pain and I am tired all the time, but I don't know if it would best for me to quit right now until I am better or try to hang in there until my docs find something that works for me. I don't know if Lupus is considered a disablity but it sure feels like one. Some days I feel just fine and I don't mind working and some days I don't even want to get out of my bed, of course not many employers find this suitable but I don't want to give up to soon. Are you working and how long have you been dealing with this. Mentally with all the meds I take on a daily I am about to lose my mind.
I've been diagnosed a little over six years now, and I still work, but I've cut my hours way back and work from home a lot. I was lucky enough to be working for a fairly large firm when I got sick, so I was covered by the Americans with Disabilities act and the Family and Emergency Medical Leave Act, so I could take some unpaid leave without losing my job. It was pretty clear I couldn't keep my same job because it involved lots of travel and major stress, but I was able to transfer to a different department within the same firm, fewer hours but the same benefits. It did mean a big pay cut, and with all the medical bills, it is hard sometimes. It's harder because lupus is so unpredictable - you can't know from one day to the next how you are going to feel - which makes it hard to keep a 9-5 job. It sounds like your job may be hard physically too, and that makes a difference. You might want to talk to your doctor and make sure he will be supportive if you file for disability. If you and your doctor are not sure you will b e able to go to work, it's better to apply for disability sooner than later, because it's a long process unless you have disability insurance through your employer.
hey ms. scott!
so sorry for just now getting back to u :shock: , im on the board several times a day and late at night, and i somehow missed this...thank god for marycain :!:
to answer yr questions, i do have a little girl, ladybug, whose just turned 5 and started kindergarten last august. just like u, it's so very hard. i was diagnosed in 2004, farily quickly after all lupus hell broke loose :lol: !!
so she was still very young. hubby and i just made no big deal about it. it's all she know's now. as marycain said, kids are pretty smart, and know what's going on, and they react to your action and reactions so we never lied to her, and gave her s much appropriate info as we thought was necessary for the situation. so far she is a happy well adjusted kindergartener according to the therapist. she has her moments when she wants mommy to give her her bath, or tuck her in. and i always feel just awful for her and me, which is probably the only thing i hide from her :!: but it is what it is. she comes to hosp w/ me when i get my infusions sometimes, and some doc visits, so she knows what's going on and that there's nothing to be afraid of. she's actually becoming a lupus warden! "mommy, did you take your meds? mommy, wheres your cane? yr walker?" my god, we laugh alot too.
im was self employed as a mortgage broker when all this happend. so no corp benefits, we pay our on, although i just got medicare ins thru disability last december. hubby has a regular corp job, and fortunately he has a flexible schedule, and the pay is just enough!! but its still very tight. its still quite hard. i still want very much to work! mainly to contribute to the finances, but to also feel "normal". i was able to do a little bit last year, but that was me promising not to for about a year. then WHAM!! i had a siezure out of the blue in october, fell down a flight of stairs, and that was that! funny how god works! thank god i had just taken my dauhter to school! so i am truly starting over now. i had to learn how to walk, my speech is affected, i have severe aphasia, and short term memory loss. that's why it takes me forever to type and i may not use the right words for things! :lol: i used to be what all the docs call 'highly functional'. it's frunstrating because i really do want to get back to how i was, but that's not happening anytime soon at least. so i just think about how far i've come, and celebrate that! and i can't lie to you ms scott, that's so very hard too. it's not fair to hubby and ladybug. at least w/ her, she only knows that we make her happy. i do get scared with her now, becuse she's getting older, understanding more, and what if i have a siezure bad enought that she's got to get help!! it's also different w/ hubby, ya know? it's now all on him, completely! i used to handle everything, all major decisions, bills, etc.. and i feel pressure (self imposed) to get better, which is not good, but again, we laugh A LOT! it's been a very dark few months for us ( hubby took fmla leave and went back last month), but we;re getting thru it. we talk alot, or i should say that i do (he's still a man :lol: ). i and he know's that he'll never fully understand, and sometimes i get mad at him because i dont think he tries hard enough, but i realized it's his own coping mechanism. but we talk.
there is hope, always ms. scott! hope that tmrow will be better than today. hold on to that and remind yrself of it every moment by moment if you have to. i do hope this helps!
be well ms. scott!