Yeah, I was like you when I got put on Remicade. I was bed bound, but I did not stay that way even though being out and about brought on more pain, swelling and a host of other painful problems. I was a little stubborn... so sue me.
I have to travel 1hr there and 1hr back to get my infusion, and in the beginning, I had to go 4 times within 2 months to get the loading doses. What bothered me the most was the sitting up for hours straight. It killed my back & neck. I even went one time for a loading dose while I was in a full on flare, where I could not turn my head and everything else was swelled. They gave me a steroid IV to help with that flare.
But the infusions, for me, are worth the hassel. Heck going to wal-mart in a full on flare and not being able to bend my knees to walk right was worth the hassle... LOL! No, I just like to get out of the house, but hate to use the electric carts.
Keep us posted on how it goes for you.
"steroid-full on flare"
I begged my Dr. to put me on a steroid for the past year, he says no because of my Diabetes... I am even willing to go on insulin- the pain is so bad, but steroids are not in my future... I've heard it helps a lot...
Thank you for the post...
Is there any way to set up e-mail notification on this forum, so I know when someone has posted to me?
Peace to you Joonie...
Critter, if there is an e-mail notification, I never found it. It would be so helpful, wouldn't it? Especially since many of us here have "chemo brain" from the MTX, including myself and can't always remember which threads I posted on.
Can't you try the MTX injections before going to the infusions? My RD said injections are 20-30% more effective and since it bypasses the stomach, many people find they no longer have sickness issues. I didn't have stomach problems but was given the injections because the MTX pills weren't helping enough. The injections took several weeks to kick in but I did get much more relief than the pills. It's worth asking your doctor about it.
Hey critter.. sorry you're having such a tough time of it..
I've found that I can battle the bad feelings from MTX by drinking loads and loads of water the day before.. they day of.. and the day after I take the med..
Also.. my RD told me that I could take a dose of a cough med w/ dextromethorphan in it before dosing w/ MTx and the next day as needed to overcome the hangover headache that sometimes comes..
my best to you..
I think that if you bookmark the thread or take a copy of the link in your address bar you can find them better.. I do that with those that I am really keen on following."e-mail notification"
We have this on the ADA {diabetes} forum and yes it does help, also, we can choose the option of "high interest" and everything we've posted too comes up... lot better...
"MTX injections"
I'm not bothered in the tummy- it's the 4 day total body-muscle aches that get to me... it hasn't been too bad this week, maybe it's decided I'm not a good candidate for this kind of pain on top of everything else going on... I'll talk to my RD in Sept. about injections- knowing nothing about the process and hoping I can do them at home...
"loads of water"
Being diabetic I already drink more then enough fluids, but will do even more on dose day, thank you for this tip... Have learned to always take it with a meal...
Peace to you both, Jesse & Babs...
Welcome critter. Does being a diabetic rule you out for other medications like Humira and Enbrel which are given by injections? Infusions aren't really the next step after MTX unless there's a reason you can't take one of the other biologics."Humira and Enbrel"
Only if they are steroids... Not knowing much about the different drugs & having only been on meth for a year there are a lot of questions I need to ask my RD... Maybe he was just trying to scare me- saying the next step would be infusions- he's that type... I'm making a list of questions for the next visit, hoping to get out of the "follow anything he says to do without question" mode...
Peace to you Lovie...
Critter - in your original post you said your blood work is ok - I would find out if this is an increase in the medication via infusion or the same amount via infusion. If its more and your blood work is good, I would ask why is it being increased. These increases cannot be taken back and you only can go so high with dosage. My two cents. Take care Cathy"via infusion - These increases cannot be taken back and you only can go so high with dosage"
My pill dose is 2.5mg- originally I was taking 6 a week, after several months he reduced it to 4 because of my liver panel... he has since upped it to 5 & I believe he's trying to get it back to 6... In all honesty, it seems not to be helping much- almost the same pain as when dxed... I'm really scared of this drug though & there is so much to learn...
Peace to you Cathy...
I really felt little relief w/ MTX til I got to the 8 pills a week dosage.. Understandably you can't do that since it's already messing w/ your liver panel.
You are right.. there IS so much to learn...
I'd ask, as was suggested, about the biologics and opposed to jumping into an infusion situation..
Good luck
jsnm~If you're thinking he means MTX infusions I've never heard of that. Do they do that? Why would they do that? I think he's talking about trying a different medication.
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