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#457628 12/06/11 03:09 AM
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My rhumy wants to try me on remicade, it sounds like a good idea but i am debating whether it is worth driving the 5hrs to get the infusion. I asked if there was a way we could set it up down here but they said they will have to see how I react? I am not sure what that means.
I have von willabrands disease (a bleeding disorder) so treating it is very tricky. I can't take any nsads, haven't been able to for about 5 years before because of a hernia. The last coulple days have been the best I have had since the end of summer so...
I might have to wait untill after christmas. any way has any one had a good change with it, would you drive 5hrs to get it? waying pros and cons
Thanks ahead of time.


live life for today, not tomarrow, or yesterday
mommyperks #457630 12/06/11 04:23 AM
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Don't go by yourself, I am severely dizzy for several hours after I take it. Also it has to be done by a nurse because your blood pressure can stop out the bottom or go too far high. I have tried all the injections and so far remicade is helping more than the rest. I am not sure about your insurance but found if I got it done at my Dr. Office then I had to pay 750.00. I then found out if they do home health infusions or go to a home health infusion center my insurance would cover it 100%. I do have to travel 1 hour to get it done but the 750.00 savings is worth it.


HLAB27+ A.S for 2 year. Humira, Enbrel, Simponi all tried now moving on to Remicade. Meth, sulfa, tramadol, etc...
mommyperks #457683 12/06/11 08:44 PM
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I drive an hour and a half and am having my second Remicade I.V. right now. The first one was great. I had a lot less pain and now we will see how this one goes. Blood pressure was realy low today so I think it is important to have it done at the hospital.


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
mommyperks #457699 12/07/11 12:52 AM
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My reaction to Remicade has been so amazing that I can say for sure that I would drive 5 hrs for infusions.

That said, all patients differ in response to therapy and not everyone will be as lucky as I have been, unfortunately.

One idea would be to try the first 3-4 infusions to get a sense of how well you might benefit... that may make the decision much easier for you, if you respond really well!

I have been on Remicade for 7 yrs and felt dramatically better on the 4th day after my 1st infusion. As the saying goes, your mileage may vary.

Given your other disease, it might be best to have it in a hospital setting, at least until you know how your body responds. If it all goes well for awhile, then you could ask for them to set you up somewhere closer. A 5 hrs drive is awfully far.

All the best to you!!
mig

mommyperks #457761 12/08/11 12:06 AM
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For instance it seems to be working better than most for me but I had dizziness and severe fatigue issues. I also got a huge rash on my neck/chest that won't go away. Its been there for 8 weeks now. It doesn't hurt, itch, burn ect. It just looks horrible. The dr said it is just isolated and as long as it isn't giving me problems then not to worry about it till I have had 4 or 5 infusions. He also said my fatigue, dizziness and rash are more than likely my body adjusting to the medicine and will hopefully subside/dissapear in the future. I would drive 5 hours for it. I drive 2 hours everytime now but I would definitely call around to home health business's to check and see if one is closer. They will have nurses present during the whole thing and are normally abundant. Good luck with it all.


HLAB27+ A.S for 2 year. Humira, Enbrel, Simponi all tried now moving on to Remicade. Meth, sulfa, tramadol, etc...
mommyperks #459493 01/05/12 03:01 AM
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I have been taking Remicade for about 18 months. I do very well on it, well enough that I am considering a port put in so I can continue with the infusions. When I receive my infusion I very rarely make it to the end of the treatment without falling asleep and am in no shape to drive. The rest of the night and the entire next day I am fairly useless. I might do the drive for the first couple of treatments and then discuss with others in the area or perhaps the insurance company what my other options were with location. Best of luck to you!


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