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Old 01-30-2013, 06:34 PM   #1
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dosage of Remicade most oeiole with RA are taking

I started taking Remicade infusions 5 months ago, and am now at 400mg. This is my fifth biologic medicince. None of the previous ones worked. Considering each trial uses up 6 months to a year of my life, and drains my pocketbook with no effect on my illness, it is getting frustrating to say the least. I can't tell if this is working yet, and was just wondering what dose most of you are on that actually gave you some improvement. I have 6 months to go before I hit maximum dose, and if this doesn't work, there went another year of my life and thousands of dollars down the drain. I am trying to hang on to some hope, but it is getting very hard to do.

 
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Old 02-11-2013, 07:28 AM   #2
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Re: dosage of Remicade most oeiole with RA are taking

Dear Ladybud,

I can hear your scream and feel it too. I know exactly how you feel about it. I am lucky to have RA DR who is very honest about all treatments and never tells me to just continue in case it will help.
She doesn't believe in risking her patients life and continue treatment of specific drug if it doesn't show any improvement in few month. I was taking off Enbrel shots in no more than 6 weeks; she said by than I had to show some improvement and if I don't - she tries something else.
Let's face it, all RA drugs bring immune system down which can be dangerous since every little infection can be fatal. Biologics are high risk drugs, we know that. So it was painful for me to read one post on one of the boards where a lady said that her DR told her you will not see any results of Orencia before you on it for 6 month. Even though I am not a DR, but I know this is not true. Lucky those who can get into remission and stay on drug for a prolong time, but I had many consultations with good RA doctors, I read tons of material on RA drugs and all of them saying if you don't see results in first few month, it means this drug is not for you.

I was on Ramicate and before I hit 400 mg I was taking off it since my RA DR said no need to go further, it did nothing positive for me.
I don't know your situation, but my RA is very advanced with many damages done to my body even though I am far from being old.
I understand your frustration because same here. Out of all, too many, different drugs and biologics (I practically had them all) only once, Orenica infusion, put me in remission for a short time. This was such blessing and I thought it will continue for at least a year. Never happened.
I started to feel much better only after my 3-4th infusion. But it all was @ square 1 after 6 month.
My doctor with much precautions decided to try Ritaxan infusion. They all were very alert of this drug at Infusion department at HSS. It was suppose to be 8 hr infusion; I was doing very well for 2 hours and sudden, in about 30 seconds everything changed and they had to fight for my life. They had oxygen tanks around me in no time and so much more which scared all patients around me who got different treatments.
They told me that some people reacted to Ritaxan but never this bad. I was one purple looking woman covered in huge water blisters and hives who gasped for air.
Drugs we are on is not a joke. I just wish they would be helpful to more people. For the cost of them, you would think they bring more remissions and feelings well but unfortunately its not a case. In years and years of treatments, only one remission and even that was short live. So of course I hear you girl...

May I ask you if you tried to get some co-pay help? Some organization still open for RA patients so try and maybe you will get some help at least. I can't even imagine to pay out of pocket for the whole thing.

Wishing you well, hope this treatment will be the answer for you dear heart.

Moldova

 
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Old 02-11-2013, 08:18 AM   #3
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Re: dosage of Remicade most oeiole with RA are taking

Thanks, Moldova. I am so sorry your disease has also been resistant to so many treatment trials. I am currently on 400 mg Remicade and need to go up (still having flares). I am paying 20% copays, so over 350.00 each month just for infusion. Remistart program apparently doesn't help people on medicare! Why not? I'm on Medicare because of disability, not age, so can't work. I need help just as much as others. Frustrating! Anyway, Ive tried Orencia, Enbrel, Benlysta (I have SLE too), Rituxan, now Remicade. Nothing seems to help except Prednisone, but I am breaking bones and want off it!
Thanks for your kind and empathetic message. It helps to know we're not alone in struggling with our bodies which seem to be in combat within themselves. I hope you find something that helps you!

 
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Old 02-12-2013, 07:41 AM   #4
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Re: dosage of Remicade most oeiole with RA are taking

Agree 100% and it is very frustrating. I met my ex co-worker who had few surgeries on her hands done due to a very disfigured hands (RA) but this lady has no pain, and on top of everything she is on MTX and Enbrel combination for many-many years and it works wonderful for her. She is 82. I am not even near this age and nothing is working for me.

I like my honest RA DR. She tells me truthfully that I am not alone and that she has patients for whom biologics are not the answer. When I was offered to volunteer for RA research group I met wonderful people with same advanced RA, all of them are not being helped by any of RA drugs. I was lucky enough to attend lecture by a Professor of famous NYC Hospital who specializes in advanced RA who is in doubt if any of RA drugs we have available are actually helpful. Many other specialist agreed with him.
Why?
They said that people whose RA in question or they have mild RA they can't justify if drug really works or not. Many people never had RA but their doctors misdiagnose them and put on treatments so how they really can tell if drugs working or not? Another thing, many doctors keep their patients on Prednisone and add RA treatments to it.
My first RA DR puts me on Enbrel and Prednison. I got better and he told me I am responding good to Enbrel.
The minute I went off Prednisone, all my symptoms came back and Enbrel by itself did nothing for me.
When I discussed all this with my RA Dr she said that a lot of inconsistency with RA treatments. Meanwhile all of them bring our immune system down and making us ill and very weak. I don't mind to go through this if treatments work but why risk your life if nothing is working?
I am with you, this is really upsetting. I am on so many treatments for years and during all this time now my lungs and heart what you call "RA Lung and RA heart" not to mention I came into RA world with normal hands and now they very swollen and show RA changes . Not to mention all my joints/cartridge/muscles, etc are affected by RA. I hope this is not one of the drugs short live and than fly off shelves as many others.
I never paid for infusions, it was done at the Hospital; my insurance covers hospital facilities but I have to pay every month co-pay of $200 for each Orencia delivery.

Lets hope they will finally create a drug which will help people like us, who cant get any relieve. I just hope by that time we are able to walk... lol

Feel better please
Moldova

 
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