Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Hi everyone- I saw my Rheumatologist today. We discussed Remicade and my rejection of it. Looks like Humira might be in my future. I had a bone density, with alarming degeneration in my spine and hips so it looks like actonel will be added to my never ending cocktail. A new drug called Rituximab in looming near in the future, and while given by I.V. it works with the IL-6 Protein and blocking the cell binding proteins that the disease causes. He talks to me like a colleague which I am thrilled about. My fingers are like sausages and my feet too, but hopefully with my infusion Wednesday, I might feel a bit of relief. We shall see. Just thought Id update everyone. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Deborah, There are a lot of people taking Rtuximab brand name Rituxin...its really not a new drug and has been used to treat cancer for quite some time now. It has been used off label to treat those not responding to other RA meds. All the local Rheummies here use it in trial studies programs. I was offered it two years ago and refused as soon as the said I had to be on MTX about 15 mg a week and that it was yet another chemo drug. Good luck...maybe it will be of help to you. Is your Rheummy doing the trial studies with Rituxin? If not go to FDA clinical trail watch and look for studies in your area. You may be able to get in one. Toni In a message dated 5/17/05 6:52:07 P.M. Central Daylight Time, Rheumatoid Arthritis writes: Date: Tue, 17 May 2005 02:55:59 EDT From: dbargad@...Subject: Re: News from RDHi everyone- I saw my Rheumatologist today. We discussed Remicade and my rejection of it. Looks like Humira might be in my future. I had a bone density, with alarming degeneration in my spine and hips so it looks like actonel will be added to my never ending cocktail. A new drug called Rituximab in looming near in the future, and while given by I.V. it works with the IL-6 Protein and blocking the cell binding proteins that the disease causes. He talks to me like a colleague which I am thrilled about. My fingers are like sausages and my feet too, but hopefully with my infusion Wednesday, I might feel a bit of relief. We shall see. Just thought Id update everyone. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Dear Toni- The RD did say its in trials right now. At my infusion center in the past year, there have been a flood of people with RA and like conditions. They infuse me too fast, and have been for some time, and the doctor is upset about that. Its really awful getting an infusion there now, with Sharps containers full of empty plasma bags and needles. Its getting so I dont even want to go in there now. Its the only infusion center in southern maine and everyone gets funneled through there with all sorts of conditions. They give Chemotherapy there, transfusions and everything in between. I should be infused over four hours, but its only three. At the Drs office I used to be infused every two hours. The RD wants to see if the remicade has stopped working altogether, so wants another few infusions to see. Thanks for the news. Its encouraging. Yours, Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 Deborah, I am so sorry to hear that. Are they violating your doctors order? Seems if he wrote for infusion over 4 hrs and they shorten it that would create a problem. I would talk to your doctor about writing VERY specific orders..time..rate...need for benadryl, nausea meds or fever meds to be given before or during infusion. Its sounds like the infusion center is a real mill...I hate those kinds of environments. Most of the RDs here in central Texas do there infusions within there clinics...so its nice to have the attention of there staff and the doc is onsite incase there are problems. I wouls ee if your doctor was willing to do that or to group with other docs to handle just RD patients. If you feel that this center is in violation of health or safety codes you can always report them to your local health dept. I would also report any physician's orders violations to your doctor as well...as well as the licensing agency for the clinic. That usually get there attention. I use to work in dialysis center so I know what you mean about the large volumes of medical waste generated....but there are ways to handle that so the environment remains clean and orderly to the both staff and patients... it really sounds like they are so over loaded that they do not have enough time to clean and prep as they should have... Is there another clinic or hospital that also have a cancer treatment center that can do your infusions? Good luck Toni In a message dated 5/18/05 3:36:08 P.M. Central Daylight Time, Rheumatoid Arthritis writes: Date: Wed, 18 May 2005 00:29:49 EDT From: dbargad@...Subject: Re: Re: News from RDDear Toni- The RD did say its in trials right now. At my infusion center in the past year, there have been a flood of people with RA and like conditions. They infuse me too fast, and have been for some time, and the doctor is upset about that. Its really awful getting an infusion there now, with Sharps containers full of empty plasma bags and needles. Its getting so I dont even want to go in there now. Its the only infusion center in southern maine and everyone gets funneled through there with all sorts of conditions. They give Chemotherapy there, transfusions and everything in between. I should be infused over four hours, but its only three. At the Drs office I used to be infused every two hours. The RD wants to see if the remicade has stopped working altogether, so wants another few infusions to see. Thanks for the news. Its encouraging. Yours, Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2005 Report Share Posted May 19, 2005 Thanks for the support and advice Toni. I was supposed to go in today for the infusion but had to cancel. I am going to have to reschedule next week. I will let you know what I find when I go. It is scary and a bit gross. They are terribly busy. I cant do mornings so after the morning and early noon hours, alot of waste is generated I guess. I will let the RD know about that. Yours, Deborah Quote Link to comment Share on other sites More sharing options...
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