Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Thanks for the Orencia report, Jeanine. I wish you the best of luck with it. Do you mean that you have stopped taking Imuran, too? Not an MD [ ] Orencia Update > Wow, after several months of hemming and hawing and trying Immuran, I > finally started my Orencia 2 weeks ago. I had my second infusion > yesterday. > So far so good. I have had no adverse reactions, although I also have had > no relief. I know that it takes time (don't they all!) but, this is the > worst flare I have ever had. My pain sits around a 6-7 and my fatique > around a 9-10. I am hopeful though that the Orencia will work. There > isn't > anything else out there for me right now. I can't even take prednisone > for > breakthrough pain because I have begun to develop cataracts with the small > doses we used the first couple of years after my diagnosis. > > I am getting my Orencia infusions done at an Oncologists office. It is > really relaxed and they are very efficient. I am there for less than an > hour, 30 minutes of that is actually receiving the medication. The rest > is > waiting for a chair and getting hooked up and un-hooked up. I go straight > from there to work. Not as convenient as doing the injections myself, but > after the next injection it will only be once a month, and if it works it > will be well worth it! > > > > Jeanine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 I > because I have begun to develop cataracts > How could you tell? Thanks, Pris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 , Yes, I have stopped the Imuran as well. It was not doing any good and my liver and pancreas levels were starting to go out of whack. I have not had a lot of success with any of the oral medications that we have tried over the last 5 years. I am allergic to Sulfa so that rules out a whole list of them to start with. The MTX makes me so sick that I have to take the antidote in order to even begin to tolerate it, so we stopped that as soon as they could get me on the Enbrel. Arava made my hair fall out (that wasn't enough to stop taking it, but wasn't fun) and eventually began to cause IBS symptoms on a pretty severe scale That is when we stopped it. The Enbrel was enough on it's own for about 2 years and then it just stopped working. The Humria came out about a month later and we switched to it. It was my miracle drug. No problems, less illnesses (I had bronchitis almost every 3 months on the Enbrel and even had pneumonia a couple of times). It was great until last spring. I started having increased pain about 7-10 days after my injection so we increased me to a weekly dose. This summer that even stopped working. That is when we decided to try the Imuran on a fluke while we worked to get approval for the Orencia. It seemed to be helping, but not enough so we gradually increased the doses. December was the last straw for the Dr. My pain was no less on the higher dose and my bloodwork was out of whack, so we stopped it cold turkey and waited the last 2 weeks for the Orencia. Now I am praying the Orencia is my new miracle drug and will start to work soon. Hopefuly in the next 2 weeks I will begin to see the benefit. Until then I just have to keep going. At least I only work 3-4 hours a day and then I can come home and take a nap. :-) Sorry to go on so long, but figured you all deserved a full update. It's been a while since I posted. Welcome to the new memebers! You have joined a great group of friends and they will all do whatever they can to help you find information or just listen to you when you are hurting. Jeanine from FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 > I began to notice a change in my vision > Right, but can you describe these changes precisely?? Thanks, Pris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 > > , > > Yes, I have stopped the Imuran as well. It was not doing any good and my > liver and pancreas levels were starting to go out of whack. I have not had > a lot of success with any of the oral medications that we have tried over > the last 5 years. I am allergic to Sulfa so that rules out a whole list of > them to start with. The MTX makes me so sick that I have to take the > antidote in order to even begin to tolerate it, so we stopped that as soon > as they could get me on the Enbrel. Arava made my hair fall out (that > wasn't enough to stop taking it, but wasn't fun) and eventually began to > cause IBS symptoms on a pretty severe scale That is when we stopped it. > The Enbrel was enough on it's own for about 2 years and then it just stopped > working. The Humria came out about a month later and we switched to it. It > was my miracle drug. No problems, less illnesses (I had bronchitis almost > every 3 months on the Enbrel and even had pneumonia a couple of times). It > was great until last spring. I started having increased pain about 7-10 > days after my injection so we increased me to a weekly dose. This summer > that even stopped working. That is when we decided to try the Imuran on a > fluke while we worked to get approval for the Orencia. It seemed to be > helping, but not enough so we gradually increased the doses. December was > the last straw for the Dr. My pain was no less on the higher dose and my > bloodwork was out of whack, so we stopped it cold turkey and waited the last > 2 weeks for the Orencia. Now I am praying the Orencia is my new miracle > drug and will start to work soon. Hopefuly in the next 2 weeks I will begin > to see the benefit. Until then I just have to keep going. At least I only > work 3-4 hours a day and then I can come home and take a nap. :-) > > Sorry to go on so long, but figured you all deserved a full update. It's > been a while since I posted. > > > > Welcome to the new memebers! You have joined a great group of friends and > they will all do whatever they can to help you find information or just > listen to you when you are hurting. > > > > Jeanine from FL > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 Pris, I began to notice a change in my vision and when I went to the ophthalmologist they discovered the cataracts. I am legally blind already (birth defect) so I see a doctor every year. They know they weren't there the year before. We stopped the prednisone immediately and they have not gotten any worse in the last 3 years. Jeanine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 So sorry, Jeanine. What a trial for you. What is your physician's take on Rituxan (rituximab)? Are you RF+? Not an MD [ ] Re: Orencia Update > , > > Yes, I have stopped the Imuran as well. It was not doing any good and my > liver and pancreas levels were starting to go out of whack. I have not > had > a lot of success with any of the oral medications that we have tried over > the last 5 years. I am allergic to Sulfa so that rules out a whole list > of > them to start with. The MTX makes me so sick that I have to take the > antidote in order to even begin to tolerate it, so we stopped that as soon > as they could get me on the Enbrel. Arava made my hair fall out (that > wasn't enough to stop taking it, but wasn't fun) and eventually began to > cause IBS symptoms on a pretty severe scale That is when we stopped it. > The Enbrel was enough on it's own for about 2 years and then it just > stopped > working. The Humria came out about a month later and we switched to it. > It > was my miracle drug. No problems, less illnesses (I had bronchitis almost > every 3 months on the Enbrel and even had pneumonia a couple of times). > It > was great until last spring. I started having increased pain about 7-10 > days after my injection so we increased me to a weekly dose. This summer > that even stopped working. That is when we decided to try the Imuran on a > fluke while we worked to get approval for the Orencia. It seemed to be > helping, but not enough so we gradually increased the doses. December was > the last straw for the Dr. My pain was no less on the higher dose and my > bloodwork was out of whack, so we stopped it cold turkey and waited the > last > 2 weeks for the Orencia. Now I am praying the Orencia is my new miracle > drug and will start to work soon. Hopefuly in the next 2 weeks I will > begin > to see the benefit. Until then I just have to keep going. At least I > only > work 3-4 hours a day and then I can come home and take a nap. :-) > > Sorry to go on so long, but figured you all deserved a full update. It's > been a while since I posted. > > > > Welcome to the new memebers! You have joined a great group of friends and > they will all do whatever they can to help you find information or just > listen to you when you are hurting. > > > > Jeanine from FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 Nellie, Being legally blind to begin with, all I can really say is that I couldn't see as well as I had before. It wasn't blocked vision, it just wasn't as good as it used to be. Jeanine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2007 Report Share Posted January 23, 2007 , We talked about Rituxan but two things made it a poor choice for me. One is that you also have to take Methotrexate and I can't. My doctor's take on it very cautious right now. The infusion reactions are much more severe than the drugs we usually take, and he still has a lot of questions about how long you have to wait to treat differently if something goes wrong. After all, it basically kills the B-cells. If those are dead and you are sick and in a flare, you can't really start a new Immune suppressing medication until the B-cells are back in order. Still a lot of questions, but since I can't take the mtx it is somewhat of a moot point for me right now Btw: good news! The swelling in my hands is down considerably in the last 24 hours! Can't say I don't hurt, but I can see improvement and that is a definite start. Jeanine Quote Link to comment Share on other sites More sharing options...
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