Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 It looks that the treatment that my daughter will start will be enbril. Any suggestions? I had heard that it seems to work rather quidkly if it is going to and that it can cause an itchy raised hive at the injection site. We still see Dr. Cush this morning but finished with her other RH yesterday. All other meds should be slowly decreased if all goes well. Lea Subject: Remicade today. Real Tired To: Stillsdisease Date: Monday, July 28, 2008, 8:56 PM Well, got my Remicade infusion today. Slept through most of it and am ready to go to bed early tonight. It has sometimes had that effect on me in the past. RD visit also. Described the salty taste in my mouth to her and after further questions, including the comments from my dentist about my dry mouth and appearance of my mucous membranes, she thinks that I have secondary Sjögren's syndrome. From looking it up it has same symptoms as primary Sjögren's syndrome. Secondary seems to be related to RA and Lupus. Therefore more than likely to AOSD as well. The dry mouth can lead to loss of teeth, cavities (I am having a crown removed on Wed to take care of a cavity) and also frequent recurrances of Thrush. hmmmmmm? Have heard of some of you out there with those things as well. She put me on Evoxac sample to see if it helps. Other than that I am in great shape for the shape I am in. BTW - The pos thing about the Sjögren's is that I have lost some of my taste for sweet things like deserts. So, I lost 10 pounds from my last visit with the RD. Maybe I should leave it alone til I lose another 20 pounds. Whatcha think? Fuzzy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Shanon Just in case I don't get good ressults from my new Rd. Who did you see at the Cleveland clinic? Thanks VIVI **************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Lea: I'm on Enbril and I have to tell you it took the better part of four weeks before I felt anything at all. It has to stay in the fridge until you're ready to use it but make sure she takes the shot when it's cold and do it slowly so it won't burn too badly. I've gotten those " raised " spots from the injection but to be honest I just put Aveeno on it (powder made into a paste) and it helps me greatly. I did have to go off it for a couple of weeks due to an infections but it seems to stay within the body for a long time. Oh, one more thing and it may just be me, but I get very emotional for a day or so after the shot. Just something to be warey of. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Ellen , Thanks decided that she wanted the injectable that injects on its own. Dr. Cush explained the difference but I think she is concerned about giving the shot herself. If the other a lot more painful because it is quick? Thank you for the other tips. She starts on Thursday. She needs to get results from a TB test first. Lea Subject: Re:enbril To: Stillsdisease Date: Tuesday, July 29, 2008, 1:40 PM Lea: I'm on Enbril and I have to tell you it took the better part of four weeks before I felt anything at all. It has to stay in the fridge until you're ready to use it but make sure she takes the shot when it's cold and do it slowly so it won't burn too badly. I've gotten those " raised " spots from the injection but to be honest I just put Aveeno on it (powder made into a paste) and it helps me greatly. I did have to go off it for a couple of weeks due to an infections but it seems to stay within the body for a long time. Oh, one more thing and it may just be me, but I get very emotional for a day or so after the shot. Just something to be warey of. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Lea: I'm so happy to hear you're going to Dr. Cush. I've heard great things about him. I take my shots on Thursday as well, usually in the afternoon (around 3 or 4). There'a reason behind it. Don't be surprised but until becomes used to the shot she may experience " the runs " for a day or two. It's not unusual, just inconvenient. I know, come 8:30 a.m. Friday and Saturday mornings I had better be near a bathroom. It just seems to happen that way until recently. I have another friend that takes the shot as well for something else and has been for about 5 months. He still experiences " the runs " . Again, not unusual at all. Embarrassing as this may sound, last Friday I had to take my car to the dealership (it's a leased Jeep) for an oil change. I wanted to wait for it so I went to their little cafe and was on the phone with my sister when I suddenly realized I needed to " go " . Squeezing my tuchus (yiddish for butt) I managed to waddle my way to the ladies room to find it occupied. I've done the one thing my mother said I should NEVER do and went into the men's room. Hey! I didn't have much of a choice and I locked the door. I brought an extra pair of underwear and a plastic bag just in case and I was right to do it. I didn't quite make it. I can't believe I've just told that for everyone to read. There is no more dignity in me. Shall I also tell you about...you know, never mind, I have to have some secrets. Go ahead, chuckle. I did. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Ellen, Thanks all the helpful hints are great. will be leaving in about 3 weeks to go back to University of Texas for her senior year and knowing what to expect or the possibilities can prevent a number of difficult scenarios. I guess the big decision now is deciding whether she does the shot herself where she can give it slowly or let the little machine do it which will be fast. Lea Subject: Re:enbril To: Stillsdisease Date: Tuesday, July 29, 2008, 2:11 PM Lea: I'm so happy to hear you're going to Dr. Cush. I've heard great things about him. I take my shots on Thursday as well, usually in the afternoon (around 3 or 4). There'a reason behind it. Don't be surprised but until becomes used to the shot she may experience " the runs " for a day or two. It's not unusual, just inconvenient. I know, come 8:30 a.m. Friday and Saturday mornings I had better be near a bathroom. It just seems to happen that way until recently. I have another friend that takes the shot as well for something else and has been for about 5 months. He still experiences " the runs " . Again, not unusual at all. Embarrassing as this may sound, last Friday I had to take my car to the dealership (it's a leased Jeep) for an oil change. I wanted to wait for it so I went to their little cafe and was on the phone with my sister when I suddenly realized I needed to " go " . Squeezing my tuchus (yiddish for butt) I managed to waddle my way to the ladies room to find it occupied. I've done the one thing my mother said I should NEVER do and went into the men's room. Hey! I didn't have much of a choice and I locked the door. I brought an extra pair of underwear and a plastic bag just in case and I was right to do it. I didn't quite make it. I can't believe I've just told that for everyone to read. There is no more dignity in me. Shall I also tell you about...you know, never mind, I have to have some secrets. Go ahead, chuckle. I did. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Lea honey, I had the choice as well. I took the one that I do myself. The " pen " is a 10 second shot but it did burn quite a bit, almost like a bee sting. The other one I can control how fast or slow I do it and since I do it slowly it doesn't burn anywhere near as badly. Considering it's only once a week at this point, for me, I'd rather control it myself. Mind you, I'm a Mom amd wife. I have a 15 year old son, teaching him to drive (Florida allows children to get their permits at 15) and I work part time, as well maintaining a home and taking care of our dogs. The point being, it's an individual choice and it bares discussion. Perhaps you should call the company that makes Enbrel to get other information. If you'd like to email me personally please feel free to and do give my email to you daughter. She may have questions as well. Zovtic@... Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Hi Lea, It's been awhile, but I took the Enbrel premix. It did sting a bit...but it's over pretty quickly. I also did Kineret that I controlled how fast it went in and it would also sting....probably not as much. I liked being able to control how fast I would inject it...and would say if given the choice, I prefer the do-it-yourself. It's really not a huge difference though...and it's so fast it's not worth worrying about. I promise you. I was scared to death too...at the thought of injecting myself...but it's really easy and she'll adapt quickly. She'll wonder why she was scared. The main thing is that it works for her! You're so lucky she got in to see Dr Cush. I tried last year and he wasn't seeing any patients at all...so I ended up going to the Cleveland Clinic. It was good, but I sure would have preferred staying closer to home. I'll be anxious to hear how does! in San > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Lea, As a fellow UT grad, Hook 'em! :-) Regarding the shots, I've only done the do it myself kind and after a few shots you learn the tricks to make it not really hurt. I was scared at first too. But I found now it's no big deal to stick myself every day (I'm on Kineret now). Let us know how she does. It's great she's going to see Dr. Cush! Houston, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 Lea, While I have not taken Enbrel yet (it is next on the list if Humira doesn't work) I personally would not chose the pen that does the shot automatically for me. I have learned from other injectable medications that I prefer to be able to control how slow or how fast I give the shots. This is just my personal opinion. Of course you have to take into account I learned to give shots and castrate pigs, and clip teeth on the newborns(this is so they don't hurt the sow's nipples when nursing and cause an infection) when I was 10 (it would have been when I was 8, but it took me 2 years to convince my dad that just because I have allergies doesn't mean I needed to be banned be in the Hog barns). I did a lot more on the farm, but I don't want to gross the non-farmers out. Take Care & I hope the Enbrel works. Fayette, OH Quote Link to comment Share on other sites More sharing options...
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