Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 , I'm very sorry to hear this. Have you discussed Rituxan (rituximab) with your rheumatologist? Not an MD On Fri, Oct 24, 2008 at 10:51 AM, <cyninflorida@...> wrote: > Still trying to come to terms with having to stay in the hospital after > a bad reaction to my second remicade. Tried Humira, made my eyelids > swell. Enbrel did nothing. Can't try Orencia because of copd. My body > will only allow 7.5 mg of metho. anymore than that I get mouth sores. > I never post but I'm still trying to work full-time & I'm just really > tired, the bill for the hospital was over $10,000. > Sorry for the pity party. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Hi - I am so sorry to hear you had such a bad reaction to Remicade and are unable to use the others, either. Do you take Folic Acid on the days before and after the Methotrexate? I am taking 15mg MTX per week and 1mg FA every day except and I've never had the mouth sores. Also you might talk with your Rheumy about MTX injections instead of pills - I've heard there are a lot less side effects. I will be taking my first injection next week. Do you not have health insurance for the hospital bill? I see you live in FL like me. There should be some kind of arrangement you could make with the hospital based on your household income. Best of luck to you. Where is the pity party? I didn't see one.......Doreen > > Still trying to come to terms with having to stay in the hospital > after a bad reaction to my second remicade. Tried Humira, made my > eyelids swell. Enbrel did nothing. Can't try Orencia because of > copd. My body will only allow 7.5 mg of metho. anymore than that I > get mouth sores. > I never post but I'm still trying to work full-time & I'm just > really tired, the bill for the hospital was over $10,000. > Sorry for the pity party. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 , It is understandable that you are so down. In Doreen's post she said that the hospital should have a system and I agree. I have known several people in my state that did not have insurance and the hospital made adjustments to the bill. I hope you find some help. I know that it is very difficult for you. Shirley > > Still trying to come to terms with having to stay in the hospital after > a bad reaction to my second remicade. Tried Humira, made my eyelids > swell. Enbrel did nothing. Can't try Orencia because of copd. My body > will only allow 7.5 mg of metho. anymore than that I get mouth sores. > I never post but I'm still trying to work full-time & I'm just really > tired, the bill for the hospital was over $10,000. > Sorry for the pity party. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 , I'm very sorry for all your going through. Have you ever thought about mtx injections, instead of the pill form? When I was taking mtx pills, I also had mouth sores, along with some other problems. I hope your doctor will find something for you that agrees with your body. I know its hard for you working FT. Sending a little bit of sunshine your way, Tawny > > Still trying to come to terms with having to stay in the hospital after > a bad reaction to my second remicade. Tried Humira, made my eyelids > swell. Enbrel did nothing. Can't try Orencia because of copd. My body > will only allow 7.5 mg of metho. anymore than that I get mouth sores. > I never post but I'm still trying to work full-time & I'm just really > tired, the bill for the hospital was over $10,000. > Sorry for the pity party. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Just curious did they try giving you premeds before the remicaid. I know some folks take tylenol, benadryl, and some even decadron or solumedrol so they can tolerate the remicaid, but its not for everyone. Hope your feeling better soon. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 I just wanted to extend my thank you to all of the responses to my post last week about feeling down about our . - especially to you- I think you worked some magic and talked to our therapy center- because the speech therapist called " out of the blue " on Wednesday- right after my post- because she could " feel " that I've been a little down about 's progress. To everyone that posted back to me- all of your advice, and info was very helpful. I appreciate all of the stories and experiences that you've shared with me. I admire the people in both of these groups that I belong to- because everyone is so dedicated to their children. It was also helpful for me to feel normal about feeling down once in a while. I've done a lot of self reflection over the last week- and realized I was sad because I want to talk so bad, but I realized the most important thing right now is that I am doing everything humanly possible to help her. She will do someday, I am sure of it. She is the happiest kid on the planet and her smile lights up a room! I don't want to miss out on all of that. Thank you- Sandy Tanana www.nataliehopesjourney.com Quote Link to comment Share on other sites More sharing options...
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