my blood work showed the inflammation in my blood is still high but came down a little. So it shows the Trexall is working. He said not enough though, and instead of upping the Trexall he is just going to put me on Remicade. He said he has had a lot of good results from it. So now off I go to get a TB test. He is going to see if my insurance will pay for the Remicade. if not he goes right the people who make it. He gave me the CD that comes with Remicade and told me he is the RA doc on the CD! So if any of you have the CD that comes with Remicade he is the RA doc in the beginning of the CD.. He said since the Trexall is costing me so much money he will write it out for Metho since that is the gernric of Trexall. So I will have to take 6 pills instead of one. He said the mouth sores may not be from the meds. It could be Lupus and yes it is the lupus Mask on my face. sigh... He wants me to try the 5ml of Prednisone. He said if it bothers your heart call me right away. I should not be in all this pain. I was reminded by him that i also have Fibermayalga and that is also painful. I should be walking better though and he is just going to start me on the Remicade.. I am so tired from the very bad day.. I had a lot of upsets today and I am shot! Good night everyone and sweet dream
HELLO, MY NAME IS CARM AND I HAVE RA AND LUPUS. STARTED OUT WITH FIBROMAYGLIA.NOW TAKE METHOTRAXATE, PAIN PILLS, NO PREDISONE UNLESS I HAVE A REAL BAD COLD OR WORSE . I ALSO HAVE ASTHMA WHICH DOESN'T HELP. I 'M SO SICK OF BEING SICK.I REALLY FEEL FOR ANYONE THAT IS ILL.
Bit of a good news-bad news thing, huh? Glad you're getting more meds so hopefully, your pain will go away. Sorry to hear about the possible lupus - that's a bit of a mouthful to absorb. Keeping everything crossed for you.
Thank you.
I am scard though to go and get this drug, not that it is IV form, but I am scard of a bad reaction and what will happen to me. I know I should only think of the good it will do for me. But still I am scared.. The Lupus thing has been hanging over my head, since so many in my family has Lupus. I am not ready to deal with that and until I have blood test that say for sure it is lupus I do not want to think about it. I am however starting to get sores up my nose.. For years I did not want to face any of this and I guess what I am going to do is face this drug first.. My doctor is going to see me when I get this treatmant, and he said he will keepa good eye out on my for the Lupus. I think he felt he through enough at me at one time. Lupus I am not ready to face..
I did not tell him about the sores in my nose and in my one ear. I know my bad.. In fact it is right now that I am telling anyone about it. My sister who has Lupus takes celebrex, and Prednisone. She has a new med for the lupus all over her body. Shampoo for her hair since it is all on her head. Up her nose in her mouth. I use to say to my sister all the time. I can not be brave like you and go through all you go through. Now look at me.. I am going through it too. I guess I should not have said that.. lol..
d€o we every really get our life back? I feel in some ways but I think once you have Ra ou alwys have RA. God and maybe now Lupus. Why did I have to get both! I mean I am NOT the brave on here. My sister is! Oho well I am not going to go down that road until I know for sure. It could takes years to get an positive Lupus blood test.. I can hide my face with good cover up.. My next step is a TB test.. yuck! and then this IV drug.. Yuck.. as long as it takes away this pain i feel it is worth it..
If anyone has taken this drug please let me know what you think.
Hugs
Sue
One of my friends and I call it "doing a Scarlett", as in Scarlett O'Hara from Gone with the Wind when she said "I'll think about that tomorrow." It's a perfectly acceptable coping mechanism - allows you to deal with it almost in your subconscious instead of freaking out. Well, some of the time, anyway. ;) If it is indeed lupus, I'm glad you have your sister to help you through it. That's going to be a huge help.
You don't get your life back the way it was, but you do create a life. It's different than before and it does have one more "person" (the disease) in it, but much of the time, life is the important thing, not the disease and life goes on. Your family, friends, kids sustain you, you get mad at the driver that cut you off, take your painkillers and get lost in the taste of a yellow plum. You laugh and sometimes, you laugh at the disease. Other times, you find it gives you something you wouldn't have had without it. It doesn't just take away, it gives, too.
I haven't taken Remicade (yet?), but I hear you on being scared of it. Enbrel, Humira and methotrexate, for that matter, scared the pants off me. The lead-up when it's still very theoretical is the hard part, though. Once you've started the drug, it gets less scary - the benefits have a way of outweighing the risks.
Remember to breathe, preferably deeply. You'll get through this.