Hi there,
A friend told me about the board and I thought I would come visit. She thought maybe you could help me. After my dx'es of Lupus then RA several years ago I went down hill from one dx'es to another UGH. Organ involvement, CNS, positive d-dimer for blood clotting, vasculitus from that I've had a portacathe for three years, and a year ago plaque showed up in my arteries, heart, also on meds to keep the fluid from around my heart, theres more, its been a mess I'm 44. I have many friends with Lupus but non with both RA and Lupus. My doctors are very frustrated right now because I am a rare breed and am highly ellergic to Prednisone, so I get Selu-Medrol infusions. I've been on Methotrexate injections for several years now in conjunction with RA drugs, Embrel then Remicade couldn't tolorate Arava something like that lol. Now I am on Humiria with my Metho. I've been on this one for three months now. They tend to work for a while, me always thinking this will be the one only to have to switch to another, its very frustrating. Rheumy said the Humira is the last in its catagory so I'm praying this will be the one.
The problem is I'm very sick right now with infections, kidney, ear and throat, at the same time I'm flaring with my Lupus or RA, Bones hurt and my rash is red hot on my face. Sooo tired. I'm on antibiotics and had Selu-Medrol Friday and Rheumy said no Metho or Humiria until these infections are under control. The problem is the RA drugs can make my Lupus worse so everything is a catch 22. I wish I had people I could talk to who have both diseases and are being treated for both. Its very hard to cope right now although I keep plugging along and doing what they tell me to do. To be honest I have been supporting so many other people with these diseases it kept me from looking at what was going on with my own health and being sooo sick right now I think the reality has started to hit me. My Cardio told me a couple of weeks ago, Theresa every single lab test we did that pertains to my heart is not good,,I said ok so what am I suppose to do about it? As if I can change it. I'm trying. I'm just very frustrated right now and needed to talk in a safe place. Thank you if you read this I know it was long lol.
Hey Yellow Rose, just wanted to welcome you to the board. Im sorry your having such a hard time hun :( I dont have Lupus but I do have RA and know what its like to be frustrated, tired and in pain all the time. I hope things get better for you, don't give up. I admire your strength. This board is great, the people are great, the info is awesome. Its just a wonderful support system going on here. I hope we can help somehow, at least in knowing you arent alone. *lots of hugs* And once again WELCOME!WELCOME!!!!
Glad you found us and (((((((((Rose))))))))))))
I hope this hug helps. I am sorry you are in so much pain. You will find the people are great here and anytime you need to vent, cry, even tell us good news we are here to listen. so welcome again and we hope to see you often. meme
Rose, I just have RA; but there are others here who deal with multiple diseases so they will understand your struggles for sure. I want to say we have one or two that have Lupus and RA; but I really am not sure of that.
You are more than welcome to be part of our group here never the less. We can all understand a great deal of what you face...and you'll find this group to be very kind and supportive no matter what your struggles are.
Welcome Rose; we're glad to have you. I am sorry however to hear you are having such a difficult time. I hope things ease up for you soon.
Lovie
Thank you so much for the warm welcome. It means so much to be with people who understand. I hope to get to know ya'll better, the group seems to be sooo supportive. MeMe I have a t-shirt that says the same thing as the bottom of your post lol. Great minds think alike lol.Theresa,Here's (not much) help. I have RA and MS. I inject Kineret for the RA and Copaxone for the MS. Both are biologics. They can be used at the same time. Your doc said Enbrel, Remicade and Humira were the only ones in their category? I assume he means biologics. He's forgotten Kineret. You might want to ask him to look into it. This is why--you said you had CNS damage. I can't take any of the other three RA biologics, as all three have been proven to affect the central nervous system and also exacerbate MS. Kineret does not! Now I don't know how it might affect your other problems, but certainly it's worth investigating...
Take care. Let us know how you're feeling. You're part of the family now.
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