Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Hello to you all, I'm new to the group but defnitely not new to RA. I was formally diagnosed in 1998 but had remitting bouts since in my 20's. I have inherited this disease it is all over my family tree. My daughter was also diagnosed when she was about 15. I have recently been diagnosed with possible heart blockage but since I also have a bleeding disorder (Von Willebrand's Disease) my cardiologist is not ready to do a catheterization. I was diagnosed with Valve Regurgitation in 2003ish. I was hoping I'd meet some other people with heart problems so I could talk it out. I have other conditions secondary to RA. I take Rituxan, Methotrexate, etc... This is a devastating disease and we all need support from others to get through it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Hi Michele: Welcome to our wonderful group of people. Sorry you also have RA. How are you doing with it? I know it is so difficult to try and have a life with RA. Such is this beast. Write whenever you can, and there is always someone here to answer your questions, and offer some advise. Take care and rest when you can. Wishing you pain free days ahead. Hugs, Barbara --- In , " Michele " <michelebrooks04@...> wrote: > > Hello, I wanted to introduce myself to your group. I have been dealing with RA since my 20's. I have taken just about all the TNF's and BRM's and a plethora of other meds. I have several conditions that are secondary to RA. I would love to meet new friends and share support and information with others who are going through this devastating disease. Again, nice to meet you all. Michele BB > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Hey Barbara, Thanks for the greeting! I take Rituxan and it is the first Biologic that has actually given me pain free moments in ten years!! It's rough at infusion time because you have to take 200 mgs of Prednisone and I no longer tolerate them well. But well worth it!! How long have you had RA? What meds are you currently on? And you are right it is hard to have a life with RA, at least not the life you were used to. My life has completely changed I am now on a forced journey of " stillness " and it does not come easy... TTYL, Michele BB > > > > Hello, I wanted to introduce myself to your group. I have been dealing > with RA since my 20's. I have taken just about all the TNF's and BRM's > and a plethora of other meds. I have several conditions that are > secondary to RA. I would love to meet new friends and share support and > information with others who are going through this devastating disease. > Again, nice to meet you all. Michele BB > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Welcome to the group, Michele. You'll find an awesome group of people here with loads of information. Please feel free to ask or share - we all benefit from each others' experiences. Its so reassuring to know we are not alone in this.....Doreen Hello, I wanted to introduce myself to your group. I have been dealing with RA since my 20's. I have taken just about all the TNF's and BRM's and a plethora of other meds. I have several conditions that are secondary to RA. I would love to meet new friends and share support and information with others who are going through this devastating disease. Again, nice to meet you all. Michele BB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 , OMG! You are the first person I have heard of that also takes Rituxin. I am actually going tomorrow to get my 6mth infusion... I also got alot of relief from Rituxin, only I find that it doesn't last the whole six months and I have been in terrible pain for the last 2mths as it has been wearing off. I would love to hear more about your experience with it, that is if you don't mind. I find that the infusion time takes so much out of me that I'm worthless for at least two days. I do not get the Pednisone ahead of time, and I haven't had any terrible side effects other then extreme exhaustion. Unfortunately, I have symptoms of RA and Lupus, so I'm very limited as to what meds I can take. Thanks for sharing Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Hey Bonnie, Awesome!! I don't know anyone else who takes Rituxan either. Mine also diminishes about the 4th month wonder why that is? I seem to have some kind of strange and bad reaction to it each infusion. And it completely drains me~ I feel depleted for at least a week. But then it's like the sky opens and I feel like a new person! It is the only BRM/ TNF that has worked for me in over ten years and I have tried them all!! How come you don't do the prednisone? The last reaction I had this strange sensitivity to the top of my head for several days it was very painful and weird. I don't know what that was about... I have many systemic systems as well just about every system in my body is affected in some way. I'd love to talk about this more!! Michele > > , > OMG! You are the first person I have heard of that also takes Rituxin. I am actually going tomorrow to get my 6mth infusion... I also got alot of relief from Rituxin, only I find that it doesn't last the whole six months and I have been in terrible pain for the last 2mths as it has been wearing off. > I would love to hear more about your experience with it, that is if you don't mind. I find that the infusion time takes so much out of me that I'm worthless for at least two days. I do not get the Pednisone ahead of time, and I haven't had any terrible side effects other then extreme exhaustion. Unfortunately, I have symptoms of RA and Lupus, so I'm very limited as to what meds I can take. > Thanks for sharing > Bonnie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2009 Report Share Posted June 10, 2009 I don't have time this morning (going for my infusion)to get all into this, but I would love to chat further... Please e-mail me privately at tiredtaz@.... I'll check tonight if I'm able, if not I'll definitely check tomorrow... I'm very excited to have found you! Bonnie > > > > , > > OMG! You are the first person I have heard of that also takes Rituxin. I am actually going tomorrow to get my 6mth infusion... I also got alot of relief from Rituxin, only I find that it doesn't last the whole six months and I have been in terrible pain for the last 2mths as it has been wearing off. > > I would love to hear more about your experience with it, that is if you don't mind. I find that the infusion time takes so much out of me that I'm worthless for at least two days. I do not get the Pednisone ahead of time, and I haven't had any terrible side effects other then extreme exhaustion. Unfortunately, I have symptoms of RA and Lupus, so I'm very limited as to what meds I can take. > > Thanks for sharing > > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
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