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Wow!
Hollybgroovin
Monday, March 17, 2008 at 04:40 PMre: Wow!
Sharte
Monday, March 17, 2008 at 05:02 PMThank you so much for your letter. I actually am from Canada and every RA class I take or sitting in my RA dr office everyone is over 70 I am sure. Its kinda cute , but also sad, at the courses little 80 year old women discussing their RA saying "I just cant do what I used to". Its cute, I feel for them, but I cant do what I used to and I was only 34 in the classes. I feel most sorry for my kids, as a single mom(of 3 years now) as he works away, it just feel apart. But on a daily basis my kids come home and know where to find me, in bed. Makes me sad thats not how I want to be remembered. Oh well. What are you gonna do. I have denied needles till this week. My RA is getting worse and she wants me start Methogtreaxte, then switch over to Embrel in 12 weeks. Thats how it works in Canada you must try the cheaper one, if it doesnt work then you switch to the more costly. I live in Alberta, my mom just sent me a copy of a paper that the province to the East, Saskatchewan(I moved from there to here in 1996)is now giving Embrel and I beilve Humaria for free under their drug plan act provincially for those who need it. Our Province there isshan a charge not sure what the prices are and how much they will cover yet well have to see. Anyway I am scared as hell to take them anyway. I feel if your disease dosent kill you your meds eventually will, actually was also a quote to me by my GP.Its a big step to take meds that dont have a long term effect study. Look at viox, it was a wonder drug, till people dropped from heart attacks. I am scared. And I am never scared. Guess well see if I can get up the nerve to start the methotrexate. I just have so many fears, hair loss, nasuea, is it worth it???Tell me your thoughts. Have you had methotrexate?Thanks and good luck...
re: re: Wow!
Hollybgroovin
Monday, March 17, 2008 at 05:47 PMMethotrexate is definitely scary! I have taken it once a week for three years now. I now take 25mg one day a week in pill form. I have experienced the hair loss although that doesn't effect me anymore. I do however still have nausea, weekness, and dizziness. On the upside it helps tremendously, and my rheumatologists says I will continue to take it when I start my Orencia. But now instead of having 7 bad days of severe pain. I have mostly 3-4 bad days with the side effects of the methotrexate. It doesn't make the pain go away, but really does help. I hope it works well for you. It does take a while to get used to though, as the side effects can be a little harsh for some. But try to give it awhile, I think it started really helping after taking it for about a month. I have a lot of sinus infections while I am on it, but I guess that's the price you pay huh? I am 28 and have 2 kids, a 5 year old, and an 8 year old. They are wonderful and understand I am sick, especially since they have never really known me any other way. Please keep us updated. Also I am the youngest person my rheumatologist sees in his office so I can completely understand sitting next to the older woman and their RA conversations. They all look at me like they don't understand why I am there. Oh well, maybe I will be able to have an RA conversation with them someday if I get up the nerve :) Best wishes!re: re: Wow!
Joyski
Sunday, March 23, 2008 at 10:34 AMHi Sharte, I took methotrexate for the first few months and I did not have any negative side effects. But I stopped because i want to get pregnant. -
livin' with RA
CyndiLou
Monday, March 17, 2008 at 07:39 PMWow!!
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livin' with RA
CyndiLou
Monday, March 17, 2008 at 07:52 PMOkay....let's try this again. WOW!! What a testimony. I have had RA all my life so I know about being the"BABY" in the dr.'s office. It's so nice to finally connect with other younger RA suferers. We should start a club! Methotrexate and plaquinil didn't work for me. The only thing that's worked is prednisone but it came at a cost for me....lots of late onset side effects. I've been on it for 25 years and now I'm going to try Enbrel so I can get off the pred. I didn't have any side effects from pred until about 8 years ago. Now I have the weight gain, bone loss, bad immune system and Cushings disease. It was a great "love affair" while it lasted! I hope and pray that this new treatment works for you and the side effects are minimal. Methotrexate worked great for my nieces and I've also heard great things about the biologics. Keep an open mind and do lots of research. good luck and God bless. -
Enbrel and Humira
Rhonda Doss
Friday, March 21, 2008 at 09:33 PMHello Sharte, I was just reading your story and I have lived with RA for 10 years and Im only 35 years old.. I have taken two different TNF drugs, Enbrel and Humira. I started off taking methotrexate and planquenil, they did very little for me and then I changed Dr.'s and he suggested that I try one of the new TNF drugs so I did. I started taking Enbrel about 6 years ago and felt wonderful for about 5 years and than about 6 months ago the pain was back again so I just started taking Humira about 3 months ago and still do not feel near as good as when I first started on Enbrel. I have not had any side effects that I can see right now but I look it as I would rather enjoy the years that I have now when my kids are young and pray that they come up with a cure for my future..The part about giving my self shots , it's not the easiest thing to do but the benefits of it pay off. I hope this has helped you some..
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Life with RA
Joyski
Sunday, March 23, 2008 at 10:31 AMHi Sharte, I'm also 39 yrs. old and have RA for 3 years. I know what you are feeling. We just have to accept it and live with it. Yes, people around us do not know what an RA is and always mistakes it with osteoarthritis. I have stopped explaining, and stopped telling people why, how, what, when....I just live with it cause people won't care. Its scary but what else can we do? For the people who care, those who are trying to find a cure, I pray for you. -
RA mexotrexate & sulfasalazine
Supersoy
Friday, October 24, 2008 at 11:39 PMI was diagnosed with RA April 2008, I am 54 years old. I now know I had RA many many years ago, I think in my early twenties. I have rhuematoid nodules (on my elbows, and feet) have had these for many many years, they were just never diagnosed as such. I also was told I had burnout about 8 years ago, working a full time job, doing university at night, single parent, exhausted most of the time. I finally changed doctors. I am lucky I have a good rhuematologist now. I have had no negative side effects from this medication, and I do believe the benefits outweigh the risks. My rhuemy says my RA is moderate which is a 3 on a scale of 1-6. From what I have read, I think mexotrexate is the same as methotrexate, is this correct?
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Wow, you have been through so much on your journey. And you are right when you say no one understands because they can't see your pain. I couldn't have described that better! Even others with RA can't fully understand your pain, because everyone is different. But I can say I identify with you. My story played out quite a bit like yours with the diagnosis and having to admit to myself that I could no longer work, even though I tried so hard for quite awhile. When I try to explain my pain to my friends and family I tell them that it felt like every bone and joint in my body was broken. That is exactly how it feels to me. I often tell people that it seems like RA only effects the strongest ones, and that's how it sounds in your case as well. It's almost like it's lifes way of forcing us "Superwomen and Supermen" to slow down. I understand a little bit on how you feel about the biologics. You have to be able to have some control in your life especially after RA has taken control of so much as it is. I have attached some links on the studies of biologics. I hope this helps. Please don't think I am trying to push you into biologics, as I completely understand your position on them.
http://www.healthcentral.com/rheumatoid-arthritis/c/53/1832/orencia/
This link is for Orencia, which has less side effects than most of the biologics
http://www.enbrel.com/ra/clinical-experience.jsp
This site tells about the long-term experience of Enbrel
If you would like me to do further research perhaps on humira or remicade, let me know and I can get you some sites on that research as well.
Keep your head up, and please know that we are all here for you whenever you have questions, need advice, or just plain need to gripe. Good luck, and best wishes!