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Medical Forum / Diseases and Disorders / Arthritis / December 2005Rheumatoid ARthritis-After 10 years of pain and meds... I am better... ???
Hi, I have been inactive in this group for a long time but wanted to share something. Due to having sepsis in Feb 05, I went off Remicade. I had to have some surgery so I later quit taking Methetrexate as well. Right now I am on Prednisone 10 mg., an antibiotic, and finally Aleve. I am no longer tired all day long. Fortunately, I am no longer in very much pain. It may just be a remission but I haven't felt this good since before I had RA. I pretty much thought my life was over.... I asked my doctor if Remicade had made anyone else really tired and sleepy and he said no, but that it effects people differently. All I know is that I am finally enjoying the 4 to 5 hours of energy and being fully awake. Has this happened to anyone else? Hmmm... no one has any comments???? Thanks! Barbara Barbara - I think there must have been a delay in your post appearing. I check the board several times a day and just now is the first time it has appeared for me in google. In fact, there are a lot of posts this morning after only a few a day for the past few days. I'm actually just killing a few minutes while my hot packs heat up and I'm back to bed .... don't want to wake up too much. I'm glad you are feeling so much better. I've often felt better on antibiotic - what kind are you taking? There is so much controversry about why and how abx work. Maybe that has sommthing to do with it. I haven't taken Remicade so I can't really say much about it but a lady where I get my IVIG infusions swears that it made her worse and here ID thinks it damaged her immune system, in particularly her IGG is now low and even with monthly IVIG infusions it does not come up. I will have to ask her about fatigue next time I talk to her. It would make sense though because the best thing I get from my IVIG infusions is the lack of fatigue. Gotta get back to bed...microwave ringing. Keep us posted on how you are feeling. Diane W. Dear Barbara, This is the first time that I've seen your post. That's computers for you! I'm in my ninth year with RA and I feel the best that I have since being diagnosed. This disease is cyclic-sometimes it's better and sometimes it's worse. I'm thrilled that you're feeling better! Take care, Vickie B. Barbara, hi, it's me, Nanny. I don't recall your original post, but I'm a "newbie" in being diagnosed with RA - approx. 9 months. So, I don't have a lot of answers yet. However, ask me anything about Fibromyalgia and I can share tons, with my almost 30-year experience :-) Nanny > Barbara - I think there must have been a delay in your post appearing. > I check the board several times a day and just now is the first time it [quoted text clipped - 18 lines] > > Diane W. > Hmmm... no one has any comments???? > Thanks! > Barbara Hi Barbara, This is the first time I have seen your post and I want to welcome you to our little part of the internet. I started with RA when I was 38 and am now 65. I have been taking DMARDs since I was 45. Like you, they have worked well for me. No one would know that I have RA if I didn't tell them and I have never had any procedures done on any of my joints although I really thought about having some shoulder work done. About 10 years ago me aches and pains and problems were at their worst causing me to take early retirement. 3-4 years ago,,, I started Enbrel and life has been good since. We do have our ups and downs with more pain and less pain at periods. I hope you are doing well and tell us a little more about yourself. Harv >> Hmmm... no one has any comments???? >> Thanks! [quoted text clipped - 12 lines] >I hope you are doing well and tell us a little more about yourself. >Harv I was diagnosed about 8 years ago and have had my ups and downs. I progressed through most of the meds including Enbrel which worked well for a couple of years. Humira has helped but I had an infection that cause me to stop using it for 6 weeks and although I have been back on it for seven weeks it really hasn't kicked back in. Now I just started weekly Humira as well d as 20 mg weekly of Methotrexate, folic acid, and a couple of nsaids. My hands and shoulders are really giving me trouble now. As most of you know, a lot of the treatments are wait and see. Things are perpetually changing. What gets my goat is my wife recently found out a co-worker has RA and is onl;y on 20 mg of Methotrexate weekly feeling great. She can't understand why I take so much medication. I trust my doctors and have worked through all these combinations. I wish she could understand that we all have the same disease but it affects each of us differently./ Thumper I wish she could understand that we all have the > same disease but it affects each of us differently./ > Thumper If we had the answer to this question,,,,,, hhhhmmm,,, I have thought many times and wondered why,,,, 7-8 years of methx my main DMARD and it just stopped working and like you,,,, I was told to stop taking it a couple of times for this reason and that reason with it working less and less as far as control. Then it was on to Arava for a year. The good thing about all this is we have choices now and new things to try. Harv > I wish she could understand that we all have the >> same disease but it affects each of us differently./ [quoted text clipped - 7 lines] >this is we have choices now and new things to try. >Harv I know a woman who is approaching her 80's who has had RA since she was 12. All she took was Vioxx which reminds me. I should give her a call and see if she has found a suitable substitute. My doc has just started me on once a week Humira but I don't think it's going to work either. It took 3-4 months to kick in before and then I was off it for almost 2 months. Funny how your body likes to fool you. Thumper Thank you everyone for all your response. Harvey, I posted a bit back in 1997. I was married then and living in Plano. My new marriage broke up because he could not handle my having RA. I was the first in Dallas to take Enbrel when it came out for everyone. It gave me another 3 years or so, of relief but then quit working. After my divorce, I move back to my home town of Wichita Falls and worked another 2 years while on Remicade. It too helped me get through the day working but I also have Sacroilitis and have to have a lot of pain meds to deal with that. I went on disability finally about 4 years ago. It has been a horrible struggle financially but not having the stress of trying to do a full time job while battling this disease is great. In Feb, this year, while on Remicade I was rushed to the hopsital with a 104.8 fever. I had Sepsis. I was in Intensive Care for 4 days and in the Critical care for another 3 days. My blood pressure was hovering at 40 to 50 over 30?, for 3 days. I almost did not make it. I did notice after getting back on my feet that my energy was returning. But after taking the Remicade, it totally went away. For that reason and the risk of dying from infection/Sepsis, I decided to go off the Remicade and the methetrexate. My energy is so great now! I can do things now almost everyday for about 4 hours. If I do more than that, I spend the next day in bed. Before I was spending EVERY day in bed! I never thought I would feel any energy again. This has been a miracle for me and I just wondered if anyone else has noticed the fatique that Remicade to do to SOME people. Good to see your friendly face Harv. Barbara I just wondered if anyone else has noticed the fatique that Remicade to do to SOME people. Good to see your friendly face Harv. > Barbara You are going to say,,, awh,,, he is just saying that but I seem to remember the pain and suffering of having your partner give you up because of your having RA. We will never know how many people have lived through what you did. You will never know how many people your story helped to live with,,,, how shall we say it,,,,, shallow love,,,,, shallow compassion,,,,....... It is good to see you back. It is good to see the strong person from 1997 is doing well. If you seem to feel an arm around your shoulder with a hug,,,,,, it is OK,,,, not a ghost. Harv Hmm... I thought I replied a few weeks ago! Hav, your arm around my shoulder brought tears to my eyes. No one knows the loneliness that chronic illness can cause us, except those who have walked in our shoes. Thank you for that. It is interesting but after I went on Enbrel, my ex. wanted me back. Too late. I would never, ever, trust him again. I am still feeling energy every day. I love it! What a miracle. I just want to suggest to anyone that is on the heavy artillery and still feeling too much fatigue, that it could be the Remicade. My GP & RH. Doc. kept saying that it was my pain pills that were making me sleepy and tired. But I knew differently. We are each responsible for our own health. If something isn't working, don't give up and be sure to trust your own instincts. Have a pain free day... My wish for everyone. Hi Barbara! I think I may remember you some from '97, though I was mostly lurking in those days, being in temporary, semi-remission myself. I am so sorry to hear about the breakup of your marriage. These diseases can be so difficult on everyone around them. Your Remicade tale is scary and serves as a warning to all of us to watch the effects and side effects of our drugs. I can certainly understand why you'd want to stay off that combo of DMARDs now. Any chance that some of the newer ones such as Humira would work better for you? I have to admit, as one who's been prone to infections in the past, that I am less frightened of the meds that are injected weekly than of the longer lasting infusions such as Remicade. It's easier to quit them and get them out of your system in case of infection.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare "If you seem to feel an arm around your shoulder with a hug,,,,,, it is OK,,,, " Thank you Harv.... I truly needed and appreciate that. I am going to lay off the heavy amo unless my body goes back to being attacked by RA. Another caution to those of you on the TNF meds, if you are taking pain meds regularly, be care of upper respiratory infections. The pain meds can take away your natural need to cough. So by NOT coughing, the infection gets a worse hold on you with out your being aware of it. Trust me... you do NOT want to go through what I went through. Be blessed, BarbaraTX >> Hmmm... no one has any comments???? >> Thanks! [quoted text clipped - 12 lines] >I hope you are doing well and tell us a little more about yourself. >Harv Incidentally, If you want to see why my hands are so important to me, take a look at this link. http://www.fgmkt.net/stainedglassbyjaysmith/ I'm not trying to sell anything to you guys but this is my wholesale business I've been doing for over 20 years. I used to have accounts all over the country and even Europe and Japan but have had to cut back drastically to only a few of my long time accounts. Note that the 540 number is wrong. They say that they will have it fixed today. Thumper Beautiful work, Thumper. Can understand the hand problem. Gwen >>> Hmmm... no one has any comments???? >>> Thanks! [quoted text clipped - 26 lines] > fixed today. > Thumper |
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