Comments on: The Four Courses of Rheumatoid Arthritis, part 2 http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/ Bringing information & encouragement to fight RA Fri, 10 Feb 2012 20:28:38 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: SarahTabor http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-116420 SarahTabor Tue, 15 Nov 2011 17:29:48 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-116420 I have been fighting "something" for years. I have tried to tell my doctor I thought I have Rheumatoid Arthritis since I was 17 years old. Well the Fibromyalgia diagnosis came. Now my RF blood test has went from 21 to 22 in a year, so now it is that I possibly have RA. I have huge lumps on the top of my feet and I have red swollen areas of my ankle joints and the tops of my feet. The red swollen hot areas tend to hide when the doctor needs to see them and I have no clue why! The pain is always in my joints but they are not always red and hot. The pain is in both the left and right more prominent in the right. I am still and sore an wind up laying in bed and need help to get up after laying awake for two hours! I was told by the MD I needed to keep a "toilet pan" by my bed so I can slide off the bed and urinate so I do not destroy my bladder. The thing is ehem I can NOT move because I am so stiff and in pain. So a "toilet pan" by the bed is not going to help me if I can't move, right?! Oh and my entire life has been on MD or another saying "THIS IS ALL IN YOUR HEAD AND WHEN YOU ACCEPT THIS FACT, YOU WILL HAVE FULL RELIEF!" The only thing is my psychiatrist says its in my body not my head! Oh yes I went to the shrink with the idea he could fix my thinking, when he seen the swelling in my legs he called my regular MD and requested I be allowed a second opinion. Hence the "over half of my life" with no treatment for the symptoms and my hands are starting to look as if they are "deformed" and my ankles are the same! My knee caps slide off at an angle and have "major damage" according to the X-Ray tech. Hmm I have to ask, is it ones mind if there are visible signs of something going on? The lumps that are red and hot on my feet can physically be felt and seen. Sorry if this is not the right place for this! I find this article very helpful as it appears to be I am either in the course 3 or 4. Sarah I have been fighting “something” for years. I have tried to tell my doctor I thought I have Rheumatoid Arthritis since I was 17 years old. Well the Fibromyalgia diagnosis came. Now my RF blood test has went from 21 to 22 in a year, so now it is that I possibly have RA. I have huge lumps on the top of my feet and I have red swollen areas of my ankle joints and the tops of my feet. The red swollen hot areas tend to hide when the doctor needs to see them and I have no clue why! The pain is always in my joints but they are not always red and hot. The pain is in both the left and right more prominent in the right. I am still and sore an wind up laying in bed and need help to get up after laying awake for two hours! I was told by the MD I needed to keep a “toilet pan” by my bed so I can slide off the bed and urinate so I do not destroy my bladder. The thing is ehem I can NOT move because I am so stiff and in pain. So a “toilet pan” by the bed is not going to help me if I can’t move, right?! Oh and my entire life has been on MD or another saying “THIS IS ALL IN YOUR HEAD AND WHEN YOU ACCEPT THIS FACT, YOU WILL HAVE FULL RELIEF!” The only thing is my psychiatrist says its in my body not my head! Oh yes I went to the shrink with the idea he could fix my thinking, when he seen the swelling in my legs he called my regular MD and requested I be allowed a second opinion. Hence the “over half of my life” with no treatment for the symptoms and my hands are starting to look as if they are “deformed” and my ankles are the same! My knee caps slide off at an angle and have “major damage” according to the X-Ray tech. Hmm I have to ask, is it ones mind if there are visible signs of something going on? The lumps that are red and hot on my feet can physically be felt and seen.

Sorry if this is not the right place for this!

I find this article very helpful as it appears to be I am either in the course 3 or 4.

Sarah

]]> By: Kelly Young http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-95723 Kelly Young Thu, 29 Sep 2011 14:45:37 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-95723 good way to describe it! I have all kinds of funny ideas for a video if we could use that song! good way to describe it! I have all kinds of funny ideas for a video if we could use that song!

]]> By: Andrea http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-95720 Andrea Thu, 29 Sep 2011 14:25:42 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-95720 Thanks so much for the encouraging reply :). I've been thinking about why I'm feeling this anxiety about it all, because this is really nothing new. I think what did it was the addition of the Prednisone. I've been on the same course of treatment for about the last 4 years, and the only things that have changed are my Methotrexate dosage and switching from Enbrel to Humira. It's almost like when the Dr. added the Prednisone, 'Another One Bites the Dust' started playing in my head. It was a little discouraging. But.. everything will be ok, and I am not a quitter! Thanks again! Thanks so much for the encouraging reply :) . I’ve been thinking about why I’m feeling this anxiety about it all, because this is really nothing new. I think what did it was the addition of the Prednisone. I’ve been on the same course of treatment for about the last 4 years, and the only things that have changed are my Methotrexate dosage and switching from Enbrel to Humira. It’s almost like when the Dr. added the Prednisone, ‘Another One Bites the Dust’ started playing in my head. It was a little discouraging. But.. everything will be ok, and I am not a quitter! Thanks again!

]]> By: Kelly Young http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-95416 Kelly Young Wed, 28 Sep 2011 14:00:01 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-95416 Hi Andrea, keep reading. There are about 9 options for injections /or infusions now and several dmards than can be tried in combination. It is hard to keep trying new ones looking for relief, but we are glad we have something to try too. Many patients (a majority) do use prednisone, at least sometimes to try to get through. Don't give up! Hi Andrea, keep reading. There are about 9 options for injections /or infusions now and several dmards than can be tried in combination. It is hard to keep trying new ones looking for relief, but we are glad we have something to try too. Many patients (a majority) do use prednisone, at least sometimes to try to get through. Don’t give up!

]]> By: Andrea http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-95214 Andrea Tue, 27 Sep 2011 20:14:20 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-95214 Thanks for this site, it has really answered many of my questions even though I've had the RA diagnosis for over 10 years now. When I was first diagnosed, it hit me like a ton of bricks. I thought of everything that Erin is thinking of, and after about a year I kind of settled into it and came to terms that this is just a part of my life. It doesn't define who I am. I can be or do anything I want, sometimes just modified a little. For the most part, these days it doesn't really even cross my mind. I wake up stiff, get my shower, take my meds and I'm off. I really never think about it for the rest of the day unless my pain is up. Ever since my last visit with the rheumatologist though, I have been thinking more and more. He prescribed prednisone for the days when nothing else helps. The more I researched, the more I realized that I could be getting to the bottom of the barrel, treatment wise. I have been on just about every NSAID in existence, plaquenil, methotrexate, enbrel, and a lengthy list of others. My current treatment is mobic, methotrexate, humira, prilosec (for the acid reflux caused by all the nsaids), and now the sporadic prednisone. Everything I'm finding says that the last thing on the list are the Rituxan/Orencia/Kineret infusions.. which is where I'll be when this current treatment has run its course. To be honest, it really scares me. I am 30. I have been successful in life so far.. married, 2 step-children, bought a home, car, full time job, going back to school currently... So, I guess.. I'm kinda at that point again, just like I felt in the beginning. I can tell the disease has gotten worse. My fingers are progressively going crooked, toes are crooked already. I would really like to know how long others have lasted before jumping onto the Rituxan/Orencia/Kineret? I am really afraid that by the time I'm 50, there will be nothing left other than pain management. Thanks for this site, it has really answered many of my questions even though I’ve had the RA diagnosis for over 10 years now.
When I was first diagnosed, it hit me like a ton of bricks. I thought of everything that Erin is thinking of, and after about a year I kind of settled into it and came to terms that this is just a part of my life. It doesn’t define who I am. I can be or do anything I want, sometimes just modified a little. For the most part, these days it doesn’t really even cross my mind. I wake up stiff, get my shower, take my meds and I’m off. I really never think about it for the rest of the day unless my pain is up.
Ever since my last visit with the rheumatologist though, I have been thinking more and more. He prescribed prednisone for the days when nothing else helps. The more I researched, the more I realized that I could be getting to the bottom of the barrel, treatment wise. I have been on just about every NSAID in existence, plaquenil, methotrexate, enbrel, and a lengthy list of others. My current treatment is mobic, methotrexate, humira, prilosec (for the acid reflux caused by all the nsaids), and now the sporadic prednisone. Everything I’m finding says that the last thing on the list are the Rituxan/Orencia/Kineret infusions.. which is where I’ll be when this current treatment has run its course.
To be honest, it really scares me. I am 30. I have been successful in life so far.. married, 2 step-children, bought a home, car, full time job, going back to school currently… So, I guess.. I’m kinda at that point again, just like I felt in the beginning. I can tell the disease has gotten worse. My fingers are progressively going crooked, toes are crooked already.
I would really like to know how long others have lasted before jumping onto the Rituxan/Orencia/Kineret? I am really afraid that by the time I’m 50, there will be nothing left other than pain management.

]]> By: Lynn smith http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-76567 Lynn smith Fri, 15 Jul 2011 23:30:15 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-76567 I am on a low dose of plaquinil and feeling better but not on remission . Does anyone know if taking a higher dose would help to bring on remission? Thanks. I am on a low dose of plaquinil and feeling better but not on remission . Does anyone know if taking a higher dose would help to bring on remission? Thanks.

]]> By: Marilyn http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-66564 Marilyn Wed, 11 May 2011 20:52:44 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-66564 Erin, you are fortunate to have found this site. The support of wonderful people is so valuable. Good luck to you! Erin, you are fortunate to have found this site. The support of wonderful people is so valuable. Good luck to you!

]]> By: Marilyn http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-66562 Marilyn Wed, 11 May 2011 20:50:00 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-66562 Kelly, I gave up the home of my dreams, which I designed myself, because of stairs and its size. I could no longer keep up with the cleaning and maintenence of such a large home. I designed the next one with my daughter; single storey ranch style, and quit a job I had for 15 years which required being on my feet up to 12 hours, and sometimes more. In spite of the constant pain I was living with, I was not diagnosed until 9 months later when I was referred to a rheumy who said I had fibrfomyalgia. 7 years later, an MRI helped diagnose the damage from RA, and it was decided I have both. I am still waiting for treatmebnt of the RA after we try Lyrica for the FM. Because any kind of diagnosis for a cause of the pain I was having did not come until 9 months after I left my job, I did not get disability; FM was not being recognized by the insurance companies yet anyway.I'm lucky to have coverage through my husband. Kelly, I gave up the home of my dreams, which I designed myself, because of stairs and its size. I could no longer keep up with the cleaning and maintenence of such a large home.
I designed the next one with my daughter; single storey ranch style, and quit a job I had for 15 years which required being on my feet up to 12 hours, and sometimes more.
In spite of the constant pain I was living with, I was not diagnosed until 9 months later when I was referred to a rheumy who said I had fibrfomyalgia. 7 years later, an MRI helped diagnose the damage from RA, and it was decided I have both. I am still waiting for treatmebnt of the RA after we try Lyrica for the FM. Because any kind of diagnosis for a cause of the pain I was having did not come until 9 months after I left my job, I did not get disability; FM was not being recognized by the insurance companies yet anyway.I’m lucky to have coverage through my husband.

]]> By: Nikki http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-66490 Nikki Wed, 11 May 2011 14:41:24 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-66490 Wow! The 4 courses of RA is interesting. I am between a 3 and 4. My pain never goes away. It just feels worse some days. These articles were very helpful...thanks!!! Wow! The 4 courses of RA is interesting. I am between a 3 and 4. My pain never goes away. It just feels worse some days. These articles were very helpful…thanks!!!

]]> By: Julie http://rawarrior.com/four-courses-of-rheumatoid-arthritis-part-2/comment-page-1/#comment-66285 Julie Tue, 10 May 2011 05:20:12 +0000 http://rawarrior.com/the-four-courses-of-rheumatoid-arthritis-part-2/#comment-66285 Erin, I agree with Kelly. Everyone's RA is different, and it may be that you will only be mildly affected. Its hard to predict how your disease course will run, even from day-to-day. I have had RA for close to 20 years , and I was able to finish my bachelors degree in nursing, and also have a family. My sons are now almost 29, and 21. My disease has run a strange course, but it was milder in the beginning, and then got more aggressive. But like I said, we are all different. Its been a journey to learn how to manage my disease. I try to take each day one at a time.I hope you find it encouraging that there are now , more than ever, a greater number of medications and research and knowledge, to fight the disease. Also, finding RAWarrior , and its support from other members , has helped me to feel understood, and find support from other RAers. Good luck as you start your journey, Erin! Erin, I agree with Kelly. Everyone’s RA is different, and it may be that you will only be mildly affected. Its hard to predict how your disease course will run, even from day-to-day.

I have had RA for close to 20 years , and I was able to finish my bachelors degree in nursing, and also have a family. My sons are now almost 29, and 21. My disease has run a strange course, but it was milder in the beginning, and then got more aggressive. But like I said, we are all different.

Its been a journey to learn how to manage my disease. I try to take each day one at a time.I hope you find it encouraging that there are now , more than ever, a greater number of medications and research and knowledge, to fight the disease. Also, finding RAWarrior , and its support from other members , has helped me to feel understood, and find support from other RAers.

Good luck as you start your journey, Erin!

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