I read so much RA info that all mentions…
Short term, Long term, High dose, Low dose.
“They” never say or follow those terms with what each is considered to be. I think these are important and should be included ea time. So our warrior…
Can you influence such a chang in info? Thank You
Thank You for the helpful breakdown in pdf. I would like to post or share just one maybe on FB if you can make that an option? The most important point I believe in is… I try hard to explain that I have RA! Not rheumatoid arthritis. RA is sooo much more and it is diminished by the word arthiritis. I am tired of ppl saying excersize helps when a block walk puts me in bed for a week. I went thru yrs of being called a drug seeker. People saying everyone hurts when you reach a certain age so I accepted it as normal. I did not complain and when I did people did not understand. They cannot see that super active person they have always know me to be as anything else. Don’t know how I will feel day to day makes me undependable. Labels on and on. On the outside I am cheerful, smile etc lest I be considered negative.
On the inside I feel like a bitter old woman. Way beyond my yrs. Thank You for allowing me to vent. God knows husband is tired of hearing it and no one else wants to.
FYI – Found out friday Oct 7, 2013 Medicare basic plan b is no longer covering orencia infusion because it is available by injection. my rheumy told me she had been notified by medicare on this. medicare could not confirm or deny and referred me back to my provider to figure it out. it will definately not be covered in the new year.
I have just recently found your website and all I can say is WOW! Thank you so much for all you do. I don’t get alot of time for researching my own disease Feltys syndrome (I’m also 24/7 caregiver to my mom who has Alzheimers Disease) and have recently started my own blog about living with both, so I get how much time you have spent here. It is an amazing site and one I will be using regularly. Great job and thanks again for all your hard work. If I quote you I will definitely spell your name right and I’ve already posted a link. Kuudos!
Has anyone else got NODULES ? Yes Rheumatoid Nodules
I have on elbows and one on under forearm.
I have a 6″ tumour on lower back L4-L5.
Today I saw ortho surgeon who wants to cut it out. He thinks yes it could be a rheumatoid nodule, particularly as I sit all day in my wheelchair as I cannot walk.
Google search says try steroid injection/s first. Often Methotrexate can cause or make worse, Rheumatoid Nodules.
Surgery for me especially a 6″cut up my back/spine is dangerous for infections and healing.
I want to thank you for developing your site Kelly. I am new to the worl of RD and this site has been one of the most comprehensive sites I have come across. I am an egg head so when I was diagnosed in July 2015 my search began. I learned what all the tests were, what they meant, all current studies on autoimmunity and inflammatory conditions. All excellent information, however, your site adds the human elimant. What it is like from a patients perspective. Thank you for your dedication. I would like to add that one of the challenges I have not been able to address is counselling.
I am a triple A personality type. I have been working as a Financial Planner for 20 yrs and own a retail pet supply store. So twelve to fourteen hours days were the norm. In seven weeks, I have completely changed my diet, put my business up for sale, sold my book of business (with the option to work when I can). The most painful change was giving up my Pomeranian. I could not pick him up or do his grooming etc…With all that has happened in the last few weeks it has been the most difficult adjustment for me.
I am the doer in my life. I have three adult children and a husband trained to do nothing..I desperately need to talk to someone who knows about rheumatoid disease. Do you have any recommendations?
My spouse died March 9, 2017; a month later I had a TIA (I was dx when I was 45 with RA) and am NOW 71…I had carotid surgery and my right artery was PACKED with Plaque..due to inflammation [am assuming] as had not previously had high cholesterold etc.. and had it not been for loosing my vision for approx 40 min ..and my medical eye doc saying he would like for me to have an ultrasound done.. THANKFULLY!
I simply do NOT GET WHY the medical field doesn’t take RA seriously…the rheumatologist we have in my town, would NOT LISTEN that I cannot take various meds due to an autoimmune hepatitis issue. THANKFULLY, the cardiologists here did…just sharing that I HAD vaguely remembered seeing the huge amount of those with RA that had heart attacks, strokes etc.. and when I came back here to look it up..validated what I had read.
I cannot begin to tell you who keep this site up..how very grateful I AM for it. WHEN one is not near good doctors, this is what truly helps.
I’ve only now just read #10. I applaud your ability to write with such clarity. I was unable to use any of the usual medications for RA and I ended the Humira biologic when it kept me feeling ill all the time and caused a big red welt at the injection site. I have other medical conditions like COPD and that complicates everything. I didn’t develop RA until after I had a lobectomy followed by an undiagnosed lung infection for over 2 months. I believe that my RA developed from the trauma I and my body suffered during this time. I lost weight and went from 130 to 94 pounds and I was only 104 when I left the rehab after 6 weeks of IV antibiotic treatment. It took me a very long time to recover. I also developed a frozen shoulder during the time I was in the rehab center that went untreated because my admission was for only my lung problem This disconnect for people with RA who have a, or several, other major issues continues and it seems little effort is put into finding ways to treat us. My rheumatologist said I didn’t need to see him anymore after the Humira didn’t work. He said he didn’t have anything to offer me except the Reclast infusions I had been receiving. He said I could call if I had questions about anything. I moved my pain management to my PCP and I ask him any questions I may have. I got the impression that he was not well acquainted with “fibro fog” and seemed unsure it was real. Whenever I have been in the hospital or in an exam room with a nurse or doc I tend to offer some info on RA/RD. It is shocking to see how little they know. I think even the rheumatologists don’t know as much as they need to. I am thinking I will give your book to my PCP. Who knows if he will read it but he is a good doc so I think he might. So…if folks whose only big health problem is RA/RD is having a hard time getting the attention they deserve, you can only imagine how many others who have a variety of difficult conditions to contend with must feel now with the added variety that comes along with the RD. It it wasn’t for my support group and people like you I’d still be out in the cold and still in the dark. Thank you for your work. It is very appreciated.
Thank you so much for all this information and all you do to help our community of RD/AI Disease patients. I must say, since your 2012 “Written statement Arthritis Advisory Committee on Tofacitinib” there have been many deaths due to PE (Pulmonary Embolisms) and a lot more restrictions. Most doctors don’t keep up with their patients medical history of conditions and if patients aren’t proactive enough to read the side affects and interactions there is a huge risk to the patient. Example: I have a history of Angioedema & I have Diverticulosis, among many other issues, but if I wouldn’t be proactive in my health care and my doctor would of prescribe this I could end up in the hospital tubed, trached or worse.
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I read so much RA info that all mentions…
Short term, Long term, High dose, Low dose.
“They” never say or follow those terms with what each is considered to be. I think these are important and should be included ea time. So our warrior…
Can you influence such a chang in info? Thank You
http://www.express.co.uk/news/uk/376343/Single-jab-can-beat-arthritis
This just seen on Lucianne.com
which is a credible web site.
I am new to this board. Does anyone have info re this?
Thank You for the helpful breakdown in pdf. I would like to post or share just one maybe on FB if you can make that an option? The most important point I believe in is… I try hard to explain that I have RA! Not rheumatoid arthritis. RA is sooo much more and it is diminished by the word arthiritis. I am tired of ppl saying excersize helps when a block walk puts me in bed for a week. I went thru yrs of being called a drug seeker. People saying everyone hurts when you reach a certain age so I accepted it as normal. I did not complain and when I did people did not understand. They cannot see that super active person they have always know me to be as anything else. Don’t know how I will feel day to day makes me undependable. Labels on and on. On the outside I am cheerful, smile etc lest I be considered negative.
On the inside I feel like a bitter old woman. Way beyond my yrs. Thank You for allowing me to vent. God knows husband is tired of hearing it and no one else wants to.
I think the name should be changed to RAD.
FYI – Found out friday Oct 7, 2013 Medicare basic plan b is no longer covering orencia infusion because it is available by injection. my rheumy told me she had been notified by medicare on this. medicare could not confirm or deny and referred me back to my provider to figure it out. it will definately not be covered in the new year.
I have just recently found your website and all I can say is WOW! Thank you so much for all you do. I don’t get alot of time for researching my own disease Feltys syndrome (I’m also 24/7 caregiver to my mom who has Alzheimers Disease) and have recently started my own blog about living with both, so I get how much time you have spent here. It is an amazing site and one I will be using regularly. Great job and thanks again for all your hard work. If I quote you I will definitely spell your name right and I’ve already posted a link. Kuudos!
Has anyone else got NODULES ? Yes Rheumatoid Nodules
I have on elbows and one on under forearm.
I have a 6″ tumour on lower back L4-L5.
Today I saw ortho surgeon who wants to cut it out. He thinks yes it could be a rheumatoid nodule, particularly as I sit all day in my wheelchair as I cannot walk.
Google search says try steroid injection/s first. Often Methotrexate can cause or make worse, Rheumatoid Nodules.
Surgery for me especially a 6″cut up my back/spine is dangerous for infections and healing.
Anyone else ?
I want to thank you for developing your site Kelly. I am new to the worl of RD and this site has been one of the most comprehensive sites I have come across. I am an egg head so when I was diagnosed in July 2015 my search began. I learned what all the tests were, what they meant, all current studies on autoimmunity and inflammatory conditions. All excellent information, however, your site adds the human elimant. What it is like from a patients perspective. Thank you for your dedication. I would like to add that one of the challenges I have not been able to address is counselling.
I am a triple A personality type. I have been working as a Financial Planner for 20 yrs and own a retail pet supply store. So twelve to fourteen hours days were the norm. In seven weeks, I have completely changed my diet, put my business up for sale, sold my book of business (with the option to work when I can). The most painful change was giving up my Pomeranian. I could not pick him up or do his grooming etc…With all that has happened in the last few weeks it has been the most difficult adjustment for me.
I am the doer in my life. I have three adult children and a husband trained to do nothing..I desperately need to talk to someone who knows about rheumatoid disease. Do you have any recommendations?
My spouse died March 9, 2017; a month later I had a TIA (I was dx when I was 45 with RA) and am NOW 71…I had carotid surgery and my right artery was PACKED with Plaque..due to inflammation [am assuming] as had not previously had high cholesterold etc.. and had it not been for loosing my vision for approx 40 min ..and my medical eye doc saying he would like for me to have an ultrasound done.. THANKFULLY!
I simply do NOT GET WHY the medical field doesn’t take RA seriously…the rheumatologist we have in my town, would NOT LISTEN that I cannot take various meds due to an autoimmune hepatitis issue. THANKFULLY, the cardiologists here did…just sharing that I HAD vaguely remembered seeing the huge amount of those with RA that had heart attacks, strokes etc.. and when I came back here to look it up..validated what I had read.
I cannot begin to tell you who keep this site up..how very grateful I AM for it. WHEN one is not near good doctors, this is what truly helps.
Thank you Linda. And what a timely discussion. My book on rheumatoid disease was published yesterday! Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease.
I’ve only now just read #10. I applaud your ability to write with such clarity. I was unable to use any of the usual medications for RA and I ended the Humira biologic when it kept me feeling ill all the time and caused a big red welt at the injection site. I have other medical conditions like COPD and that complicates everything. I didn’t develop RA until after I had a lobectomy followed by an undiagnosed lung infection for over 2 months. I believe that my RA developed from the trauma I and my body suffered during this time. I lost weight and went from 130 to 94 pounds and I was only 104 when I left the rehab after 6 weeks of IV antibiotic treatment. It took me a very long time to recover. I also developed a frozen shoulder during the time I was in the rehab center that went untreated because my admission was for only my lung problem This disconnect for people with RA who have a, or several, other major issues continues and it seems little effort is put into finding ways to treat us. My rheumatologist said I didn’t need to see him anymore after the Humira didn’t work. He said he didn’t have anything to offer me except the Reclast infusions I had been receiving. He said I could call if I had questions about anything. I moved my pain management to my PCP and I ask him any questions I may have. I got the impression that he was not well acquainted with “fibro fog” and seemed unsure it was real. Whenever I have been in the hospital or in an exam room with a nurse or doc I tend to offer some info on RA/RD. It is shocking to see how little they know. I think even the rheumatologists don’t know as much as they need to. I am thinking I will give your book to my PCP. Who knows if he will read it but he is a good doc so I think he might. So…if folks whose only big health problem is RA/RD is having a hard time getting the attention they deserve, you can only imagine how many others who have a variety of difficult conditions to contend with must feel now with the added variety that comes along with the RD. It it wasn’t for my support group and people like you I’d still be out in the cold and still in the dark. Thank you for your work. It is very appreciated.
Thank you so much for all this information and all you do to help our community of RD/AI Disease patients. I must say, since your 2012 “Written statement Arthritis Advisory Committee on Tofacitinib” there have been many deaths due to PE (Pulmonary Embolisms) and a lot more restrictions. Most doctors don’t keep up with their patients medical history of conditions and if patients aren’t proactive enough to read the side affects and interactions there is a huge risk to the patient. Example: I have a history of Angioedema & I have Diverticulosis, among many other issues, but if I wouldn’t be proactive in my health care and my doctor would of prescribe this I could end up in the hospital tubed, trached or worse.