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RT rawarrior Blog Post: 2 Reasons Monitoring Rheumatoid Arthritis Matters http://bit.ly/lONBUD
I loved the use of the ear infection. Everyone should be able to understand the process.
right Tanya, who would tell someone with any other illness process to give up trying to be well as possible?
I think your information is very helpful and wanted to thank you. I am also working with an aquatics therapist that has been helping me. can you please let me know what you think about the type of therapy I am currently receiving aquatic therapy
I have actually started a journal over the last two weeks where I document my symptoms, use of medications, and anything else ralated to my RA two to three times a day. Reading back now after finally having compiled enough days has been really interesting to me and I intend to email it to my rheumy a couple of days before my appt and bring in a copy next week. I also loved the ear infection use…. Totally makes sense!
Thanks again Kelly!!!!!
Thank you for all the information describing this disease.My doctor gave me a prescription for humira.It is so expensive.I had to pay 33% where the insurance paid the rest.I did get help from the health well foundation.They paid for 3 injections and I tried the Abbott patience assistance foundation and couldn’t get any help after giving them al the information they required.I wonder how many out there has had this problem.
I have found that my doctors don’t seem to be concerned with other autoimmune diseases and monitoring for that when symptoms arise. For example, I already have 2 autoimmune diseases, one is rare in general, but even more rate to be diagnosed at my age.
How do we handle this without sounding like hypochondriacs?
Katie, I do identify with you. I have had Primary Addison’s Disease for 42 years. It is a chronic, rare (1 in 100,000), autoimmune disease where the body shuts down the adrenal glands. The treatment for it is steroids. Since I’ve been on hydrocortisone for this disease for over 40 years, when I started complaining about joint and muscle problems, I was told by several doctors that it was just the long term use of cortisone. It took 4 years to finally get a diagnosis of RA. Unfortunately, when it was diagnosed, the RA is in the severe stage. There is no information for me to know how much extra adrenaline a non-Addisonian body would produce to handle the day-to-day demands of RA or how much extra adrenaline is needed when taking infusions or RA medication.
Thank you for adding this to the list. I’ve wondered if there were any others who shared a problem like mine. I’m sorry to hear that you are in the same category as I am……….
I am soooo saddened that in 2011 we have to have these discussions at all. Something is dramatically wrong in our medical communities, pharmacutical companies and FDA if by now we have to beg to be monitored, have numbers tweeked on drug studies to improve the marketability of a drug and an agency that in my humble opinion has become worthless. Sad is an understatement. It seems to me that the patient is the last one getting attention here in the US and I personally believe it is a numbers game…the almighty dollar that is! Sad indeed. Unfortunately they are playing with our lives. Great post!
And it’s not just patients, I really think it’s rheum patients. There is so little money, research, or attention for rheum in comparison to other serious diseases. Leading to little progress in understanding.
your right Kelly, I believe that many rheum patients feel well the docote knows best so why should question him. It is our duty to our bodies and life that we should research and be knowledgeable about our disease and treatments and question the doctor for clarity.
does everyone take biologics
No. I’ve been on Humira but it didn’t work. At the moment, I’m just on methotrexate.
With such shockingly low remission numbers, I’m wondering why my rheumy is so perturbed that I’m not responding “as expected.” At one visit, he says that axial involvement (spinal, or in my case sacroilliac) doesn’t always respond to meds. Another time he tells me that maybe the MTX isn’t working because my S-I is still hurting, even though it has helped my peripheral joints. I guess with no swelling and only a positive RF, he feels a bit in the dark. You and me both, doc. But even thought it’s irrational it sure makes me feel like a “bad patient” when my body doesn’t know it should be responding to meds the way he expects. 😉 Grateful, though, that he is willing to treat without the “magic” numbers in my blood work.
Whoops! That was supposed to be a separate post, not a reply to Debby. Loose nut on the computer . . .
whenever I read a comment like this, my jaw always drops. some folks were posting last week on Twitter about how their docs told them the same things – my doc said those things to me & made me feel like I’m the only one to not respond. Stayed on double dose of Humira 2.5 yrs waiting for it to work and doc kept saying “most people get better…”
On the swelling issue: do you know there are well over 300 comments on the swelling posts here? and I’ve read about 5 times that many via Facebook or email that reflect the same issues – doctors tell patients swelling is expected with disease activity, but patients know that swelling comes and goes – not always w/ other symptoms.
Like you said, at least you are getting treated. Some can’t get that. Best to you Kris.
I’ve always wondered why feet/ankles were ignored. For one, it takes extra time. For two, I guess the docs don’t want to deal with smelly, gross feet. Interesting how my docs responded to feet but I won’t go into that right now. But consider the following abstract and how it would fit into treating to target. Although another abstract I read recently said (in relation to guidelines on prescribing of dmards) that docs did not pick up on and change their prescribing habits after the issuance of the new guidelines.
http://www.ncbi.nlm.nih.gov/pubmed/21953347