Email a copy of 'The Problem with Rheumatoid Arthritis Information: Why is RA so hard to study and cure?' to a friend
Loading ...
E-Mail 'The Problem with Rheumatoid Arthritis Information: Why is RA so hard to study and cure?' To A Friend
Loading ...
I believe a large part of the problem is that women are more susceptible to acquire this disease yet men usually get a more severe form of it, which as we know traditionally men are taken much more seriously when they have a health problem. Also, a woman’s symptoms of many diseases such as heart disease show totally different symptoms; therefore women were pretty much ignored for a long time as not being recognized that we even developed heart disease. So, in my generation, hysteria or nervous conditions or hypochondria were the usual diagnosis for ailments. It wasn’t until the last 20 years that doctors really paid attention to women’s issues, so they are lacking what I believe is the background of years of research necessary to truly understand how women’s physiology is so different to men. There are still dinosaurs in the male doctor thinking in this as we all have been exposed to some pretty asinine doctors who will tell you it’s all in your head. It was not that long ago that the medical community realized that women actually did experience cramping and inflammation during their menstrual cycles and this was an issue that was considered as a “hysteria or hypochondria” issue in women for 100 years. I do not test positive for any tests for this disease except that there is inflammation showing in my blood, so as a woman, I am not giving up but am becoming even more tenacious in my battle to get answers. The more attention drawn to this disease will be the best way to get more research done in order to find a cure or at least a better way of dealing with it, hopefully without having to take so many drugs that can harm you in other ways. So, yell loud, ladies and eventually, someone is gonna listen.
Michelle,
You may like this post about the history of hysterical diagnosis. Part 2 might make you mad though. It’s a true story. What you point out is definitely part of the problem. But, you’d be amazed at some stories I can tell about women doctors too. RA is like a sly devil. :tremble:
Kelly,
Informative post! I’ve also been reading about genetics and effectiveness of biological medications and am planning to dig deeper and write a post about it soon.
I’m so glad that even though my rheumy runs lots of blood tests, he always relies on symptoms and other data like xrays and MRIs. ESR is such a general test…it’s used for all sorts of diseases.
It is interesting that the general public does not tend to differentiate between differences in severity, symptoms, and effectiveness of treatments in most serious diseases including RA. I guess we want to reduce things to simplist of terms.
Andrew
If only a few small joints are inflamed, blood tests might not detect the inflammation. This makes it difficult for non-rheumatologists to see that there is inflammation. And serious inflammation that might destruct joints.
High elevation of rheumatoid factor and/or CCP-antibodies might predict erosive disease, but I also have seronegative patients, that have erosive and make that serious erosive (mutilating) disease.
Rheumatology can be easy, but you have to do every day, if not it gets complicated.
CU Lothar
Rheumatology is a complicated practice everyday. Only the bravest should attempt. O:-) Thank you, doctor for the thoughtful comments.
I have heard patients tell of every combination of test results with severe RA in many joints & obvious damage. I am sure that scientists are working to identify more antibodies & improve tests to measure RA. However, meanwhile I wish more docs did not trust them too heavily over what patients show / say.
As for the general practioners & the public, we must educate…
Kelly, what are you talking for your RA and is it helping?
Methotrexate & a Biologic, which was recently changed to Orencia. Orencia is administered by I V and is slow acting. Doc says to expect to feel better in 3 months. I’m so hoping their commercials are true. 😎
Is it working? I’ve written a lot about that on the blog. A couple of places are this post and this post.
The short answer is: yes and no. Times off of medicine show me how much the RA medicine helps me because I’m completely disabled again pretty quickly. However, with all the medicines the best I have ever been is about 50% of ability before this happened. :sidefrown:
Hi Kelly, I have a very recently developed theory on some RA remissions. First, let me tell you that I am not an RA’er, but have been exposed to it first hand all my life as my mother, now 76, was first diagnosed in her early 20’s and has suffered greatly and gracefully my entire life. I have watched her fingers curl; her joints swell to where I thought the skin would break open; a number of surgeries for artificial joints; etc.. I am now watching her suffer from something entirely different…….a severe staph infection, Bactermia or Sepsis? Anyway, what is very interesting to me is that her RA is NOT flaring at all (she is on a 20mg a day prednisone dose) even though she is unable to now take ANY true RA medications, and she was on many prior to this. And, her SED rate is better than it has ever been at 29 (I don’t know if it’s ever even been close to that low), her CRP is some worse.
Now, for my theory (which the doctors say is “highly unlikely” – they’ve said that about every one of my suggestions so far that have turned out to be right on & won’t even consider that I might be on to something):
I believe her over active immune system is trying to help fight the infection and is NOT attacking the joints, etc., because of the infection. I don’t know if my mother is going to be strong enough to live with the combination of RA & Staph long term, but am really curious to know if there is a correlation and if maybe, just maybe, kind of like a flu vaccine, if a live infection were introduced to the body of an RA patient AND it were something that could be controlled somewhat with antibiotics, could it help ease RA symptoms/damage because the RA is kept busy? Just a thought as I have been searching for someone to “think outside the box” just a little. Please let me know what your thoughts are.
It is probably too late for any of this to benefit my mother, but if it could help future RA’ers enjoy a less painful quality of life, I think it would be worth looking in to……..I just don’t know who I can suggest it to that might take it seriously enough to AT LEAST CONSIDER THE POSSIBILITY!
Thank you for your time.
Brenda Case
Hi Brenda. We have seen some patients whose RA is less active during infections, but not everyone’s immune system responds in the same way. I agree with you that it’s a clue that should be studied – that at least some patients seem to be better while the immune system is “busy” with an infection or virus. The immune system of someone with RA is “broken” and the patient is also more likely to die of infection, even without the risk of medications being added.
I agree with Brenda except that I believe it is the antibiotics that reduce the pain, not the infection itself. It is well known that antibiotics become less effective over time if abused. I would rather save the antibiotics as a life-saving tool if needed.
I’ve been in remission for 19 months now, ever since I was 37 weeks pregnant with my baby. My rheumy thinks its the breastfeeding hormones that are doing it. I’m not on a single med. I wish there was a way to study this! I also want to keep pumping once my toddler is done nursing and see how long I can prolong this!
Pingback: Optimism around RA! | Pollyanna Penguin's RA Blog