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Great Blog Kelly and thanks for providing a useful patient perspective on my (light hearted) assertion that rheumatology is cool and sexy.
It was an attempt to perhaps reset the balance on the negative perception that some patients / medical specialists have of our craft that triggered the blog. I don’t want to overstate the successes we have but the specialty has come a long way from the times of Hensch and steroids. Rheumatologists and their patients do their very best to manage difficult and challenging diseases.
The figures you quote are mainly for single treatment interventions and in my experience RA patients who fail one treatment will often settle on subsequent treatment or series of treatments. I tend to be very postive and upbeat regarding prognosis for most RA patient starting treatment as most will do well (not just in my hands).
Although success is the ideal goal in any process, the rheumatologist also plays an important supportive role in patients who do not have good outcomes.
Keep up the good work.
Thank you, Ronan. First, I hope you realize my humor – do you know the expression “tongue in cheek”? I don’t know how much of this blog you’ve read, but I frequently write in this way. So, I hope you realize that I liked your post and your assertion! I love leather jackets… I even like the idea of the pr campaign. As a patient, I also want the ACR and everyone else to see that success is what’s appealing to the world and what will get rheumatology back the respect it is deserved – success and what I already said along with Dr. Adams about getting the nomenclature fixed.
Second, I stand by the stats as the best of the best (methotrexate with a biologic in a clinical trial with a Hawthorne effect or whatever extra benefit there is to superior treatment). The links in the post are to other places where the data is supported – the statistics are from a chart from Wiley I believe that is a complilation of numerous Biologics trials with methotrexate (see links in post). These stats are what is supported by most studies over the last several years, although I’m aware that there are certain few centers out there which are claiming much higher success rates. I’ve read some discussion about why that’s the case and it has been the topic of much of my study over the last 2.5 years.
I’m aware of the tension between these claims and I think it’s extremely important to make known the facts of what patients do experience, as it has been demonstrated. We’ve prepared a poster/handout for ACR with data / resources to discuss this further.
Quick examples off the top of my head…
Some companies claim they can achieve 50% remission in trials, while large patient surveys find the number at 6% such as this one by Wolfe; a very large study by Dr Strand of daily pain with RA showed the daily presence, persistence, and pervasiveness of that pain in spite of disease treatment and requests for pain relief from rheumatology care (this study also is supported by surveys we’ve conducted in our own community).
I’m very appreciative of your reading this post and hope you’ll read more of what’s here. I look forward to future discussions that will benefit patients and rheumatology.
I somehow lost the last part of my reply. ?? It was about optimism – most of the large amount of mail I receive states thankfulness for the perspective of optimism on this blog. It was a life-altering experience to meet thousands of other RA pateints and see that they too are usually optimistic, patient, and compassionate. http://www.rawarrior.com/rheumatoid-arthritis-breaks-your-heart/
One piece of advice I frequently give to patients is to expect the best – we try to help them through fear of medications for example – or hold their hands as they get the news that knocks them down – about having RA – you can see here where just this week I was making this point about expecting the best. http://www.rawarrior.com/video-blog-two-essentials-with-a-rheumatoid-arthritis-diagnosis/
So, my focus on presenting real facts about RA is not with a “negative perception” – we are as you say “very positive and upbeat” also. I only wish this were translated into treatment success for more of us. I do not think any blame should be placed on patients for treatment failures. One day, we’ll have a different view of these treatments in historical perspective – as we do now when we read that Mayo Clinic history of rheumatology page.
Good post, Kelly..
You have been doing a fabulous job for educating the RAers/ encouraging them & bursting the myths that surround RA/ methotrexate.
If one looks at the results, we do not provide the type of results/ success a surgeon/ cardiologist is able to provide. The pain of appedicitis settles dramatically after surgery. We cannot provide that kind of relief given the chronic nature of RA.
Rheumatology has not attracted many talented medical professionals because of this ‘poor response’ fact. Hence, as a brach it has probably not as developed/ grown as cardiology.
Wr are on a learning curve & the trials/ doctor- patient initiatives will take us even further.
We cannot generalise the data from trials. Trial population do not reflect the total RAer population given their fixed inclusion criteria. Many of the biologics trials have only included patients who have not responded to DMARDs. In that case, the data gets skewed. Recently, I had to screen 51 RAers & could only include 24 of them for a trial. Also inmportant is the fact that not all trials include early RAers.
We already have trials that have started showing drug free remission in many patients. Remission has been accepted as a goal only recently & the importance of early diagnosis & DMARD institution has been accepted.
As Rheumatologists, most of us have observed that the prognosis of patients over the last few years has improved remarkably. The number of RAers with persistent disease activity/ new deformities/ requiring knee replacement surgery has gone down over the last few years.
All in all, Rheumatology as a branch is on a learning curve. A lot needs to be known/ understood/ practised. I’m sure results will continue to improve in the days to come.
Rheumatology is definitely sexy & I strongly believe in conquest over arthritis. I wish more & more professional join the branch so that all the patients are taken care of.
We do not see your level of success here at all and I have been wondering whether it is due to your treating more early or aggressive or to difference in gene pool.
The drug trials in this country are usually based on a population who are easy to respond to the biologicals in a measurable way. The criteria are strict and patients usually have to be naive to most of the biologicals. For example, I could not qualify for various trials due to the other biologics I had already tried. The criteria are also troubling to us because the same success seen in the trials is not seen in the general population. A large percentage (~40%) of the population has a “normal” crp result for example. However, trials require a that a person be able to produce high crp so that the crp can then be lowered by the drug to “prove” response. This is only one example, but the problem is that the population in the clinical trials is more responsive to the treatments – there is the Hawthorne effect as mentioned in the link by Wolfe and there are other problems with the data. One important problem is that in the real patient population, we see that the drugs work for a short time – oftne only a few weeks or months and then stop working. However, the trials that are limited to 6 months or 1 year cannot measure this. It is recorded as a statiscial success, but as Wolfe states in that article, the success usually “wears” off due to various reasons. We now know that a large number of our patients become immune to the treatments and each treatment is less likely to work because of the ways the immune system adapts.
It is a puzzle with many components. I think the most important thing that could be done to improve clinical trials or treatment generally would be to include more patient input in the process.
I forgot to say – – as always how much your participation in discussion is valued by me and other patients. Thank you.
Great article – beautiful picture of Kelly! you go girl- I just want to comment what I have noticed is a lack in the medical community for the different Dr’s working together when they have a Rheum patient. My Rheum Dr and dermo Dr are good but cardio and internal med- not so. they do their own thing and your off. So question is if CV is such a big factor in the health of the rheum patient why are cardiologists not more in the loop –
thank you for all you are doing –
Great question – they dont know. Even many rheumatologists don’t know. For example, we listened to one cardiologist who has been doing RA research now 2 years explain that prior to this study, he did not even know about the effect of rheumatoid on the heart. He’s a good doc. He just didn’t know. Many important things about RA are not known by doctors generally or so-called facts are “wrong.” We have plans to address all of these things through the new patient foundation, of course.
Thanks for commenting on the photo – I did photoshop it to imitate the one on the sonosite.com site where the video came from. We had just watched the commercial and seen a print ad & it struck us as humorous how far they went to glamorize the sonogram machine. 😉
I was just going to stop reading these blogs as they are just too depressing until I read the response from the first doctor, which actually gives hope! As a mother with a 22-year-old beautiful daughter diagnosed last spring, I am like a sponge trying to absorb all the info I can and unfortunately most of what I read on blogs, FB pages, etc. is all negative. If I were newly diagnosed or thinking of starting a biologic and read all this negativity, even though it is “tongue in cheek” I would be crushed and as a parent there is NOTHING as heart wrenching a your child ill, NOTHING. Frequently people scoff at the Enbrel ads, wanting to smash the TV, finding them humorous “cuz that never happens”. Well I am telling you it does happen and the more people I meet in my small state of North Dakota, the more I believe this. I would say 90% of the women I have talked to who have RA are doing GREAT. I find it a little odd the six women I know in my small town are all doing great on methotrexate, biologics, or one or the other but by your accounts rarely does anyone do well. By reading most of these posts it seems rarely does anyone get their life back but these women I know are living well despite their RA. Lacey’s rheumatologist, who is also a professor at the U of M told me to STAY OFF these boards as usually just negativity is blogged and that is surely what I am finding. Often reference is made to the heart disease and dying from RA, which as a parent is horrifying to read. Why not focus on the positives more often? Give people hope that they are not wasting their time taking these scary harmful drugs. Sometimes it seems like people don’t want to share they are feeling good and the meds are working and this is a mystery to me.
I just checked. Fifteen pages here out of almost 600 discuss the heart disease of RA. The purpose of this blog is 3-fold – one part is to raise awareness that will improve our outcomes. I’m constantly asked why doctors or the public don’t know that RA affects the body other than joints – – – The answer is that this awareness work that’s being done here on this site has not been done before. One reason it’s needed is to increase funding for research which will extend our lives.
About one in every 1,000 emails that I get says they feel I’m being negative here. Everyone has a right to his opinion of course. But it’s RA itself that’s negative. Telling the truth about that just makes me a messanger of a difficult message. I’m a mother of five and my children have been critically ill before, so I know what you mean about having ill children. But my own mother reads this blog daily and responded to this particular one in the same way she often does, positively. So, perhaps it’s personal taste.
Melissa–I understand the need for hope and optimism when you or someone you love is diagnosed with a chronic illness. I was diagnosed when I was 12 years old–35 years ago. And, honestly, until I found Kelly’s blog, I wasn’t aware of all of the complications that can arise as part of RA. I heartily believe that knowledge=power. We have to be our own health advocates, and being aware of all of the complexities of the disease helps us in our own treatment-related decisions and ultimately in our treatment success. In order to move the field forward, we must identify the areas that need improvement; examine what is not working so that we can figure out ways to make it work. Kelly’s blog helps to shine a light on the things within rheumatology that need improvement. We, the patients, deserve to have better outcomes than e.g., 20% improvement. Yes, many do live well with RA, but there is always “rheum” for improvement! I understand that not everyone is up to facing these facts, and that’s ok. But, for those of us who want to fight for better outcomes, Kelly’s blog is not depressing, it’s empowering.
Barbara Cloues, Ph.D.
Perhaps rather than the word depressing I should have used “pessimism”…..”to see, anticipate, or EMPHASIZE only bad or undesirable outcomes.” Maybe since I am not a sufferer myself, although I have begged to the heavens to let me deal with this rather than my daughter, I am missing something here. If I had cancer I would not want to repeatedly be reminded of the statistics of my chances of developing secondary complications or possibly death. I see you have a Ph.D. so are probably more qualified than I to broach on this subject but as a mother I would rather see more optimism out there. I might add my daughter is doing great despite having VERY off the charts labs and I feel a big part of it is her attitude and not reading into any of the negativity out there, which I need to do myself. Thank you for your input. I still stand by my observation that people tend to only post horrible things on the FB pages. RARELY does anyone say they are having a great day, etc.
I too would rather have the knowledge about what could happen so I can notify my doctor if I see any of the signs pointing that way. Better than finding out too late. I also was one that was having great success a few months back, only to have it all fall apart so I am back to first base.
Kelly, you were right, seems the base line nausea is from my RA. Soooo, oh what the hay, just one more pill right???
Maybe, just maybe you think someone is doing well with RA because they have learned to cover it well. They have also learned to never admit to the pain because it makes others uncomfortable. I personally know four others with RA and not one is doing well at the moment. But I know this because we will tell each other the truth. Some days are much better than others, today really stinks. I had to get our area winterized for all of the critters we take care of in anticipation of our first freeze. All of the extra activity made me really wish I could have a day off from RA. But our critters were snug last night and so was I!!
What would be sexy with R.A. is for Rhummy’s to live
up to the oaths they have sworn to uphold. Treating patients. All patients!!! I live in Phoenix Az. A metro
Center of over 2 million people where one Rhummy
Office after another has slowly stopped taking patients with insurance they don’t like.
I’m not talking about the recent issues in the news,however that will only worsen this issue.There
is not a Rhummy in the Phoenix area that will take medicare with a Humana supplement.
It wasn’t sexy getting R.A. at 38 years old. R.A. is not
Self-inflicted like alcohol or drug abuse,and in my case
not heriditary. I was a very hard working and successful citizen doing everything correctly including paying into the Social Security “INSURANCE” fund. To penalize people who need
help from that ( Social Security Insurance) is morally wrong as physicians.
The primary physicians don’t want to get involved in
Even just writing scripts for methotrexate, arava and
The steroids.
There is nothing ” Sexy” about the Rhummy’s palliative care attitude’s. No one is ever cured under
A Rhummy’s care. They are disinterested in how much pain you are in. Udderly amazed how much
A joint can swell……yawn… write a few notes and order more blood tests….. The least they could do
When you get to see one is pretend to be interested
In your plight before making their plans for the weekend from the next room.
Sounding dismal….. I’m not….they are though!! They
Keep hiding under the umbrella’s of not enough funding….. when there is test cases right under their
Noses….Us!!!! If they’d open their ears,listen, take some interest in the people before them, and take
a few cases that might in their eyes be considered charity…. This disease and it’s cure might be a lot
further down the road.. Perhaps they could work on
a pain scale that even they could understand. Example 1- 10 .So is it a 10 when you have whacked
your thumb with a hammer or is it a 10 when you fallen
having broken a hip! Starting with basics might be
SEXY!
I though fight this disease everyday. Everyday is a new battle. You must be truly a Warrior.Because these
SEXY RHUMMY’S will leave you hanging!
To us, there won’t be anything sexier than the treatment that eventually works enough to make that possible. Except maybe the researcher who discovers it… or the rheumatologist who prescribes it.
You forgot the insurance that will allow it…this infuriates me more than anything. Most of us take the time to read every thing we can get are hands on regarding new treatments, discussing with our doctors all the possibilities only to have an entry level employee deny the claim because THEY have never heard of it…they don’t even bother to ask their supervisor or investigating the claim with their superiors…who’s the Dr. here?
Part of the answer to this is to educate the public (which includes the medical companies and governments) about what RA really is & the treatments needed. This is one reason we created the RPF – http://rheum4us.org.