The trust relationship between doctor and patient: David needs to trust his rheumatologist literally with his life when it comes to the cervical spine RA. He knows he can, because his doctor trusts him, not scoffing at symptoms or wondering if David exaggerates.
The skillful use of monitoring tools: David’s rheumatologist must know that such imaging methods must be tools in his hands. He must know to order them and have them read or re-read accurately. He must be willing to look at them personally and know how to read them. Finally, he must be able to share them with the patient so that the images can become meaningful input to the patient’s treatment decisions.
One of the unique aspects of health care in the United States is the fact that pharmaceutical companies advertise to potential patients in print and broadcast media. I am certain you have seen and read many of them. I am always amazed when I read the two or three pages of disclaimers that always follow the advertisement. Like we would know what all of that means anyway.
If your doctor does not already know about these medicines, what does that say about them?
The problem that I have with these advertisements, especially in the realm of RA medications is that they give the average viewer the notion that RA pain is a nuisance and that it is easily controlled by using these drugs. One thing for sure is RA pain is not a nuisance, it is a 24/7 reality. You never get rid of it. RA can also cause you to be extremely fatigued, and run low grade fevers basically making you feel sick all the time.
When I see those commercials my girls always ask me: Why don’t these medicines work for you Daddy? (Yes they still call me Daddy and that is fine with me!) What the commercials never tell you is that 30% to 40% of RA patients don’t respond to these medications. Now we see Phil Mickelson doing Enbrel commercials. He is one of the fortunate ones. He has psoriatic arthritis and according to his testimony the Enbrel helped put him back on the golf course. Don’t get me wrong, I am extremely happy it is working for him. And more importantly that he is willing to go public with his fight. He is also being sponsored by Enbrel. It is a double edge sword you are compensated to endorse which brings its own set of opportunities and you now have someone who can help get our message out about our pain and suffering. And let’s also not forget that these diseases affect twice as many women as men. So you rarely see anything relating to RA and men.
This brings this whole story now back to me. I have had major setbacks in my daily battle with RA. I have been through 6 infusions of Orencia with no relief. What appears to be worse is the fact that my RA is presenting itself, quite nicely I might add, in my cervical spine. This is making daily life quite a challenge for me. It has become increasingly difficult to move and turn my head from side to side. I am reminded of this difficulty when I drive. I just can’t get away from it.
With this set back I am reminded constantly that something is not right. Sleep has become extremely difficult. I have never been a back sleeper, but this is now the only way I can lay at night. To combat this, my doctor and I have made the decision to go to higher dosages of steroids, muscle relaxants and pain killers. My walking pharmacy just got a little larger. The steroid boost brings its own set of side effects. My Doctor has also decided that we are going to stop all biologic treatments; I must be one of those 30% to 40% that don’t respond. We are not giving up, that is not in either of our makeups. But I am definitely wondering where this fight is going.
Postblog: Thankfully, David has had good medical care for his RA, even though his RA has so far been unresponsive. I’m also thankful that he shares with others so that they can learn from his experiences. People who don’t have RA hear the truth about this disease. Other patients know him as a valued encourager in our community.
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This post is really important to me. Thank you David for sharing your story. I’m another RA patient whose blood tests are almost always normal (seronegative, normal ESR, typically normal CRP). I had an MRI of the spine and SI joint, which showed nothing “remarkable”. This is extremely frustrating because the pain tells a radically different story. I truly believe that the damage must have been missed by the radiologist reading my scans. Either that or I am too early in the disease to show major damage.
Dear Marie, you might be helped by going through the posts here on nuclear bone scans (there is a link in the post & also in the Tags List drop down tool). Certain scans show damage, but others show inflammation like the NBS. X-rays show erosion damage or narrowed joint space, but MRI can show also soft tissue. There is variety in HOW they are done such as how thick are the slices. Plus if needed there is a second opinion reading, which from what I read, is not unusual. Ultrasounds (there is a series here on that too) can show inflammation that is deeper – but has to be done by an expert if used for that. Very few docs can do this right according to experts who use it in research. It takes special training.
Thanks Kelly. I did read about your bone scan saga. I am considering asking for a bone scan, but I’m afraid I will end up with another “unremarkable” result. I’m fortunate that my rheumy will order scans whenever I ask. I just haven’t asked in quite a while. Maybe it is time.
For anyone else who’s reading: one lesson from those posts and the many comments is that there is wide variety in rheum care & there are those who can accurately do these tests & those facilities where more training is obviously needed. While many, including the rheumatologist I had, will say, “These tests just don’t work,” there are examples that show that they can work, if the radiology team is skilled in doing the test for purposes of RA (inflammation).
First off I am with Dave in the fact without the RA community support, I’m sure I would be lost in space. As you know my Dr is finding that I may also have some cervical involvement. Mine seems to be not as progressed as Davids, but I do have decreased neck/head mobility. My Dr and Neuro are encouraging me to have that area strengthened, through surgery and removing bad areas and “restructuring”. I however am not ready for that.
I wish to thank Dave for being such a good #rheum mate and making others aware and sharing his RA stories. I would like to think that the commercials help awareness, but as pointed out at work the other day… uh not so. I was telling a colleague about RA, and she was like “oh there something now on TV that fixes it though right?” And I was like …we still have a tough road ahead to bring common folk up to speed on RA. Bless people like Kelly and David that help spread the word.
Russell thanks for your kind words. Where would we all be without our #rheum mates?
Thank YOU, David! As a male with severe RA and who is also treatment resistant, it was helpful to hear from another male who is challenged as I am. I also have RA in my spine. The pain is excruciating at times and it is, indeed, 24/7/365.
I will definitely be sharing this with my friends with the hope that women will read this, too. I do wonder if there are statistics that show whether men are more prone to being treatment resistant than women. Most probably not, as there are few studies of men with autoimmune diseases of any kind. This needs to change, yet it is our responsibility as men to speak out and stop being afraid to do so. I see this changing and more men are speaking out, but I’ve been in this game for 11 years and it’s slow coming. It’s not weak to be sick and we need to STOP THE SHAME! And we need to share so that other men will get to a specialist sooner than later so our prognosis is not so poor, as it is in my case.
Stand up, Speak Out and Share the Truth with the world. It is then that we will begin to gain more funding for male studies.
David, I hope we hear more from you. Thank you Kelly for introducing him to us.
Davide, thanks for sharing your story. I hope you find a medication that will help you soon. Hmmm, I like to think that the commercials give hope that one of the meds will help. Yes, he is being sponsored by his med company, but he is also back to golfing, so that is very cool (glad the meds helped,hope they continue to do so – one less sufferer). I have condered this subject before and I guess the reason they show people, golfing, gardening, and participating in activities of daily living, is the same reason they show skinny people on fitness commercials. It sells! They are not going to show people with deformities, and severely disabled when they are marketing their drugs (sad, but true). What I would like to see, is a documentary with real people living through this, and really educate people on what this disease can be. But, how would we get people interested in watching it? Has anyone seen the commercials on what smoking can do? They are pretty graphic, but get to the point! Just food for thought.
Thank you so much for sharing your story! Ra impacts so many, in so many different ways and many do not respond to the available medications. I wish that you find something that will help you with your continued fight and that you are able to tame the beast that continues to rage within you.
Thank you Dave, I am so happy for you that you have a true partner in your health care. Gives those of us that don’t hope that we might too some day. Without this blog, I would think I was totally, certifiable nuts.
You know what, I’m going to admit it, I was just like all of those folks that look at us like they just don’t get it…because they don’t. It’s not that I doubted people when they said they were in so much pain, but I still could not wrap my mind around what they were dealing with. If you can’t see the pain, it just isn’t as real to other people. I don’t think there are many that can “see” it, unless they experience it. Close family members or really close friends might, only because they knew the before person. The gung ho, go getter that that was the first to jump in the melee. The one that taught them to do a good job, do it right the first time and give people their money’s worth at a job. Looks like the person before them now, just not quite the same. This person doesn’t smile much anymore, has a bewildered look on her face. Like she is not quite sure what is happening or how she got here. How and why did it all go so wrong??? Why is she in molasses when no one else around her is???
Believe me I know it could be so much worse…I also know it could be so much better if we didn’t have to fight the very people that are supposed to be helping us.
Totally, Becky. I’d like to know actually. I’ve been super sick before (lyme disease, concussion that involved me sleeping 24/7 for a week and took a long time to recover but then it’s like I never recovered because this all started.) It’s never ending! I feel so freakin sick! It’s nasty isn’t it?
First and foremost thank you goes to Kelly for this medium for us to communicate with each other and the world. She has inspired me to be open in a way that will give support to others. I have never felt that my disease was as complicated as what I have read here. This is because I want to take the focus off of me and focus on others. All of your words and encouragement have touched my heart. So thank you all.
Yes my case is unique. Without my rheumatologist, I would be lost. My rheumatologist told me on Wednesday in his 30 years of practice he has never seen an RA case like mine. One that is so difficult to treat and one that has no response at all to treatment. He still has confidence that we can win this fight. When I read the comments about how some of you have been treated by your rheumatologist, especially Kelly, my heart breaks for you. I want you all to know that there are great doctors out there. I pray that those in need find one.
As far as my disease progression, this has definitely set me back. The engagement of the c1 and c2 vertebrae was the news I did not want to receive. The fact that I have been using multiple biologics and the disease was revealed to be actively attacking these vertebrae and eroding them was crushing. The pain and the ill feeling is constant, and it super cedes all the other joint pain right now. I am very scared right now, it is the fear of the unknown.
I write my facebook notes to spread the word about RA. Kelly has done such a wonderful job for all of us. But more is needed. We need awareness, we need understanding. And yes I have issues with the way RA is portrayed in the commercials. And yes, showing the reality of the disease would not help sell the medication. It is why Kelly’s RPF is so important. What do we see about cancer? Susan B Komen Foundation, Livestrong, are foundations that have successfully gotten the word out. We are only in the beginning and we can make it happen!
Thanks Dave for your story. I was xrayed 20 years ago and it was discovered that I have arthritis in my upper and lower spinal column. Ten years later I was xrayed and it was found that I have arthritis in my sacro iliac joints both sides. My rheumatologist maintains that this is not part of my RA but osteoarthritis and non related. Funny isn’t it how the same stories vary so much in doctor response. As a note, these areas are not being treated. I simply hope that they are being taken care of accidentally.
Have you tried rituxian??? I’ve had orencia enbrel remecade and all the others. Rituxian doesn’t totally get rid of it but the ripping tearing and pulling sensations have all but gone. It’s been 14 months since my last infusion and some of those symptoms are creeping back. So guess what scheduled another infusion. Good luck!!!
For some, Rituxan is a miracle. For others, it’s no use. This may possibly due to sub-types of the RA disease.
Also, David can share whatever he wants to, but I don’t want him or anyone to feel pressured to share personal details about their medications.
Curious what meds help most with the feeling sick and fatigue? Plaquenil I know helps with fatigue but can’t take that. Tired of feeling sick and tired and I haven’t even really got meds yet. And I’m stuck on 8mg of pred.
Dave – thanks for your candid story, it’s good to hear from a man with RA, and whose RA is resistent, blood test negatively, and presentation is outide the typical jurisdiction. Sounds like you have a great doc and I’m glad you have found him – so many others are led to believe that the disease is in their heads when the tests and presentation don’t align with the expectations of the unschooled Rheumy’s “out there” – there appear to be so many of them! Some folks think they understand this disease – they are relying on the perceptions built by the pharma industry, in the media (Prevention article comes to mind) and even those built up by some of the “leading” Arthritis foundations that minimize/mischaractarize this disease. Even my own husband, who considers himself schooled, didn’t realize the level of pain until our marriage therapist took him to task and told him point blank that I cannot do many of the things he asks me to do or expects me to do each day – we need our informed third parties to survive in this world of ignorance! So glad to hear your voice in the din, and courage to you, my RA friend!
Judy, thank you for your kind words. I know this, we are all in this together. The more we educate each other and those not inflicted with this disease, the more progress we make.
Thank you too, for sharing your story, Jenni. I hope you have found a treatment to help!
I am still trying to find a treatment. It seems to be a long process. I am taking the plaquinal 2 tabs. But that isn’t helping as well as it use to. I am starting to form nodules in odd places…like the inside of my hands and inside of my wrist. I have pain everywhere…from my neck down. (Including the fun migraines, high bp, and fevers)Thank you for letting me vent. I try not to complain or whine because this is just the way it is. But it’s nice to talk about it with people who understand what you are feeling and going through on a daily basis.
What Kelly has afforded us here a place to communicate, educate and support one another. It has lead to the creation of the RPF and the future for us has never seemed brighter. I am personally thankful the opportunities that have been afforded to me, even though my disease has still been unresponsive. I have made more connections with new patients because of these writings. These connections with fellow patients help me in countless ways everyday. Most importantly help me get through managing a very busy retail store during the Christmas season.
The covenant that I mentioned between me and my rheumatologist continues to be strong and I consider myself to be blessed by it. We have been trying to alleviate the pain that has been caused by my RA attacking cspine This has yet to happen and has been very difficult to endure at times. We have tried one occipital nerve block with some successs. Problem is it did not last long. I have been waiting since October for a second one to help. On January 18th we will try the next nerve block. My rheumatolgist was disheartened when he heard how long I have been enduring the pain still.
We have also started Rituxan therapy back in late August. It was his confidence in this therapy that lead me to trust him that this is what we needed to do, despite the risks. They are worth it to me right now. After 4 months my symptoms have not been relieved completely yet, so we are starting the next round of infusions early. We are going to do them for four consective weeks. We upped my prednisone again to try and get some symptom relief. My rheumy was also concerned about cardiology issues due to length of the prednisone treatment and also the fact the RA patients are twice as likely as diabetics to come down with heart disease. So my wife and I spent the rest of the day in the cardiology unit making certain I did not have fluid build up around my heart. My rheumy sent me to someone that understands RA and the impact that RA has on our hearts. While under going the battery of tests, the one attending nurse and I were discussing her fight in life. She has RA and Lupus. Fortunately for her, her RA is under control with Enbrel and mtx. We shared stories and most importantly how much more awareness is needed. There was no fluid around my heart but there were some concerns for now so I will continue to see the cardiologist before my next infusion just for precaution.
What I want everyone to know is that we are heading down the right paths. Kelly and the RPF have opened many doors for us and will continue to open more. My days are sometimes tough, I dislike all the meds, I dislike what RA has done to my family, but I am not giving in. It is just hard at times. If you get a chance look me up over on Facebook or twitter. Support is what we need, and I promise I will help you any way that I can. God bless you all and thank you for being here and listening/reading.
Thank you for the information on scans here. I have been wondering if I should be asking my Rheumy to take some scans. I was bedridden 2 years ago when I came down with the symptoms of RA. My inflammation in my blood was at 126. My hemoglobin was ragged. i was a mess. Every joint in my body was affected except my spine. However last summer I lifted something and broke my back. They took X-rays at the time and said I had crushed two disks in my lower back but that it was not bad enough to operate on, but also that it showed that I had Osteo in my spine. I was supposed to take calcium and also a couple other meds to increase bone density. Anyways long story short, my back is not getting any better. Its not too bad though. Just a dull ache all day and night. Truly not as bad as the exhaustion that goes along with this disease. The good news is my inflammation in blood is at normal now. I got my iron up. The mass of drugs I have been taking the last 2 years has gotten me out of bed. We are now lowering my pred. I was on 6 pills a day and down to 1 and a half. The MTX and Enbrel seem to be working for me. But when I look back to last summer (A year ago) I think I had more energy and more of a sense of well being just for a window of time. That was pre Enbrel. But I was on a lot of Prednisone, so maybe I had energy from the steroids? Or was it the Arava? I liked the Arava for my RA, it seemed to work. Anyways, sorry for the ramble. The whole point here was thanks for the motivation and info on scans. I think I need some, and feel encouraged to ask my Rheumy or GP to do that for me. Thanks for all that you folks do for our community. The support makes all of the difference. Michele.