Excellent Rheumatology Care with a Horrible Rheumatoid Disease
RA Warrior is glad to welcome David Biundo to share some male perspective of living with Rheumatoid Arthritis. Over the last few months David’s rheumatologist has read and re-read his nuclear bone scan and various X-rays and MRI’s in order to carefully monitor the progression of David’s cervical spine Rheumatoid Arthritis. The nuclear bone scan was a pivotal factor confirming inflammation not evident on currently available blood tests. When most blood test results are “normal” as they are for David – and incidentally for a large percentage of RA patients –two things become very important:
- 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.
What commercials leave out about living with Rheumatoid Arthritis
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.
Fighting on with the support of family, patients, and doctors
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.
What is key is the support I receive from my family, my co-workers, and my Facebook and Twitter friends. The Twitter community of RA patients is a special group of people. It is amazing how everyone rallies around each other when one is in need. But last week, I received one of the most supporting emails I have ever received. It was from my rheumatologist. I was concerned that he may discontinue seeing me as a patient. This has happened to other RA patients and I did not want this to happen to me. His response was short and sweet and what I needed at that time. He said, “I will not abandon you. We have established a covenant. I am sworn to serve you. We’ll work this out”
And the fight continues…
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.
- 2 Reasons Monitoring Rheumatoid Arthritis Matters
- Where Is the RA Help Button?
- New Reading of the Nuclear Bone Scan: Credibility is Everything
- Death by Rheumatoid Arthritis: Possible and Preventable
NOTE: Your comments are an important resource for future readers of this post in the months to come. Please find the comment link below each post.Kelly Young. All rights reserved.