It’s understood that disease is a symptom — it’s a signal that something’s wrong. However, there is a significant number of people that suffer from chronic pain and, partly because of this, the discussion is now turning to whether pain, itself, should be classified as a disease. As with a lot of things, there is good news and (maybe) not-so-good news in this. Read more in my article at rheumatoidarthritis.net: https://rheumatoidarthritis.net/living/is-pain-a-disease/
The Global Healthy Living Foundation (www.ghlf.org) has sent a list of links below that can provide assistance to those needing medical assistance in the wake of Hurricane Harvey. In addition, this link (Take Action Now) will provide you with the phone numbers and talking points for the governors of Texas and Louisiana to ask them to request the U.S. Department of Health and Human Services (HHS) activate its Emergency Prescription Assistance Program (EPAP). This program will ensure that eligible patients can receive their desperately needed prescriptions at no cost from participating pharmacies.
As a resident of Dallas, we were largely unaffected by the Hurricane, but we are now receiving thousands of evacuees as people are able to leave Houston for safer ground. These people need all the help we can give them.
Thanks for anything you can do.
Helpful links to share:
- Infusion Center Locator (https://locator.infusioncenter.org/) – Allows the display of infusion facilities as temporarily closed (live and up-to-date)
- Healthcare Ready’s RxOPEN page (https://www.healthcareready.org/rxopen) – Resource that displays operational capacity of retail pharmacies within impacted communities
- This group (https://www.facebook.com/groups/HurricaneHarveymedicalsupplies/) was created by health advocates active in their health communities. They are taking donations & mobilizing volunteers to fill untapped needs for patients with chronic conditions
- Disaster Relief Resource Pages: (https://www.healthcareready.org/resources) & (https://infusioncenter.org/disaster-relief/)
- FDA resource pages on safe drug use after a natural disaster:(https://www.fda.gov/Drugs/EmergencyPreparedness/ucm085200.htm )
- Please also see this resource that may help with future planning:https://creakyjoints.org/living-with-arthritis/emergency-preparedness-tips-for-the-arthritis-community/
I had an appointment with my dermatologist today. In the next five business days, I’ve four medical appointments scheduled — all involving things poking me. Sometimes I have to wonder if it’s all worth it.
Some of the treatments for RA are scary, but NOT treating RA can be devastating. Read why I believe this here: https://rheumatoidarthritis.net/living/nothing-is-worse-than-nothing/
Wouldn’t it be great if we had some kind of visual indicator about how our RA was really doing and whether or not our treatment plans were working? How about an RA bio-decoder ring. Read about it here: https://rheumatoidarthritis.net/living/i-want-an-ra-bio-decoder-ring/
I am really so frigging tired of having something wrong with me all the time. Sometimes it just seems like all I do is go to doctors and do tests and take medication. Now it seems there is a good chance I have yet something else new. And not just any old everyday something, but a “rare” disease that has no cure, is progressive, and the probable solution is some fairly serious surgery.
I reported earlier that, thanks in part to RA, I had developed problems swallowing and imaging showed a narrowing in my esophagus. I went through two separate esophageal dilation procedures where, under anesthesia, I had a tube inserted down my throat that had a special balloon that inflated and stretched out this narrowing. While those procedures returned my esophagus back to normal size, they didn’t solve the problems I’ve been having swallowing.
I went back to see my gastroenterologist (who, next to my rheumatologist is one of my favorite doctors of all time). It turns out that when I had the barium imaging done, the radiologist left of a very important piece of information. The imaging showed a distinctive issue (called a bird’s beak) that is basically only attributable to achalasia.
Basically achalasia is caused by damage and/or destruction of the nerves in the esophagus. This, in turn, prevents the esophagus from working correctly and the opening to the stomach from functioning as it should. Guess what one of the leading culprits of this nerve damage is? Right. Inflammation.
I am going in next week for some definitive testing to rule out some other, less serious spasm conditions. It’s called esophageal manometry. It’s not pleasant, involving a tube down my throat while I’m awake. If you’re interested, you can read more about it here: https://my.clevelandclinic.org/health/articles/esophageal-manometry-test. While it takes a couple of weeks to get the interpretation back, the test will definitively tell us what’s going on, so I’ll know whether I’m suffering from a rare, incurable disease or simple run-of-the-mill spasms. Oh, and Medicare will pay for the test, but won’t pay for the doctor to read the test results. Sigh.
One of the things that apparently helps is taking a calcium channel blocker which is often prescribed for high blood pressure. I’m already taking one of those, so I can’t say it’s helping much. Interestingly enough, another thing that helps is peppermint oil. So for the moment, I’m mainlining peppermint Altoids. (Seriously. I wonder if I can get Medicare to pay for them?)
In other news, my TKR knee continues to plague me. I’ve given up and my doctor has ordered some nuclear imaging scans (requiring blood draws and injections) which I’ve scheduled after the esophageal manometry, sandwiched in between Labor Day and my next infusion. Between all that and my upcoming flu shot, I am once again going to feel like a pin cushion.
I really, really hate this crap.
I hope your days are going better than mine seem to be at the moment. Thanks for checking in.
Even as a child, “can’t” has been a four-letter word that I’d rather not have in my vocabulary. Finding out that I can’t do things because of RA has been a particularly painful lesson for me. I elaborate more on my latest article for rheumatoidarthritis.net, here: https://rheumatoidarthritis.net/living/the-frustration-of-cant/
What does self care mean to you? For many of us, it’s that much-needed time that we take for ourselves. I take another look at a more basic, personal definition of self-care in my latest post for RheumatoidArthritis.com here: https://rheumatoidarthritis.net/blog/another-view-of-self-care/
On Wednesday, August 2, FDA advisors voted 12-1 against approving the promising new RA drug, sirukumab. In a field dominated by TNF-targeted biologics, this was a new anti-IL-6 drug. Actemra and the recently announced Kevzara are the only other two IL-6 drugs on the market. While the trials proved that the drug’s effectiveness is “robust”, the primary concern, as reported by Medpage Today, is the drug’s safety, although earlier reports also mention potential flaws in the trial design that could impact the trial’s reported results.
I have mixed emotions about this announcement. On one hand, I hate to have major setbacks for what appears to be a great new option for RA patients, on the other hand, I want our drugs to be as safe as possible and applaud the caution in withholding approval.
There was another discordant note in this news story, however, that took me aback. This was the soundbite from the one person who voted FOR approval of the drug — he was the “1” in the 12-1 vote. His name is James Katz, MD and he is the director of the rheumatology fellowship and training branch of the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases in Bethesda, Md. According to MedPage, he said, “This drug doesn’t scare me any more than the other biologics. I’m scared of all the biologics.” And this is the guy who voted for approval???
Why does this bother me?
In a world of fake news and quotes taken out of context, I went in search of the full statement to see if he elaborated further. I was on a panel recently with another leading rheumatologist who stated, “RA is a serious disease and it takes serious treatments to combat it.” And let’s face it, serious drugs can be scary. I thought perhaps that Dr. Katz’s comment about biologics were along these lines.
But other than the mention in Medpage, I haven’t (yet) been able to find anything further on the comment. (I’m still looking so if you find it before I do, please let me know.)
My concern is the effect of these words can have on RA patients, particularly those who are contemplating a biologic for the first time. Yes, it’s true that biologics can have serious side effects. But it’s also true that thousands of thousands people use them on a daily basis without problem and are able to lead fuller, more productive lives by helping control the devastating effects of this disease. While treating RA is serious business, NOT treating RA is even more serious. Without treatment, RA can be debilitating and, once the damage is done, it cannot be reversed.
I personally am on a biologic and methotrexate and I am doing better than I have in a long while. But that’s not the right answer for everyone. I think treatment plans need to be personal, that they need to be decided upon by the patient and the doctor, and that the full mosaic of information needs to be considered when making that decision — not just a soundbite.
I hope the soundbites in your life today are happy news. Thanks for checking in.