Monthly Archives: November 2013

Online Support Groups for RA

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When I was diagnosed with sero-negative rheumatoid arthritis I knew very little about the disease as a RN. I’d never heard of the sero-negative variety. It’s just not covered in RN school. I would dare say the average nurse thinks RA is a really bad form of old age arthritis because that’s what I thought and that’s what my nursing colleagues thought as they went with me on this diagnostic journey to find out what was wrong with me. I was reeling after diagnosis and was even more alarmed to find that RA is an autoimmune disorder and arthritis is just symptom of the disease process. The first thing I did was to start researching everything I could find on the subject using the internet. I found some really good informative stuff from reputable websites, but I wanted to know how people with RA felt about their diagnosis, the progression of the disease, and how their treatment plans were working. That is when I discovered online support groups for people with specific diseases.

The benefit in joining an online support group for me was that I did collect enough first hand accounts of the disease process, treatment plan, and problems encountered by RA patients that I saw some definite patterns emerge that were not always congruent with what modern medicine had to say about the illness. As my own symptoms progressed, I began to see that patients knew more about RA than many medical professionals. I also learned not all rheumatologists are created equal and there are some really gray areas on the map when it comes to diagnosing and treating RA. Back then, there wasn’t a such thing as the Rheumatoid Patient Foundation to give you the straight facts, but there was a woman trailblazing advocacy for RA patients, Kelly Young, at http://www.rawarrior.com. Through Kelly and other RA patients I learned much more about RA than I could have ever read in a book which assisted me greatly as I prepared to battle this disease.

As time has worn on, I have found that not all patient forums are the same. I do have to say that over a period of time these types of rooms can become toxic, especially the ones that use social media. You need to be aware of some signs of a poor fit for chat about RA and remember that RA patients generally don’t feel well and the human nature is such that a group of hurting people aren’t always that kind, can make prognosis seem dismal, can squash your hope, prey on you, and try to tear you down. For example, I found myself on the other end of being bullied today by a fellow RA patient in a social media site who disagreed  with me on a topic and set about to squash the conversation through childish tactics. I messaged a room moderator to handle the problem and then it was addressed in a inappropriate, non professional manner, so I removed myself from that group membership. It wasn’t for me.

So, what is the new RA patient to do? If you can’t find a local support group that meets face-to-face, I would recommend you start with http://www.rawarrior.com and explore the archives. Also http://www.healthcentral.com/rheumatoid arthritis has some very good articles written by caring people with RA that can be a help to you. If you live in a rural area and can’t find a a face-to-face support group in your area I don’t want to leave you with the impression there are not any good online support groups out there. In fact I still have membership in a few internet support groups, but do enter these with caution. The Mayo Clinic published these guidelines* about internet support groups:

Be especially careful when you’re involved in Internet support groups:

  • Keep in mind that online support groups are sometimes used to prey on vulnerable people.
  • Be aware of the possibility that people may not be who they say they are, or may be trying to market a product or treatment.
  • Be careful about revealing personal information, such as your full name, address or phone number.
  • Understand the terms of use for a particular site and how your private information may be shared.
  • Don’t let Internet use lead to isolation from your in-person social network.

In addition, the Mayo Clinic published these red-flags* about support groups in general.

 

Not all support groups are a good match for you. Some may be driven by the interests of one or two members. Look for these red flags that may signal a problem with a support group:

 

  • Promises of a sure cure for your disease or condition
  • Meetings that are predominantly gripe sessions
  • A group leader or member who urges you to stop medical treatment
  • High fees to attend the group
  • Pressure to purchase products or services
  • Disruptive members
  • Judgment of your decisions or actions

Living with RA is hard enough when most everyone around you thinks you look fine when you are so sick, which can be a driving force for you to seek out others with your condition. In this era where social media is so prevalent, it makes it even easier to turn to the internet for that support. The internet can be a little bit more brutal than the real world because people can say and do some really nasty things when hiding behind a computer screen that they wouldn’t do if you were face to face, but it’s not all bad. I was fortunate enough to find my best friend on a RA bulletin board. God was smiling on me that day because she and her husband have been such a blessing to me. The first hand knowledge I gained through other patient’s testaments, struggles and victories are more valuable to me than anything I could have read in a book or learned in a classroom.

*http://www.mayoclinic.com/health/support-groups/MH00002

Holding Pattern vs. Crash Landing

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I feel like an airplane circling the airport in a holding pattern with my treatment plan for RA and I’m running out of fuel, threatening to crash land.

Last month I shared my hopes and my struggles with the new JAX inhibitor, Xeljanz. This month, I have to say that Xeljanz is going to be pitched to the failed medication pile. The side effects being caused by Xeljanz are greater than the benefit: abdominal pain, bloating, severe constipation, rise in CRP over baseline, side effect of high cholesterol levels that have landed me on Lipitor therapy when cholesterol was not an issue earlier, increased liver enzymes, decreased renal function, return of flares.  Honestly, at this point, I don’t know what I’m going to do about my therapy for my autoimmune diseases or if I even want to continue to see a Rheumatologist or try a different therapy for S-RA.

  1. My current insurance policy through the state of Oklahoma for people with pre-existing conditions  is ending December 31st because it doesn’t meat the requirements of ObamaCare. I only need three months of insurance in the coming year because I qualify for Medicare coverage on April 1, 2014. I didn’t even make enough money in 2013 to have to file a tax return so I don’t know how all the Marketplace Exchange debacle is going to work out. I may qualify for an exemption since I don’t have to file a tax return. I do know I absolutely have to have some type of coverage. Medical care is my greatest expenditure. Thanks to healthcare.gov being down all that is up in the air. I can’t even schedule doctor visits after Dec 31st because I don’t know if I’ll have insurance!
  2. I dislike my new Rheumatologist. I’ve now seen her for 5 visits and she can’t remember what she has told me from visit to visit. I was torn between screaming or crying last visit. I felt like I was in candid camera skit of “who’s on first”.  Me: How were my cholesterol levels? Her: Why are you concerned about your cholesterol levels? Me: Because they were elevated on my four month labs post therapy results and I’m concerned about having to stop Xeljanz. Her: Who told you that you’d have to stop Xeljanz because of cholesterol levels. Me: You did during my last visit. You told me that you’d need to get another lipid panel because if my cholesterol levels rose any higher I wouldn’t be able to stay on therapy. Her: I don’t know why I’d say that because we would just treat the cholesterol with medication. Me: We have. You asked me to call my PCP and ask him to start me on Lipitor. I’ve been taking it for the last four weeks. Her: Well, I didn’t get a lipid panel with your last labs. We will catch it on your labs in late November. Me: What was my CRP? Her: 7.3, that’s good. Me: It’s greater than the baseline level we took before I started therapy. Her: It’s not a bad level. Me: It’s the highest CRP I’ve ever had. I am sero-negative. Her: Well, it could go back down. We will check it in Nov too. Do you have any other concerns? Me: Yes, my left shoulder has really been hurting and is so stiff I’ve lost range of motion. Could you inject it? Her: Have you tried physical therapy on it? Me: Yes, after my first appointment with you  ordered physical therapy  and it was discontinued. Her: Who discontinued it? Me: You did because I flared so bad you had to give me low doses of Prednisone to get the flare under control.  Her: Oh, I see. Have you even had a joint injected before? Me: Yes, you injected my hand on my 2nd visit.  “““““silently screaming in my head to run like hell “““““` I don’t want to see her again.
  3. I’m taking myself off the Xeljanz. Over the last two weeks I’ve had abdominal pain, fever, bloating, and severe constipation. I tried to tell my Rheumatologist about these side effects and she said that Xeljanz doesn’t have the side effect of abdominal pain or constipation; however, she made me sign a informed consent form prior to starting Xeljanz that I would notify her of any changes in bowel habits because of the potential for gastrointestinal tears on this medication. The printed warning insert that comes with Xeljanz treats these symptoms as a serious side effect of drug therapy.  I’m seeing my PCP Friday to see what he would like to do moving forward with my care whether it is a referral to a new rheumatologist or if he wants to manage my care until I qualify for Medicare benefits April 1st.

I feel defeated. The pile of failed medication treatments are too numerous to ignore. The fact of the matter is that I will never be in remission because I’m missing the cornerstone treatments of predisone and methotrexate. No DMARD is going to work on it’s own without these other cornerstone treatments. My endocrinologist asked me during my last appointment if I’d just consider managing my pain and let these other therapies that are wrecking my body go (Xeljanz). I have to say at first I was offended, but in recent days it makes more and more sense. I’m a fighter and it’s hard to lay down my sword, but I’m weary of fighting. Maybe it’s time to admit defeat and just mange the symptoms and accept whatever quality of life I have now.

Yep, I’m in a holding pattern. Should I just go in for a crash landing or call the tower for a solution?  I don’t know what the answer is to that question tonight.