A day in a life with rheumatoid Arthritis – Part 2

This post is a continuation of my story from Part 1 (click here to read) about living with the experience of rheumatoid arthritis symptoms.

Why do I write about this experience?

  • To find people who have cured RA disease for themselves.
  • To connect with others who share a similar experience with illness.
  • It’s for my personal memoir file.
  • It’s for personal therapy.

When did this experience begin?

I first experienced symptoms in my feet more than 14 years ago. My family doctor and physical medicine specialist were stumped about the cause of the pain and inflammation. It seemed that the only obvious choice, at the time, was to prescribe orthotics or specially designed inserts to wear in my shoes making it more comfortable to walk, but before I went through with the orthotic order, another symptom showed up.

One day my wrist swelled up creating a burning pain with redness. The pain was so intense that I couldn’t shift the gears in my car or open doors with the swollen wrist. The swelling lasted a day or so before it subsided.

How is RA disease diagnosed?

When I mentioned the incident to the physical medicine doctor, she ordered blood-work and a nuclear body scan. The doctors hunch was correct; the blood-work tested positive for RA disease and the body scan confirmed the presence of “hotspots” due to inflammatory RA disease in my feet, wrists and hands. A referral to the rheumatologist followed.

I didn’t have a clue as to what this RA”thing” was all about and in fact didn’t care much to find out either. I had a busy life and too many other worries. In hindsight, the symptoms weren’t that bad in the beginning, a bit of a nuisance that interrupted a few things, but certainly not debilitating.

What does one do when one is diagnosed with RA?

The rheumatologist prescribed the standard RA treatment protocol that began my journey with pharmaceuticals. At the time, I didn’t know about naturopathy or about other natural healing modalities like TCM, Ayurveda, energy work, etc.

abridged version

Within the first year of being diagnosed with RA, the rheumatologist tried me on an anti-biotic called mino-cycline. Studies showed that some patients responded well to this form of treatment.

What were the results?

Thankfully, the pharmacist informed me that the studies also showed that it took a minimum of 6 months to become fully effective. As per his advice, I hung in and discovered a much improved condition. My feet no longer hurt when I walked nor did I have flare-ups in other joints. Life was good, except for the fact that the anti-biotic created bouts of severe stomach issues.

The anti-biotic treatment considerably slowed the disease progression. I was able to work out at the gym and walk 5km’s a few times each week. I worked everyday and didn’t take much sick time off.

By this time, I had researched a little about RA and anti-biotic treatment. I discovered that some doctors believe RA is caused by some kind of invading micro-organism, either bacteria or virus-like organism. When I asked the rheumatologist why the anti-biotic helped the symptoms, she explain that they didn’t know why it worked for some people.

Is it helpful to stay on an anti-biotic for several years at a stretch?

Several years went by before I became concerned about the long-term effects of anti-biotic treatment. Since I felt fairly good, I decided to wean myself off the drug. At the same time, a friend recommended a naturopath, so I decided to follow-up with a natural healing protocol.

The sound of water

What happened then?

Over the next few years, the RA symptoms continued to get worse and worse until I was completely incapacitated in 2008. I had never experienced such debility before. My entire body hurt, every joint was swollen and painful including my jaw. The only food I could eat was soup because I couldn’t chew or open my mouth wide enough for anything except liquid.

In the meantime, I visited my rheumatologist for regular 3 month check-ups, however, she had to follow the RA treatment protocol as dictated by the medical association. There were only certain drugs she could prescribe. None of the drugs helped and in fact, I believe made my condition worse. I also tried to go back on the anti-biotic however, I couldn’t wait the 6 months for it to become effective, besides my stomach issues had progressed to the point that I didn’t tolerate the drug well.

Is there really help for RA?

By the end of 2008, I had moved up the ladder of accepted RA treatment protocol and into the realm of TNF (tumor necrosis factor) blockers. TNF is a protein that causes inflammation in the body. Patients with inflammatory disease such as RA and Crohn’s are often prescribed a TNF blocker that helps block the protein from creating inflammation in the body thereby reducing the pain and damage caused to the tissue. Sounds harmless enough, right? Let’s see…..

TNF blockers cost in excess of $1,500. per month. From my personal experience, they are not worth the money because the anti-biotic I took for several years was way more effective and only cost $200. per month in comparison.

What about TNF blocker risks?

FDA press releases in 2008, 2009 and 2011 warn of the increased risk of leukemia and lymphoma in patients receiving TNF blockers. In fact, the type of lymphoma identified is very hard to treat.

Is a TNF blocker enough?

Now, I have to tell you that my rheumatologist insists that I take a drug called metho-trexate as well. Metho-trexate inhibits the metabolism of folic acid and generally “screws” up proper cell division. Folic acid is necessary for proper cell growth and formation. Metho-trexate is used to treat some forms of leukemia. It’s not known why it supposedly helps RA patients, except that it inhibits the immune system from reacting, conversely increasing the chance of serious infection. My rheumatologist insists that, according to studies, metho-trexate and a TNF blocker combined are a more effective treatment.

Round and round we go....

What about side-effects?

I won’t go into all the side effects I’ve experienced from taking these two drugs. I’ll just say that sometimes I wonder what is worse, adverse effects from the drugs or adverse effects from the RA symptoms, then I remember what I just went through over the last few months.

How so?

January, February and March of this year brought improvement to my condition. Why? I don’t really know. In a previous post, I talked about experimenting with a self-designed healing protocol; energy work, ayurveda and meditation. I had such improvement that I put off taking the RA injection and meds.

In April, I couldn’t afford to continue with energy work treatments and the Ayurveda herbs became back-ordered.  Meditation wasn’t a problem. Throughout the month I packed to move and the symptoms increased and increased to the point that I became severely debilitated again despite the re-introduction of the Ayurvedic herb and other natural anti-inflammatory substances.

By early June, I had no choice, I couldn’t function at all. I went back on the pharmaceuticals. The improvement is slow, but better than what I’d been through, so that is saying something. However I’m still not convinced that this is the best route to follow in the long-term, but when you have a flat tire, sometimes it needs a patch.

Fiddling through life

Why am I not convinced?

On the one hand, we have 2 pharmaceuticals that alter the immune system and proper cell formation. They are shown to relieve symptoms of disease in some patients. On the other hand, we have an anti-biotic that kills bacteria, fungi and parasites, but has no effect on virus’s. They are two completely different ways of dealing with the symptoms of RA disease. In my experience, the first (TNF and Metho) has had a very limited effect and the disease has progressed like lightening, the second (anti-biotic) was way more effective and slowed the disease progression to a snail’s pace, as I mentioned earlier.

Where do you think all the research is headed in RA treatment?

If you guessed research is going into altering immune system reactions you are correct. The obvious question for me, having tried both forms of treatment is, “Why was the anti-biotic treatment way more effective at stopping the severity of the symptoms and disease progression?”

What’s the plan now?

I need to find medical doctors and researchers who have an interest in the micro-organism cause theory because although I’m not a doctor it doesn’t make sense to me that my immune system is over-reacting for no reason. Maybe I’m naive, but in my mind, it must be reacting to something that is present in my body that is causing it to over-react.

Thanks for reading. I really appreciate it. Part 3 will follow soon. Comments are always welcome.

Disclaimer: I have no medical expertise or training, nor am I a medical researcher.  I am strictly an RA patient who comes across information here and there as I live with the experience of RA disease in my body.

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12 thoughts on “A day in a life with rheumatoid Arthritis – Part 2

  1. Wow–what a journey, Marianne! It’s amazing to me the way illness changes a life. My bipolar disorder has taught me so much! Thanks for sharing your story. I look foreward to reading more!
    Kathy

    • Yes, it really does change a life. Your story is a “Wow” journey also, Kathy. I admire your courage and honesty in the posts that you wrote. Thanks so much for reading and commenting. Hope you have a great weekend!

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  6. Wow you are a survivor Marianne. This may sound a little off-the-wall since I don’t know you that well but have you looked into anything spiritual – like prayer or the metaphysical meaning of diseases? This just might put another interesting perspective on things. When I had knee trouble last year I read it was symbolic of ‘feeling unsupported’. When I realized there was truth to this and then looked for the support I needed my symptoms seemed to have dissipated. Weird but I’ll take that:)

    Thanks again for sharing! You are one brave soul my dear!

    • Hi Candace, I agree about the metaphysical meaning of diseases. It’s something I’ve been researching and contemplating for a while now. There is much for me to learn through this experience of RA disease. Hopefully, we can chat about it one day and maybe I’ll write a blog about it as well. Thanks so much for your reading and commenting.

  7. I may have said this in my comment on part one, but it bears repeating. I cannot imagine what you’re going through. I’m learning a lot through reading your story. Thank you for sharing.

    I wish I knew of someone in that field. I’ll ask around and see what I can find. I know a few medical researchers and docs, although none that I know specialize in immune disorders or micro-organisms. However, they might know of someone so it doesn’t hurt to ask.

    • I appreciate your kind heart, Robin. Dealing with disease can be very frustrating at times, however, I’m learning a lot also. Thanks for reading and commenting, Robin. 🙂

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