Book Review: The New Arthritis Breakthrough

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I wish I had read this book 3 years ago. It’s been 3-4 years since my inflammatory pain began, both in my upper back, left shoulder and knees. This is the first time I’ve been able to get a good grasp on what rheumatoid arthritis is, when it originated and what treatments have been successful in treating the disease. I should explain that the book mostly focuses on RA, but also delves into scleroderma, lupus, spondylitis and other rheumatic diseases. The author, Henry Scammell, includes many patient testimonials over recent years as a supplement to The Road Back, which is also included inside this book in it’s entirety.

One thing that impressed me while reading is the number of times Scammell gives perspective from both the patient and the doctor. I knew there were a lot of politics involved with antibiotic therapy, but what I didn’t know was the history behind the controversy. Each chapter is brief and to the point. I believe that is why I found it so engaging and hard to put down. In addition, the history behind medication used to treat rheumatoid arthritis helped give me a better understanding of why certain drugs are used to this day. From the origins of cortisone over half a century ago  to the introduction of methotrexate, I can now understand where these treatments began and the seriousness of their effects on the body.

Many instances throughout the book describe how dangerous corticosteroids and other DMARD’s can be over long periods. Rheumatologists that I’ve visited have always made me aware of such facts, and most seem to know the dangers of high doses over long periods. What I didn’t realize until after reading is that most of these prescriptions have decent levels of pain and inflammatory suppression, but only for a few years before they all lose their effectiveness. I understand that a lot of medications can really improve day to day living and reduce the possibility of further joint damage, but for me I’d rather not risk the long-term damage of my otherwise healthy organs for a few years of pain relief when I know it won’t last.

Without going into detail about mycoplasmas and the bacteria that’s involved with Dr. Thomas McPherson Brown’s antiobotic treatment methods, which is the premise for this book, I’ll say that the number of people treated by him with success and even long-term remission is enough to convince me to try the therapy. I just wish there was a way to follow-up with some of the participants since the publish date 5 years ago. It sounds like the political debate is ongoing, yet there is a lot of support within the roadback.org website and community forums.

Perhaps one of the most interesting things I discovered while reading is when most of the time a patient has had undiagnosed symptoms of inflammatory arthritis for several years, their doctor will eventually settle with rheumatoid arthritis as a diagnosis. I suppose that is why I’ve so far been treated with medications like methotrexate, plaquenil, sulfasalazine and prednisone. I haven’t yet been introduced to antibiotic therapy by any of the doctors I’ve seen, but it is hopeful to see minocycline now listed on the athritis.org website. Another thing I learned while reading is how different these antibiotics are from the traditional antibiotics used to treat things like sinus infections (the ones my doctor and pretty much everyone else I knew told me never to take too often or your body will develop immunity to those antibiotics, losing their effectiveness for future infections). Tetracycline, doxycycline and minocycline do not have the same makeup and are much safer to use over long term. It’s important to note that antibiotic treatment such as minocycline for long term arthritis treatment is not FDA approved. It’s no wonder no doctor ever seems to mention it as an option.

From the perspective of someone – anyone with inflammatory arthritis, symptoms of rheumatoid arthritis, psoriatic arthritis or even my favorite speller, seronegative undifferentiated spondyloarthropathy, The New Arthritis Breakthrough is a great resource. Even if you don’t agree with Dr. Brown’s antibiotic protocol, it’s worth being informed of all possibilities out there for treatment. I’m convinced it’s worth a try. Now I must find a doctor knowledgeable and willing.

A Fungus Among Us

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This week I reluctantly visited with an ear, nose and throat specialist to find out results from a tongue biopsy. Why? Well this story started approximately six months ago. Last summer I began to notice some mild discomfort on the top and back of my tongue. A month later I began questioning why the entire top of my tongue became coated with a white, pasty film. After a little reading I discovered what was described and felt like oral thrush. Sinus drainage has been a problem for me for as long as I can remember, but I don’t recall ever growing such a distasteful fungus inside my mouth.

Several weeks later the pain on top and sides of my tongue increased, and the discoloration would not cease. This was also about the time I started having a deep aching pain below one of my teeth. My dentist didn’t find any oral hygiene issues but did notice a few pesky tongue ulcers upon observation. I thought perhaps a chipped molar may be the culprit, but even after a light grinding of the tooth and some prescribed mouthwash the pain remained constant for weeks. Next I dropped by my family physician for a quick visit. He promptly agreed that it was indeed thrush and prescribed a bottle of clotrimazole lozenges. Lozenges. That can’t be bad, right? Let’s just say they don’t add much in the taste department. Another week went by and things were looking better. I still had some mild irritation, but the white stuff just would not go away.

Intensity of the thrush would come and go week by week, but the ulcers and sores near the back of my tongue became worse. Over the next few months I relentlessly tried rinsing with hydrogen peroxide nightly before bed, then tried salt water and purchased a tongue scraper. Yes, a tongue scraper. I’m sure my wife can attest I became a more attractive man due to the persistent scrubbing of goo off my tongue each morning. Out of all the experiments, I still think it has helped the most.

Finally, six months later I decided to check in with my general doctor once more. Puzzled as usual by my exotic diseases, he referred me to an ENT. Unsure of what to think, I took him up on the offer and figured, why not? While the specialist didn’t say much about the hostile white growth all around my tongue or the large discolored spot near the tip, he did think there was an abnormality on one side of my tongue and thought it may be leukoplakia. First he prescribed nystatin for a week to fight off a possible fungal infection, but it didn’t seem to help by my follow up appointment. “Do you think it may be a side effect from one of my medications?” I questioned.” I had checked with my pharmacist and learned that sulfasalizine may indeed be the culprit. Well the only way to tell is to do a biopsy to make sure it’s nothing serious.” Great, I thought to myself. Here we go again. Jumping through hoops is my specialty after all.

Thankfully, the results from the biopsy found nothing to be wrong. So is it the medicine? Back in December I asked my rheumatologist if I could reduce my sulfasalazine intake and he agreed to give it a try. Stepping down from 3,000mg daily to only 2,000 didn’t seem to help much however. I am still scraping daily, rinsing with hydrogen peroxide/salt water nightly, and filling myself with as many nutritional foods as possible without much change in appearance or irritation. Despite the relief that my tongue is not cancerous, I still feel left in the dark. More questions have arisen, including whether my intestinal health is a clue, candida is running amok or perhaps it’s part of or related to the  mysterious autoimmune arthritis picture.

The investigation continues…

Arava For Consideration

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Upon my last visit to the rheumatologist, he suggested if I’m not seeing results from my current meds I can try Arava. “Never heard of that one before”, I said. Some patients have had success he tells me, and since I’ve already tried methotrexate without any luck this apparently is the next step.

But how do I go about taking yet another new prescription without still knowing what I am treating? Besides having one clue (a brother with severe psoriasis), not one of my relatives has had a case like mine. And most of my grandparents and their parents are no longer here to ask. Sometimes I wish I knew to ask questions while they were still here. As far as I know there were a few cases of osteoarthritis, but nothing of the autoimmune variety.

So that leads me back to the next step in my investigation… or should I say treatment. Arava, or Leflunomide for those of us who like tongue twisters, is bright red on my hesitation radar. Anytime I notice severe liver injury as a possible side effect it makes me think twice. Not to mention it still feels like a treatment of symptoms rather than going after the cause. Another concern is the notation that Arava may remain in the body for up to 2 years after you stop taking it. I could go on and on about the other possible side effects or how many warnings mention the word fatal, but that seems to be the norm with most of the drugs used to treat rheumatoid arthritis or various other inflammatory autoimmune diseases.

After some searching, Arava appears to be controversial. When the FDA updates a medication with a box warning specifying, “risk of severe liver injury”, it makes me more than a little uneasy. Further details about the warning explain that death from liver failure  in over a dozen patients on the drug coincided with other medications they were taking that affect the liver. Regardless of how many other medications were involved, Arava has a definite affect on the body. I will continue to research Arava and other options in my quest to make an informed decision, but for now the side effects of this drug outweigh the symptoms I already experience.

Gloves For Your Feet

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Vibrams

Several months have passed since my last pool workout. Consequently, my knees have been pretty swollen and stiff from the lack of movement, warmth and water pressure. New Year’s resolutions never seem that exciting to me, but this year I do have one goal. Getting back in the pool at least once a week while supplementing some mild leg exercise once or twice more every few days is the plan. Nothing seems to make my legs feel more flexible and mobile than mild exercise. And the closest I can get to actual running is in the pool.

One thing that turned me off of pool exercise was the rough pool floor at my local YMCA. As I increased my running intensity underwater and gradually moved to a more shallow depth, it started getting harder to push off the bottom with bare feet because of the course surface. I noticed others wearing pool shoes so I set out to find some protection for my feet. Until I stumbled upon Vibram Five Fingers, I thought there may not be any footwear with such a low profile. They look just like gloves for your feet.

It was tough deciding whether the Five Fingers would work well in the pool for running since most of the reviews talk about running with them on dry land and all the models are quite pricey. Two models are available for water sports, the KSO and Sprint models. From the description online, the Sprints sounded like they might work for my activity. And as a splendid surprise from my family, I got a pair for Christmas this year.

So the next day I set out to take them for a test run. And what a run. They fit so snugly around each toe and conform well to your feet. At first they felt a little tight in the toes, but once I got in the water I didn’t even notice. While running laps it felt like they weren’t even there. The Sprints have straps that go across the top of your feet to help keep them tight underwater too. And since there isn’t much material in the shoes, they dry pretty quickly. So far I’ve used the Sprints a few times and would say they’re definitely worth the money, especially if they get me back in the pool. Out of all the treatments for inflammatory arthritis I still think aquatic exercise is the most helpful.

Autoimmunity Epidemic

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Are we on the edge of an epidemic when it comes to autoimmunity? Or just aggregated media spreading like wildfire? Among the expanding gluten-free sections at grocery stores and special menus now at restaurants and a multitude of online articles, NPR wrote an enlightening story referring to a study in a recent article about increasing cases of celiac’s disease, an illness caused by the body’s reaction to gluten.

What I find interesting is the question about the number of cases reported more recently and how more cases of the disorder are showing up in older people who have eaten gluten packed breads and grains for decades. So why is going gluten free, celiac’s disease and autoimmunity such a big thing these days? Maybe it has more to do with our over processed world of consumption than we think.

One of the experiments my wife and I have tried lately is cooking with more whole foods, and little or no processed ingredients whenever possible. I have to say, its’ so difficult! Everything around us is processed. It’s quite a chore to find ingredients that are natural or whole and food companies seem to latch on to “natural” or “organic” to fill their pockets more than a concern for our health. But that is another topic on it’s own.

The past two weeks I’ve gone gluten-free to see how it affects my knee inflammation. So far I haven’t seen a lot of change in swelling. While it has been easier to find gluten-free products at the grocery store, most of those products still suffer from the inevitable soy preservatives or highly inflammatory oils such as safflower or sunflower. Some days I feel like organic vegetables are the only non-tainted foods left to safely eat. Positive as that might be, I often wonder what’s harmful about them when I know they are not locally grown.

Now that celiac’s disease is more commonplace, even with people that haven’t had it for 60 years, we may start to see a change of mind when it comes to processed foods. I hope that day is soon.

Am I Asking My Doctor the Right Questions?

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After making the trip to see my rheumatologist this week for a 3 month return visit, I kept asking myself whether I asked all the right questions. Maybe it’s because my doctor is 2 hours away and it’s more difficult to make a last minute appointment. Or it could be that I tend to worry more than I should. Regardless of either, I choose to take autoimmune problems seriously. Especially when it comes to medicine. Over the past few months my knee swelling has slightly elevated while the pain has not. I went to my last appointment thinking overall my inflammatory arthritis has improved. But has it? My legs feel stronger. I can literally see more muscle growth in my upper legs and my workouts have progressed. But the flare ups continue with significant effusions above both knees. At the same time I continue to taper my dosage of Prednisone 1mg each month.

While talking with my doctor, he mentioned the possibility that my inflammatory spondyloarthropy may still progress and if the current medicines do not work he will consider stronger methods like TNF blockers. I fear biologics like the plague. And I’ll admit, I’m pretty skeptical of any medicine when there may be potentially harmful, long term side effects.

Since I still have no hard evidence of exactly what my condition is yet, it’s difficult to feel like I’ve made much progress in finding a correct diagnosis. Furthermore, each time I visit my rheumatologist I wonder whether I should ask more questions about methods I’ve discovered to help like exercising and nutrition. Even though I like my current specialist, I feel that most treatment is more standard practice and not enough discovery. As the patient, should I ask for more options? In the past 2 years I feel like physical therapy and slow, steady water exercise has helped me regain strength more than any medicine. Then again, I’m lacking about 20 years of medical education and experience. Maybe it’s time to start med school.

Eat LESS Acidic Foods Like Lemon and Grapefruit

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Due to an extended period of prednisone treatment for my inflammatory knee arthritis I recently developed a pesky case of thrush on the back of my tongue. The kind babies get? Sigh. Yes, the kind that babies get.

After 5 weeks of this annoying white stuff, irritation, rinsing daily with hydrogen peroxide, endless brushing and scrubbing, I had it checked out by my local family practitioner. He gave me some lozenges to take for a week but that only seems to work slightly.

Naturally, eating foods like lemons or grapefruit tend to sting so I’ve been avoiding them. Little did I know, those could be the foods that I need to eat right now. I stumbled across an intriguing article titled, “Acid and Alkaline-Forming Effects of Food and How Your Body Maintains a Healthy pH” that made me think twice about the foods I eat. To my surprise, fruits like lemons and grapefruit have a moderate to strong alkaline-forming effect on the body.

Lately I’ve probably had more processed sugar and white flour than normal and began to question whether that isn’t helping my situation. I do eat a lot of fruits and vegetables but it seems as if every time I eat a lot of bread and meat together I get a subtle feeling of acid reflex in my throat. Dr. Kim explains in his article that normal functioning bodies have processes in place to keep your ph level in balance. Eating a lot of acidic foods can overtax those processes causing all sorts of problems. Maybe it’s time to back off on the boxed cereals, meats, cheese and other highly acidic foods since most medicine and antibiotics already have a moderate to strong acid-forming effect on the body. Perhaps keeping my body’s ph level in check will also prevent candida from surviving on my tongue.

Healthy Returns

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It’s been awhile since the last post. Because it’s summer? Because I’ve been out of town almost every weekend for the past few months? Or maybe I’m just tired. Excuses aside, there is one big reason. My recurring knee inflammation has improved significantly. Sure they do still swell up from time to time, but I’ve finally found some relief. Last week I finally finished 6 months of physical and aqua therapy with the reassurance that I’ve gained strength in my legs for every test. I couldn’t be more excited. While I still can’t run or fully flex my legs (sitting on the floor cross-legged is completely out of the question), I can move around more freely, get outside and wash the car, walk up and down stairs normally, and though it may sound crazy, get up out of a chair or off the sofa without using my arms. Indeed, it has been a tough journey getting to this point. I feel much more energy and  have gained a few much need pounds again.

My rheumatologist in Iowa City has been extremely helpful, courteous and caring. While I continue my search for a complete diagnosis, all the docs will say at this point is “inflammatory arthritis”. Could it be early signs of ankylosing spondylitis or something more serious? It’s possible. At least I now know that with a little help from some medication with less side effects I can exercise enough to gain some strength once again. For now I’m continuing pool exercises twice a week and also tackling a few land exercises. Progress is slow but hopeful for now.

Time to Get Rid of These Melons!

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For the longest time I’ve had so much fluid on top of each of my knees it felt like I was storing large melons under my skin. Nothing had been working so I decided to search out a new physician. Last weekend I had the chance to meet with a rheumatologist at the University of Iowa clinics. Armored with a stack of medical records and labs an inch thick,  complete spreadsheet of my medical history, daily log of every food I’ve consumed, daily pain and inflammation notes for the past 8 months, and a few x-rays and MRI results, my wife and I set off on a new journey to find some answers. I can’t thank my loving wife enough for organizing all my records and documenting so diligently.

To my surprise we had a great experience with the specialists at the University of Iowa. Both our resident and rhuematologist took special care to study my records and history beforehand and genuinely took an interest in my puzzling case. They spent 3 hours with us, testing, asking questions and analyzing fluid from my knees during the visit. Over the next several months I will be trying a few new prescriptions (sulfasalazine, low-dose predinsone, hydroxychloroquine), thankfully with less severe side effects to see if my swelling will subside. After draining the fluid from my effusions, the docs gave me a cortisone injection in both knees. Needless to say they’ve felt so much better ever since. My right knee is doing great while the left still is a little full and painful to bend. We’ll see what happens when the steroid wears off, but for now workouts have been so much easier and I’ve even been able to regain some leg strength from aqua therapy.

Over the next few months I hope to get results from new x-rays, an MRI and lab tests to find out if we can narrow down a possible diagnosis. Until then, I’m going to enjoy my legs while I have the chance!

Septic Arthritis or Reactive Arthritis?

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After a recent blood test to rule out Lyme disease and heavy metal toxicity, I asked my family doctor about bacteria and whether it could be a cause of my chronic knee inflammation. He did a few blood tests and I did test high for Strep B. Since I’m on hold for a few weeks to see a new rheumatologist I decided to do a little googling to see whether there is any correlation. To my surprise, septic arthritis has the exact same symptoms I’ve had for the past 2 years!

According to Mayo Clinic’s definition of Septic Arthritis, germs infiltrate your joint — usually just one — and damage it, causing severe pain. Bacteria most commonly target your knee, though other joints can be affected. This sounds a lot like my condition, which is almost exclusively located in my knees. The symptoms for septic arthritis include fever, shaking chills, pain when bending the joint, swelling and warmth of the affected joint. Last spring I went through several weeks with a low grade fever and chills almost nightly. I no longer have the fevers or chills but the pain and swelling has remained. Furthermore, septic arthritis can be caused by bacteria, including strep bacteria, which starts with an infection somewhere else in the body and eventually works it’s way into and attacking the joint.  More than just a few pieces of this puzzle fit together.

The only thing I’m not sure about is that both my knees are affected now equally, even though it all started with my left knee shortly after my initial injury/swelling incident in my left leg. Some searches indicate this could also be reactive arthritis. Regardless of the name, I’m going to pursue further the possibility that bacteria may be the cause of my inflammation. After my blood tested positive for strep, the doc gave me antibiotics and a short dose of Prednisone. That week I felt so good I wanted to run again. Both knees were almost back to normal and almost all swelling resided. A couple weeks later they are once again swollen and painful however. I think the steroid may have had something to do with my short relapse, but I’m continuing to investigate. I’m now regularily taking probiotics as well. We’ll see what the new rheumatologist has to say in a couple weeks. For now I have renewed hope.