First of all, let's all get something straight right off the bat - this Sandy is a male. Not a usual name for males, but nonetheless.
Now, on to my story. Here is how it happened:
I have always had a problem with dandruff. Ever since I was in college I have had to use some form of OTC dandruff control shampoo, like millions of other Americans. In the early 90's, my dandruff started getting worse, to the point that it could no longer be effectively treated with OTC medicated shampoos. Worse, it changed physically - instead of flakes, it took the form of silvery scales. I felt I was transforming into some form of mutant fish-man.
I finally went to see a dermatologist in 1994. He diagnosed my condition as psoriasis, and prescribed a mild ointment and medicated shampoo. These did not work very well, so several weeks later he prescribed Temovate, a topical steroid in liquid form. This controlled my scalp psoriasis very well, as long as I took it. But in late 1994, the psoriasis started spreading to other parts of my body - legs, arms, and trunk. He prescribed Temovate ointment, which worked well again. But with all topical steroids, I noticed that as soon as the prescription ran out, the symptoms returned within days. This was a frustrating experience.
Then, in early 1995 a new dimension was added to my disease. I jammed a finger in February, and it never healed - the joint remained stiff and hard to bend. In April, I noticed my ankles were getting very sore. I went to a doctor, who said I only needed some arch-support shoes, and prescribed a nonsteroidal anti-inflammatory (NSAID), Feldene, to deal with the pain and swelling. One pair of new shoes and one prescription of Feldene later, my ankles were fine. But the finger wasn't getting any better.
By the summer of 1995, I noticed I was getting sore in several more places - my hips, neck, and shoulders seemed to be sore all the time, and by the end of summer my ankles were sore again. And then there was that finger joint, still stiff. I was taking Motrin every day, eight to 12 pills per day, to deal with the pain. My normal sarcastic sense of humor was being dulled by the constant pain, and replaced by irritability.
I went back to my dermatologist to discuss where we should go with my psoriasis treatment, and happened to mention my pain symptoms. He said I might have a form of arthritis related to my psoriasis, called PSORIATIC ARTHRITIS, which I had never heard of before. Until now I had not considered that the pain in the different locations of my body might be related - I thought my stiff neck was from sleeping wrong, my sore ankles from bad shoes, etc. Deep down, I knew my doctor was onto something - something I didn't like the sound of.
He referred me to a local rheumatologist, who diagnosed me as having psoriatic arthritis pretty much on the spot. He told me there were four drugs that I could try - azulfidine, plaquenil, gold, and methotrexate. He said azulfidine was probably safe enough yet strong enough for my condition, so he prescribed it for me, along with an NSAID, Naprosyn. I left that day with two prescriptions in hand, and a new, grim outlook on my future.
Understand that at this point, I was pretty devastated. I knew very little about arthritis, but there was one thing I DID know - there was no cure. I had seen books and magazines devoted to teaching people how to cope with arthritis, and I knew all that was in store for me. The thought of living a life of constant pain and losing the use of various parts of my body was too upsetting to dwell upon. I have always been physically strong - I played football in high school and have lifted weights all my life. Before getting arthritis, I was a strong as I have ever been. I was able to lift over 400 lbs. in the bench press. But now, the pain in my shoulders made it impossible to lift weights, and the pain in my hips and ankles eliminated the joy in bicycling, tennis, and just about any other outdoor activity. My strength was leaving me, and I knew I would eventually feel weak and helpless.
But the thing that upset me the most: I knew that I would eventually lose the ability to play guitar. I am a solid, accomplished player, and have devoted much of my life to learning, practicing, and performing for others. The guitar is part of me, like an arm or a leg. It is my main creative outlet, and I could not bear to think of losing that ability. I was in a band at the time, and we were playing pretty regularly. But already, my jammed finger impeded my playing. How would I be able to cope when it got worse?
As I started the azulfidine, I learned as much as I could about my options for treatment. Gold sounded like a painful, dangerous option. Plaquenil sounded safe, but not very effective. Methotrexate, though dangerous, sounded the most effective of all, and was also used to treat psoriasis, so I thought it would be my best option. But I agreed to give azulfidine a try.
Unfortunately (or fortunately as the case may be), I had to stop taking azulfidine within about three months. I suffered from a most irritating side effect - it completely eliminated my sense of taste! I suffered through my birthday and Thankgiving in November, 1995, with no sense of taste. In December, my doctor took me off azulfidine and put me on plaquenil. I asked about methotrexate, but he said it was not his preference to move on to such a strong drug without giving plaquenil a try. We also tried another NSAID, Indocin, as the naprosyn wasn't working very well.
By then, the arthritis had taken its toll on my guitar playing, to the point that I had to give up the band. My hands weren't the only problem now. I would be on my feet performing for hours at a time, long into the night, which would make me incredibly sore and stiff the next day. Eventually it got the best of me.
I spent the next year on plaquenil (which was the trial period to test its effectiveness, according to my doctor). The Indocin was very hard on my stomach, so I also had to take Cytotec to keep from developing ulcers. During that year, several more of my finger joints became inflamed. My doctor gave me some cortisone shots in my original jammed finger and in my thumb - a most painful experience. I noticed that whenever I would hurt myself in a joint, that joint would be very slow to heal and would become inflamed. My right wrist suffered that experience. I had become convinced that Methotrexate was the drug for me. In fact, I sought a second opinion from a world-famous dermatologist from Johns Hopkins, who said that he would put me on MTX if the plaquenil didn't work.
Then, something happened that would change my outlook on arthritis treatment and suggest a new course for my own. As I was nearing the end of my plaquenil-Indocin-Cytotec year, I discovered the usenet, the section of the internet that deals with topical newsgroups. I found a newsgroup devoted to arthritis and began to post questions and read others' experiences. I found it enlightening and learned much.
One day I received a mail from someone who had read a posting of mine. This person said that I should consider antibiotics, and referred me to a website. I had never heard of using antibiotics to treat arthritis - my doctor had never mentioned it. But my curiousity was piqued.
I visited the website and learned about the pioneering work of Thomas McPherson Brown and the group of antibiotics patients called The Road Back Foundation (RBF). I ordered Scammell's "The Arthritis Breakthrough" and absorbed it in one reading. I thought I was onto something. I subscribed to a mailing list that dealt with antibiotics in arthritis and learned a lot from patients who had used antibiotics successfully for years. Here was a group of people who spoke of hope, some of whom had actually gone into remission, who actually referred to being 'cured,' and who, strangely enough, weren't trying to sell anything! I had already decided that plaquenil was useless, but now I began to believe that my earlier faith in MTX was misplaced. It was nearing time for my next appointment, so I decided I would follow the recommendations of the website and ask my doctor to read the protocol and prescribe me Minocin.
Surprisingly, he agreed to try it, but said that he had tried it before with poor results. He was familiar with Dr. Brown and the MIRA study, and agreed to prescribe Minocin, but did not want to use IV clindamycin, which the RBF recommended. I started taking the oral Minocin, 200 mg M-W-F, in February 1997. The fact that he was willing to try Minocin encouraged me, but the fact that he was just as UNwilling to try clindamycin frustrated me to no end. What was I to do if the Minocin alone didn't help?
Then, in a moment of clarity, I made a decision that would change the course of my disease. I decided I did not want to have to train my doctor. I wanted one who knew what he was doing. I queried the antibiotics mailing list and got a few alternatives near my area. Without hestitation, I fired my original doctor in favor of one who had years experience with the antibiotics protocol - Dr. Phillip Kempf in Arlington, VA. He had inherited Dr. Brown's practice and still treated many of Dr. Brown's patients. He was a purely mainstream rheumatologist, prescribing all sorts of arthritis drugs. But he was one of the rare doctors who had seen that the potential benefits of antibiotics far outweighed the risks of taking them. Better yet, he prescribed antibiotics in close comformance with the RBF protocol.
Dr. Kempf, at my request, put me on the full antibiotics therapy. I continued takin oral Minocin M-W-F, 200 mg/day. I added clindamycin IVs, taked daily for one week every three months. I also switched to a newer NSAID, Relafen, which was easier on my stomach. My first week of IVs was in April 1997. In six months he would evaluate my progress, and would recommend I try something else if the antibiotics wasn't working. I found that I had better success over time if I stuck to a literal 'every other day' treatment instead of the recommended 'M-W-F' treatment.
About the same time, one of the members of the mailing list told us of a product called Skin-Cap, which was said to eliminate all symptoms of psoriasis. As I had exhausted my alternatives, I ordered a few cans to see what would happen. What happened was totally amazing - Skin Cap eliminated my psoriasis symptoms within two weeks, and after a month I was able to stop treatment and the symptoms didn't return!! This was totally unlike any other topical treatment I had before. I began to systematically eliminate all patches of psoriasis.
When I started antibiotics In February, my SED rate was in the 60s. By my second week of IV treatments in July, I had improved greatly. My SED rate was down to 24, and morning stiffness was greatly reduced. But most important - my jammed, stiff finger had almost totally healed! I could bend it once again, and it no longer impeded my guitar playing. The other joints had improved as well. I began to see light at the end of the tunnel.
Then, I experienced a major setback on the psoriasis front. One day in the early fall, I was reading postings in a psoriasis support newsgroup, to the effect that the FDA was investigating Skin Cap. Some laboratory reports indicated that it contained some ingredients not listed on the can, one of which was a steroid, my old friend Temovate! There was a debate raging in the newsgroup between those that felt betrayed and those that did not care WHAT was in Skin Cap, so long as it worked (I found myself siding with the latter group). At any rate, I could tell that something was going to happen with the FDA, and I decided to take a pre-emptive measure. I ordered a large supply of Skin Cap - and within a week after I received the order, the FDA banned its import and eventually its sale in the US. To this day, the jury is out on the truth regarding the content and the future of the product, but I still have a few cans left in the meantime to tide me over. But I cannot recommend anyone else use this product. I do so under full knowledge of all potential risks and side effects, but the most I could say to anyone curious about it is to read up as much as you can on what has transpired before you choose to try it.
I did not return to Dr. Kempf's office for another week of IVs until late January 1998. By then, my SED rate was down to 11, my pain had virtually disappeared, and I had reduced my Relafen dosage from 1000 mg/day to 500mg/every other day. I no longer thought of my discomfort every waking hour - I hardly thought of it at all!! My joint pain in my shoulders had subsided enough so that I could resume my weightlifting regimen - I was becoming strong again. My ankles and hips were pain-free, which made cardiovascular workouts almost enjoyable. I no longer woke up stiff, and slept much better overall. In short - my life had returned to the way it was before arthritis struck. I have even joined another band, and look forward to flailing at the guitar with a renewed gusto not felt in months.
Dr. Kempf has reduced my dosage of Minocin to 50 mg/day (I think I will take it 100 mg every other day, since I am used to this regimen). He also said I probably don't need anymore IVs, which is very nice, as unnecessary needles in the hand should be avoided whenever possible, in my opinion. I feel as if I am now on the 'glide path' to full remission.
Throughout my ordeal, I have been surrounded by supportive people: family and friends who pray for me, and an amazing group of patients in The Road Back Foundation and the antibiotics mailing list who help me every day of my treatment with facts, stories, and support. My future will be to continue the treatment until I reach full remission, and to help guide those considering the treatment to those that helped me, and maybe to be a bit of help myself along the way.
When I started learning about antibiotics, I read the stories of many people who, by the time they had discovered antibiotics, had suffered from arthritis for years, who had tried all the toxic drugs to no avail, who had to eventually resort to surgery to replace damaged joints. They tried antibiotics without the benefit of clinical studies - they just took a leap of faith, trusting in the wisdom of Dr. Brown.
I consider myself amongst the "Second Wave" of antibiotics patients - those that discovered the clinical trials and read the success stories early enough to avoid the toxic drugs and the irreversible joint damage. I consider this the future of arthritis treatment. Now that clinical trial support their use, antibiotics will be prescribed by more and more doctors. Perhaps doctors will eventually find antibiotics better than Minocin/clindamycin to treat arthritis. It is my wish that someday, all arthritis sufferers will be able to follow the same path I have travelled.
UPDATE - April 2, 2001
It has been almost three years since I first posted my story to this website. Since then, dozens of people have emailed me, asking pretty much the same thing - "How are you doing NOW???"
So, I felt it was time to update my story with current information.
As you can see above, when I wrote my story in early '98, I was still on oral Minocin and Relafen, but had stopped the IV clindamycin. I stopped taking Relafen altogether in the early summer of that year, and was off Minocin by September. That's right - totally off all medications by September of '98. At that time, I was symptom-free, and felt no need to continue.
Since then, I have experienced a few minor flareups. These have been controlled with oral Minocin. Right now, I have a flareup in my left index finger, which I am treating with Minocin and Relafen.
Another question I get asked a lot is: "How do I convince my doctor to try antibiotics?"
This is a very tricky question, because not all doctors are open to new things, and even less want to be 'educated' by patients. I think that first, you need to convince YOURSELF that you want to try antibiotics, educate yourself as much as possible on this website, and join the mailing list to clear up any things that might confuse you. Once you are well-versed, I would then asked my CURRENT doctor if he is willing to try the FULL protocol - Minocin, NSAIDs, and Clindamycin. Some are willing to try Minocin and NSAIDs only. If your doctor is unwilling to try Clindamycin, I recommend IMMEDIATELY seeking out a doctor who will. Query the mailing list and find one in your general geographic area. This is one area I am very firm on - I do not believe in beating your head against the wall, trying to train a doctor who will not be trained. Choose the path of least resistance - the alternative is not worth the frustration.
The other common question I get is: "What about your psoriasis?"
Unfortunately, I do not have any good news on this front. Although my arthritis symptoms went away, my psoriasis never really did, despite the success I had with Skin Cap. Once Skin Cap went off the market, I bought it directly from Spain, but it was no longer effective due to an apparent change in formula. Several of my lesions stayed healed for two years, but gradually they all came back.
I have educated myself further, and corresponded with several people who also suffered from psoriasis. Here are a few things I have learned:
1. Psoriasis is triggered by many things. No one treatment will work for everyone.
2. Here is a partial list of things that have caused psoriasis in some people (who were able to treat it successfully once they identified the cause): yeast (candida) infection, E. coli infection, deficiency in folic acid and vitamin B-12, strep infection, food allergy.
I found a doctor of internal medicine who was willing to try different treatments with me. First, we tested for various infections. I had no yeast problems, but did have a rather high amount of bad E. Coli. We treated that with an antibiotic, but the psoriasis stayed.
I also went on a low-carb diet and noticed that my psoriasis symptoms got worse One colleague of his suggested I try an omega 3 fatty acid supplement. I did, but it didn't make my psoriasis any better.
This leads us to believe that I have a food sensitivity or allergy. My next step is to get tested. The test my doctor recommends is called the Elisa-Act test. It is administered by one laboratory in Northern Virginia, and costs over $1000. I am still considering this, because my health care won't pick up the expense.
In the meantime, my doctor found a pharmacy that makes the original Skin Cap formula right on the premises, so I have been treating my lesions successfully with that.
I will update again once I have decided on the Elisa-Act test.
You can reach me at firstname.lastname@example.org Beware of my anti-spam trap!