Palindromic RA

Lyn 2007 AU

In 1987, at the age of 35, I developed intermittent, sudden, searing pain in my wrists, sometimes one, sometimes both. The wrist and hands would become excruciatingly painful to move and very tender to touch. The pain would seem to emanate from a variety of points, sometimes from the front, sometimes the back. It would then build to a crescendo over about 3 days. It felt as if the tendons were being tightened until snapping point and my hand(s) would be forced into a claw. I would be unable to straighten the fingers without screaming with pain. The pain was at its worst at night and I would sometimes lie awake crying with pain, trying to nurse my painful “paws” and not move a single digit. Once the crescendo of pain had been reached, it would start to subside over the next 24 hours or so and then everything would be back to normal.

My GP sent me to a rheumatologist who took some tests, which came back negative. He determined that my problems were psychological. After further tests for Carpal Tunnel Syndrome (also negative) I just let the whole thing go for a while. After several more attacks, I saw a 2nd rheumy who told me my blood tests had changed slightly and the Rheumatoid Factor was now borderline positive. This, coupled with the intermittent nature of the attacks, no symptoms in between, no joint damage and the often single joint involvement all led him to make a diagnosis of Palindromic Rheumatism, something not widely known about. It is, in fact, one of the rarest 500 diseases on the planet. He told me that it’s called Palindromic because it comes and goes with no residual joint damage and that it was named after the term ‘palindrome’ – which originally comes from the Greek word meaning “to rush back” and, in modern English, is a word that’s spelt the same backwards as forwards ( such as madam, mom, pop). I went home not entirely satisfied. It wasn’t my joints that seemed to hurt; it felt more like tendons, even though there would often be heat and sometimes a little redness close to the joint, but not always. He prescribed me an NSAID and some painkillers. And that seemed to be that. Except that the NSAID didn’t have any effect. The attacks would just run their painful course, as before. And the painkiller simply took the edge off the pain

Two years later, the attacks started to migrate to other joints all round my body. And they would come on really suddenly – I’d sometimes seize up in the space of a few minutes. I could be in the middle of dinner and suddenly I’d not be able to move my shoulder, lift my arm or sometimes even open my mouth to finish eating. The pain was sudden, acute and would just build, this time over just a few minutes. When this happened, wherever I was, I’d just try to get home as quickly as possible. Once home, I’d just collapse into bed, but often couldn’t stay there. The pressure of lying down would just send searing pain through my body and trying to turn in bed was impossible. I’d spend hours trying to get into a position that worked, sometimes trying a bolster to try to raise my arm to a position where it wouldn’t move but nothing seemed to work.

I saw yet another rheumy and was told my RF was now very positive (no figures given though) and that I had a 70% chance of developing full-blown RA. He told me: “This is not a minor disease, you know. Its a great deal more serious than people imagine. In fact, most people with severe RA are dead within 10 years.”

I was 37 and what a rosy future he painted for me!!!! But somehow it never sank into my being. I didn’t walk out or even feel outraged. I just didn’t buy it. We tried a few different drugs. Nothing even touched the sides. He eventually gave me a prescription for 500mg enteric-coated sulfasalazine and said this was a DMARD that had been around for 40 or so years and was on the back burner these days, but that it might help me, because nothing else seemed to be. He told me to start with one tablet a day, working up to 4, evenly spaced out. He told me it would probably take a few months to work so to just use panadeine forte when necessary for pain relief in the meantime.

The side effects I had on the sulfasalazine were an ulcerated tongue, which lasted about six months, orangey urine and very loose bowel movements, both of which lasted for as long as I was on it. After about six months, the PR attacks became less frequent. At about the 12 month mark, they stopped. We reduced my dose gradually to one a day. After two years, with no symptoms at all, I decided to take myself off the drug. I’d heard that it can have some pretty major long-term side effects and I didn’t want to be on it when I had no symptoms at all. The rheumy wasn’t very pleased with me but reluctantly accepted my decision. He told me to take 4 tablets if symptoms ever came back.

I now believe that it was the anti-bacterial properties of this drug (the sulfapyridine) that worked for me, because it stopped the attacks happening altogether. I didn’t require the anti-inflammatory portion (the 5-amino salicylic acid) because I had no inflammation. The trouble is, the drug is not a very benign one and I really didn’t want to be on it for the rest of my life, risking liver damage, decreased blood count or scarring of the lungs. However, it certainly helped me and, for the next 5 years, I was symptom-free.

Then flares started to return occasionally. They were of shorter duration than before and a little different. They would include stiffness in my cervical spine and/or back of my head, a painful frozen shoulder, painful knee and sometimes a painful and swollen thumb. One of the glands in my neck would also sometimes become enlarged. I would occasionally take 4 sulfasalazine tablets as per the doctor’s instructions, but found they didn’t give any relief. So I’d take a panadeine forte to alleviate pain and allow me to sleep. I really didn’t want to go back on to the DMARD, because the flares were nothing like as bad as before. So I settled for pain relief when necessary and put up with fatigue. The joint flares were very occasional. The fatigue lasted longer, but had become a way of life.

One day in 2001, I casually googled the words ‘palindromic rheumatism’ and found a testimonial by a woman called Mary Jean on the site. She’d been diagnosed with PRA, which had become full-blown RA. After going to hell and back with pain and with toxic drugs, she’d discovered another form of treatment called Antibiotic Therapy which had put her into remission and had given her life back to her. I was intrigued, because remission wasn’t supposed to be possible. I started to reflect on my own infection history:

  • Ear infections when a toddler
  • Tonsils and adenoids removed at age 5 (recurring tonsillitis)
  • Bronchial Pneumonia at age 13 + 2 bouts bronchitis the following year
  • Acute sinus infection 2 years running in late 1980’s.
  • Urinary tract infection (moved up to kidneys) late 1980’s. I think this just preceded my first PR symptoms.
  • Lymph gland in neck (left side) often swells when feeling “under par”

It made sense to think that one or even a combination of these could have caused, triggered or been part of the rheumatoid condition. In fact, I remember my Mother telling me that she had pneumonia very badly as a child of 4 and had been hospitalised for 9 months. Could this have been the start of her infection? I knew that her palindromic rheumatism started just after she gave birth to me. Was that stressful hormonal upheaval what set hers off? The doctors couldn’t work it out back then; Palindromic Rheumatism wasn’t a known condition. It was a complete mystery to everyone. After her initial, crippling attack, it stayed with her as intermittent painful episodes until her mid 60’s, when the RA suddenly went wild. Eventually, she was put on a cocktail of methotrexate and prednisone, which she is on to this day. As I write this, my Mother’s spine is crumbling, her hip replacement has had to be re-done 3 times because the hip joint just keeps “falling out” and she is unable to be mobile at all now without a wheelchair or mobility scooter. It’s my belief that it is the long-term toxic drugs that have caused this. She doesn’t see the connection and wont discuss antibiotic therapy with me. So I have had to respect her choices. I just haven’t made them mine.

After reading Mary Jean’s story, I started to research some more. I found the website of The Road Back Foundation, dedicated to carrying on the pioneering work of a Dr Thomas McPherson Brown who’d first made the infection connection in rheumatoid disease when he was conducting medical research at the Rockefeller Institute in New York in 1939! Even though later an eminent figure in Rheumatology, once cortisone had been discovered, people stopped listening to his infection theories. Except, of course, for the thousands of people he’d put into remission using tetracyclines. It all made a great deal of sense to me. I’d developed pretty good antennae for bulls***, of which there is plenty on the internet. And, at the same time, I know that it’s the most wonderful tool when used wisely. This was like striking gold. The information made complete and utter sense to me and was underpinned by compelling science. I sent off for a book called The New Arthritis Breakthrough by medical writer Henry Scammell, which incorporated Dr Brown’s original text The Road Back. I read it from cover to cover in one night! What a revelation! And something inside me knew that this made so much more sense than anything I’d been told by anyone practising in the field of rheumatology thus far. At this time, I had few symptoms but determined that, if my condition flared badly again, I’d do something about it. I’d start on minocycline, the very benign tetracycline derivative that was now recommended as the best to attack and kill off the microbes hiding in the fluid of the joints.

My condition did flare again on July 3rd 2003, – an agonising attack that included a stiff neck, pain in every joint in my body, lymph gland in my neck swollen and chills and a fever. On the Monday, I went to see my (newer) GP and told him about my history and what I wanted to do about it. I tried to give him the Road Back Physicians Packet to read but he just smiled and said he had too many other irons in the fire. He suggested he refer me to a rheumy, so I gave him the name of one on the Road Back list. When I got in to see her, she told me that her original speciality was epidemiology and she absolutely believed in the infectious origin of RA, Lupus and Scleroderma. However, she did NOT believe that Antibiotic Therapy worked and wanted me to start plaquenil. When I said no, I wanted to go on minocycline, she said that was my choice but that she expected I’d change my mind later. I went back to my GP, told him that I didn’t believe Dr E would be of value to me and that, if he’d support me, I’d case manage myself as long as he would write the prescription. He agreed, mostly I believe because minocycline is such a benign drug.

On 7th July 2003, I started to take Minocycline – the Sigma branded version (Minomycin) but not the pelletted one, because that’s not available in Australia. I pulse dosed it (as I’d read in the literature is the best way for rheumatoid diseases), 100mg Monday, Wednesday Friday. I also used Panadeine Forte as required for pain – the NSAIDS were completely ineffectual for me.

My Herx

I was well informed about what to expect and waited for the Jarisch-Herxheimer response, the apparent worsening of symptoms which can seem like a flare but that is actually caused by the body’s inflammatory response to cell die-off. My flare had already subsided. And then nothing else happened that first week. I waited in hope.

Week 2
Suddenly, I started to experience transient and migrating joint pain all over my body. This had never happened all at once before. And it seemed to be happening in a very structured way, moving from the top to the bottom of me. I started to feel very fatigued and also slightly nauseous. Yet I was overjoyed. This must be the herx starting!

Week 3
The joint pain abruptly stopped and I just felt vaguely nauseous. On the 4th day, my neck and left shoulder became stiff and the shoulder froze on the 5th night, but it simply unfroze very suddenly the next day. On the last day of that week, I started to feel an ache in the kidney region and I developed a chesty cough.

Week 4
The ache in my kidneys continued and increased in intensity and then seemed to move up to the liver region. I got a little spooked by this and posted on the RoadBack Board for some input. An experienced AP’er kindly posted back that this was all part of the herx and to drink some cranberry juice. I bought some organic juice that day, drank some before going to bed – and the ache had disappeared by the next morning and it never returned. In the evenings, I experienced mild pain in a lot of joints, again transitory and migrating. One morning I awoke to notice that a pea sized nodule had appeared at the base of my right forefinger and it was tender to touch.

Week 5
I suddenly noticed an increase in my energy levels. The mild joint pain continued for the first couple of days, then disappeared. On the Sunday, I awoke with pain in my right knee which was a little red and swollen. It lasted about 3 hours and then simply went away. The nodule in my right forefinger also seemed to be getting smaller.

Week 6
The joint pain was diminishing in intensity by the day as my energy levels continued to increase. In fact, I had more energy than I’d had for some years.

This was the last week that I remembered feeling nauseous at all and the migrating joint pain had gone by the end of the week.

Suddenly there were no more symptoms. I was ecstatic! And I couldn’t wait to get my blood work back.

My Blood work also herxed
A couple of weeks later, I went back to my G.P. feeling wonderful and very excited. Then I got the results of my blood tests. My Rheumatoid Factor had increased, up from 511 to 692! My CRP and ESR were both still in normal range (as they had always been), but I now had a positive ANA result which was speckled. I came down with a crash. What was going on??

As soon as I got home, I posted on the Road Back Board asking for some help. As before, I was soothed by some wonderfully calming responses. It is quite common for blood work to become worse at the beginning of AP, my ANA was nothing to be concerned about. It was all almost certainly part of the Herx. I now felt good – and was told feeling good was what I should concentrate on for the time being. The rest would come later. I was so relieved. I hadn’t realised the blood work would herx along with the rest of me.

5 months later, I went back to my GP for another round of blood work and another prescription for minocycline. This time, I was truly ecstatic. My ESR and CRP had fallen to even lower levels. And my Rheumatoid Factor had plummeted to 311 – falling by 381 points in just 5 months. Finally, my blood work was following the way I felt, which was wonderful!

Late 2003 – 2007
I have only experienced one “flare” since mid 2003 and none at all in the last 18 months. Very occasionally there’ll be very minor joint pain, but it doesn’t last very long and the pain is nothing like used to be.

Now, in mid 2007, I feel very good and can say, without a doubt, that 100mg minocycline, pulse dosed Monday, Wednesday and Friday has worked in text-book fashion for me. Those nights of sitting up in a chair with tears rolling down my face seem a very distant memory. All-in-all, I consider my journey away from rheumatoid disease still a work in progress, but a pretty healthy and, most importantly, pain-free one. The antibiotic protocol and the work and legacy of Dr Brown has given me a better quality of life at 55 than I had at 35. And it has given me the unshakeable belief that there ARE answers if we care to seek them – using patience, discrimination and wisdom. And, most of all, if we make a commitment to educate ourselves and to case-manage our own healing, finding and using expertise that makes sense to us, rather than unquestioningly putting our wellbeing and healing in the hands of those who will not step (or even look) outside the square of medical orthodoxy.

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