First, a caveat: this is a long, detailed, possibly boring story! But I wanted to include everything that might possibly be relevant. When I was desperate and searching for answers, the stories that helped me most were the ones that were the most detailed because I could find parallels to my own situation. I had many of those "Yes!" and "Ah ha!" moments while reading other people's stories. So, while the writer in me would be inclined to edit about half of this out, this is not literature. Instead, it's a narrative in which I hope others will be able to find clues that will help them piece together the genesis and evolution of their own illnesses and map out a strategy. (I was clueless much too long.)
In October of 1996 (I was 41 years old, healthy, happily married, two children) I got the first clue that something was not right. I know exactly the hour and the day because I was attending my mother-in-law's funeral. All during the service I had been vaguely aware of a dull ache in my right shoulder. Now, at the cemetery, my arm had frozen up and moving it was extraordinarily painful. I was barely able to open the car door.
It had been a very stressful week. As my husband's father was deceased and his only brother suffers from Down syndrome, it fell to us to make all of the arrangements. Anyone who has had to lay aside shock and grief to carry out this responsibility knows what that is like. I was trying to think what I might have done to my arm when I remembered - we'd left our four year old with friends a couple of days before while we traveled to the city to pick out the casket and arrange for the viewing. While we were gone he got sick and threw up; when we returned I scooped him up and held him on my hip, comforting him while I commiserated with my friend. He was really too big to be toted around like a toddler. I must have pulled a muscle doing that, I thought. The pain was pretty intense for a day or so; in a couple of days the arm was fine. That's that, I thought. Then I got a dull ache in my LEFT shoulder.
Now I was really stumped. There was nothing I could connect this pain to, and it followed the same pattern as the pain in the right shoulder had - dull ache, increasing pain, lack of mobility. Then it subsided over about a 48 hour period. For several weeks I had no further problems.
In November we were responsible for the first time for caring for my husband's brother for a week over Thanksgiving. This was a responsibility we could not shirk, for a number of complex reasons. But we were in the process of putting an addition on our small home, and there was no place for him to sleep except the sofa bed in the living room. He is low functioning, nearly deaf, has a difficult time communicating, and requires a lot of supervision. While he was here the furnace broke (in the middle of a cold snap), then BOTH our cars broke down at the same time. We were also dealing with the building inspectors and the contractors who were working on the addition. I got a respiratory virus which further diminished my capacity to cope with the stress. But we survived the week; my brother-in-law got on the plane and we resolved the other crises one by one. Then the pain in my shoulder returned with a vengeance. I remember sitting on the sofa weeping as it reached an almost unbearable crescendo. The heating pad had no effect, nor did ice. Neither did Tylenol or ibuprofen.
Over the next eight months or so I had many of these attacks in almost every joint - shoulders, elbows, wrists, fingers, hips, knees, feet. It would generally start as a dull ache, build until I was in considerable pain and had no mobility in the affected joint, gradually subside and disappear completely in 3 or 4 days. Usually there was no swelling or outward sign that anything was wrong, but on two or three occasions the pain was accompanied by swelling and/or a "hot spot" which manifested itself as an area of redness on the skin. (I was actually able to measure the difference in temperature with a forehead thermometer!). Sometimes these episodes followed a period of unusual activity - (I remember a particularly bad episode of swelling in my knees after refinishing the floor) but more often there was nothing I could identify as a possible cause. The pain came out of nowhere and left just as puzzlingly. Sometimes I would be awakened in the night by full blown pain so intense that, if I thought I could end it by cutting off the affected limb, I would have run (or crawled) for a saw.
Between these episodes I was completely normal. When the pain was gone, it was GONE, no trace. It was easy to put off seeing a doctor because of this. We are self-employed with no comprehensive health coverage, and the expense was a primary consideration. I had done some research on my own and concluded that I probably had rheumatoid arthritis. Everything I read led me to believe that a doctor would only tell me what I already knew, give me anti-inflammatories and talk to me about acceptance and pain management strategies. Meanwhile I clung to the hope that, because of the episodic nature of the attacks, I would be among the lucky ones who would experience a spontaneous remission. One of these times it would go away and NEVER come back.
When the attacks first started, I would typically have weeks, sometimes even a month or more, in between episodes. Gradually these periods of respite became fewer and farther between - days, instead of weeks, between flares. Finally, even I could see the handwriting on the wall. It got to where I was afraid to make plans because I didn't know what kind of shape I'd be in on any given day. I was increasingly depressed, tired and irritable even when my joints didn't hurt. My kids were starting to see me as an invalid.
I wasn't sure where to start, so I opened up the phone book and picked out an orthopedic specialist based on an ad that said he treated arthritis. Although I was very specific on the phone about the reason I wanted to make an appointment I didn't learn until I saw the doctor that I was in the wrong place - he only treated extreme cases where there was obvious joint damage. He didn't even bother to examine me (although he didn't mind charging me for the appointment).
A couple of months later I tried again with a GP I had seen once or twice before. He ordered blood tests for a number of conditions (including syphilis, which was never discussed with me. When I got the bill and questioned the charge, the nurse refused at first to tell me what the mystery test was! How bizarre is that?). All the blood work came back normal. The GP was stumped and referred me to a rheumatologist.
The rheumy listened to my story and left the room for a while. When he came back, he told me I had palindromic rheumatism and that it wasn't serious. "It'll probably never get any worse," he told me. "It might even get better." He gave me a prescription for a prophylactic dose of colchicine and a handful of different NSAID samples to try "as needed". Very gradually over the following months I began to notice that I was having fewer acute attacks of joint pain. The doctor interpreted this as improvement - the colchicine was obviously preventing attacks, he said. At the same time, though, I was beginning to notice that the pain was becoming more chronic and settling in my feet. I began to have painful morning stiffness in my feet that made it really hard to negotiate the stairs - I had to go down sideways, VERY slowly, using the railing for support. I couldn't flex my feet without searing pain. These symptoms would generally improve as the morning wore on, but some days they would not. Increasingly, the bottoms of my feet had an odd "burning" sensation, as if they'd been slapped until they stung.
The rheumy was curiously unconcerned when I reported these symptoms. He told me he couldn't see anything wrong with my feet, and it's true they did not look swollen, although they felt swollen inside. A certain amount of morning stiffness is "normal", he told me. He suggested I bounce and rock on my feet to relieve the stiffness! Had he heard me, I wondered? I could barely put weight on my feet in the morning and he wanted me to bounce on them!
In hindsight, I should have emphatically called him on his lack of understanding and sensitivity, but by this time I was also in a fog of depression, fatigue, and a general feeling of hopelessness. I felt powerless and resigned to my condition. Maybe I was just a whiner. A lot of people were a lot worse off than me. The doctor couldn't find anything really wrong with me. Maybe I just needed to re-adjust my expectations of what "normal" was for me.
I struggled on for several months until our next appointment. I took the NSAID samples until they were gone, but they didn't really work any better than ibuprofen, which was considerably cheaper, and the doctor had told me that it was safe to take more ibuprofen than was generally recommended. Ibuprofen took the edge off and allowed me limited mobility on my worst days, but did not significantly reduce the pain. Now the "morning stiffness" was an all day, every day condition. Some of my toes were going numb and staying that way for weeks. And I was SO tired! I never seemed to get enough rest. When I struggled out of bed in the mornings all I could think of was how soon I could crawl back in. It was not unusual for me to lie down for a brief nap and wake up two or three hours later in a fog, still not rested.
I was lucky I didn't have a "regular" job at this time, but I was just getting the bare minimum done as far as our home business was concerned, and getting increasingly behind in everything else. I stopped working on a book I was writing. I no longer volunteered for anything at the elementary school. I had to explain to my teenage daughter that I could not take her shopping because I didn't think I could be on my feet that long. A trip downtown to the art gallery was now unthinkable. I used regularly take long walks by the river. No more. One day I caught myself calculating the years I probably had left if I lived out my allotted "average" lifespan - as much as 40 years or so! A feeling of dread washed over me. I couldn't imagine living the rest of my life like this, and I seemed to be getting progressively worse.
I found a support group for palindromic rheumatism on the internet. Someone suggested that from my description of my symptoms I might be moving into RA. Several other people had the same kinds of problems with their feet. Everybody thought I needed to be more aggressive about getting proper treatment. But when I told the rheumatologist I had been doing research and talking to fellow sufferers on the internet he became visibly annoyed.
"The problem with your feet is NOT inflammatory," he stated flatly. "It has to do with the way you walk. It's not related to the palindromic rheumatism." (Huh? Did it occur to him that I might be walking like that because MY FEET HURT!?)
"I think it IS inflammatory," I countered. He was not happy to be contradicted and became very brusque and defensive. He refused to examine my feet ("I couldn't find anything wrong with them the last time you were here," he said), even when I told him of a lump that I was worried might be a rheumatoid nodule. "You don't have rheumatoid arthritis," he told me dismissively, ending our interview. "You need to see a podiatrist. I don't know what else to tell you."
It's difficult to convey just how angry, depressed, and hopeless I felt after this appointment. So as to leave no stone unturned, I did see a podiatrist. She thought I might have stress fractures (in both feet? That came and went?) and suggested an expensive series of x-rays which I declined. I am not obese, nor do I jog or run - where in the world would I get stress fractures? I had hardly been ON my feet for months!
This was December of 1999. The holidays went by in an awful blur of pain and fatigue. My mom was hospitalized at this time and I remember thinking as I sat there looking at her in her wheelchair that she might be back on her feet soon but it wouldn't be long before I was in her place, permanently. I attended a Christmas party where a sympathetic friend offered me a hydrocodone pill, assuring me that it would knock any pain right out of the ballpark. If it worked, maybe I could get my doctor to prescribe it. It did improve my mood, but it didn't begin to touch the pain.
I was desperate. Another friend mentioned a rheumatologist she had heard of in the next town - no recommendation or any information, just a name. I figured it was as good as picking a name out of the phone book. I picked up the phone and made an appointment for January of 2000.
At this new rheumatologist's office I was given a thorough exam, during which I was encouraged to tell my whole story. Several vials of blood were taken. He said he could feel swelling in my feet even though none was visible, and noticed that some of my fingers were slightly swollen as well. (He wanted to do an MRI to check for joint deterioration in my feet but I protested that without insurance I was unable to pay for it.) Bottom line - my blood work looked normal except for some tests, including the rheumatoid factor test, which would take a little longer to complete. Regardless of the RF results, he told me, "You have rheumatoid arthritis. It's still a fairly mild case, and we caught it relatively early." He was confirming what I had known all along, but somehow hearing it out loud made it concrete. It was not a pleasant moment, and he watched as it sunk in. "This diagnosis doesn't mean what it did even ten years ago," he said reassuringly. "It's very treatable."
We discussed treatment options at this point. He gave me a pamphlet on plaquenil and we talked about the drugs we would "step up" to if the plaquenil didn't work. I had done some reading on all these drugs and I guess my hesitancy was evident. Then he said, rather casually, "There is something else we could try first." Minocycline, he told me, was an antibiotic in the tetracycline family. Nobody knew how or why, but "It sometimes works for some people. And it has the fewest side effects."
I left with a prescription for minocycline and some sample NSAIDs, feeling more positive than I had in the past two years.
The next day my bubble burst. The results of the liver panel were in and they didn't look good - numbers were more than twice as high as normal. I was to take NO medication for a week and come back to be re-tested.
Without the ibuprofen or any NSAIDs, my feet began to swell. By the second day I could not put my shoes on, but it didn't matter because I couldn't walk anyway. I could barely get out of bed and had to slide down the stairs on my rear end. I sat on the sofa all day with my feet propped and ice packs on them. My fingers also began to swell - by the third day the index fingers on both hands were so swollen you couldn't see the joints. I had a screaming headache. "I can't do this for a week," I told my husband.
Back to the rheumatologist, who agreed I needed immediate relief and did a second liver panel on the spot. As the numbers were already starting to come down, we guessed that it was probably the ibuprofen taxing my liver. ("Colchicine can tweak the liver, too," he said.) My heart sank when he told me that, in addition, the earlier tests showed my rheumatoid factor was now positive. The doc prescribed a small dose of prednisone (7mg daily) to get me stabilized, and Vioxx (25 mg daily) because it was "easier on the liver" than some other NSAIDs. He told me to re-start the minocycline (100mg twice daily) as well.
I was not happy about taking prednisone, but within a week I felt better than I had in months. I could actually flex my feet! Energy level was up (artificially, but so what? At that point I was just so grateful) and I was moving around the house with very little pain.
But I didn't want to stay on the prednisone long and the doctor emphatically supported this. Over the next 4 months I gradually dropped the dose to 5mg, then 2mg, then cold turkey. Each time I dropped the dose I had a little flare and a period of about a week before I stabilized. I continued to take the Vioxx and the minocycline.
At about this time (March 2000, to be exact) blood work showed my liver numbers were slowly rising again. The doctor who was covering for my regular rheumy had the nurse call and tell me to stop the minocycline and start plaquenil immediately. "I don't THINK so!" I told her. By this time I had found the rheumatic.org site, read "The New Arthritis Breakthrough," and was feeling pretty militant about continuing the AP (antibiotic protocol). The site and the list were both very helpful and supportive, and I was positive I was on the right course. Group members suggested milk thistle for the liver, so I added that to my daily regimen and continued to take the minocycline and Vioxx as before. I also added acidophilus to clear up a mild yeast infection and replace any "good" bacteria the minocycline might be killing off.
My regular doc agreed that I could stay on the minocycline but that we would re-check the liver frequently. Within 6 - 8 weeks after starting the milk thistle my liver numbers were normal again, and they have stayed there ever since. (The nurse was astonished; the doctor had never heard of milk thistle.)
By summer I was able cut the Vioxx to 12.5 mg daily with no noticible repercussions. By fall I was able to go some days without taking Vioxx at all. By the end of the year 2000 I was off the Vioxx completely.
This summer (2001) I have experimented with reducing the minocycline to 100mg daily, and I seem to be doing fine with no backsliding on this dose. This is currently the ONLY medication I am taking.
So here I am in the fall of 2001. I rarely experience joint pain, and when I do it is almost always in my feet and more like an achy kind of fatigue, as if I'd been standing all day. That searing, unbearable pain that brought me to tears is a distant memory. I don't even have any morning stiffness. My energy level is much improved - although I need a nap most days, I wake rested after about 45 minutes. (Some days, especially if I can sleep in in the mornings, I get through the day without a nap at all.) If this seems like a limitation, I remind myself of the days when I would pass out as if drugged for 2 - 3 hours in the middle of the day, every day, and never, never feel like I got enough sleep. I still struggle with low-grade, chronic depression but have every hope and expectation that this is a primary symptom of my disease, and that it, too, will begin to lift in time.
I can now walk about a 2 - 3 mile stretch without difficulty and have bicycled 20 miles at a time. I try to work out with hand weights on a daily basis. I've gone on some pretty taxing field trips with my son's class in the last year. In short, I am living a close to normal life with a fairly normal activity level and just a few limitations. If this is as good as it's going to get, I can live with it, and with enormous gratitude.
My recovery/remission feels close to miraculous. I hope my story will inspire someone who is as desperate as I once was to try this therapy.
You can reach me at firstname.lastname@example.org