Monday, May 12, 2008

My RA/PRA diagnosis

This blog is mainly about low carb eating and living what I consider to be a truly healthful lifestyle. I also (since it's mine and I make the decisions) posted a few times on political issues and other topics unrelated (seemingly at least) to low carb. This is one of those posts. I'm posting thing for several reasons. First off, I feel like have almost have an obligation to my readers (there aren't many of you, but you seem to be faithful) to explain what's been going on in my life and preventing me from posting as much as I'd like.

There are many other reasons for this post, including wanting to get some links out there for people that may stumble on this. I have found online support extremely important for me since I started following a lob carb lifestyle. I only have 1 close friend and no family near me as I live in NC and they all live in New England, about 700 miles away. Finding the online support I have found with low carb makes me believe that this can be helpful for all kinds of issues.

About two to two and a half years ago I started having trouble with joints being very painful. There were times my ring finder on my left hand would ache, then a day later that was fine and my right shoulder would hurt. A few days later it would be my right ankle, or my left knee, or my left ankle....or my toes, or shoulders, hips, etc. Each time the pain would be moderate to severe, but only last for a day, maybe a day and a half. There were times when the pain seemed to travel from one joint to the next, other times it would go away and I'd be fine for weeks. At this point there was never any redness, swelling, or signs of inflammation, just pain (5-8 on a scale of 10).

One day my right foot started bothering me....the outer ankle area. It rapidly progressed to the point where I had trouble walking. I slept little that night and had a lot of trouble just getting to the bathroom. I had a Percocette, so I took it and was able to sleep, but the pain was constant. The next day I went to Urgent care (didn't have a Primary Care doctor, PCP, at that time) and when I got there, discovered the ankle was now red, hot and swollen, very swollen. The first doc told me it was gout, then the second doc (his supervisor) decided it was just inflammation from an injury I didn't realize I'd had and it should be fine in a few days. That night the pain went away almost as quickly as it came on. The next day I was able to finally get an appointment with a new PCP, but still had to wait a couple of months. During that time, the joint pains continued to come and go.

The worst is the shoulders....did you know it's tough to move without moving your shoulders? The wrist and hand isn't good, typing, getting dressed is difficult when every movement hurts. Eventually I started seeing more and more signs of obvious inflammation. I'd wake up and my right index finger would be swollen to almost twice it's size. I'd be fine and out of the blue my shoulder would start hurting, eventually getting to the point of tears. I had no idea what was going on, but of course started to look up symptoms online, having Rheumatoid in the back of my mind, but finding what I could to "prove" that I didn't have RA! RA hits joints on both sides of the body....some of my joints hurt on both sides, but hardly ever at the same time....and often only the joint on one side would hurt.

Well, eventually I had my appointment with my PC, but of course had no symptoms that day. I told him about it and he sounded concerned, but didn't know what it was. He told me to call and try to come back if I had any obvious signs of inflammation. I did, about 2 weeks later. When I went in with symptoms, he immediately told me I needed to see a specialist, had a bunch of blood drawn and set up an appointment with a Rheumatologist.

I went to see the Rheumatologist, who had my blood work and was told I had an autoimmune disease, Palindromic Rheumatoid Arthritis. The "rheumy" explained that PRA moves from joint to joint, sometimes shows signs of inflammation but sometimes doesn't, and comes and goes erratically. Wow! That was exactly what I had! He also explained that, like RA, they really didn't know the cause, so they treat it like RA and sometimes get good results. He also ordered more blood work, including a second RA factor, and added a few more tests.

When I went back to see him a couple of months later, he ordered Plaquenil for me, but I was unable to tolerate it. In January I finally called and got an early appointment and when I saw the doc I asked for something else, as well as some pain medication. I was prescribed Doxycycline and Oxycodone. I filled both prescriptions January 18th and started taking the Doxy that night. Over the next few weeks, things didn't change, pains came and went, sometimes swelling, but mostly not. Then the pain got more severe, more frequent, and lasting longer in each joint. And then after a few weeks"intestinal side effects" kicked in. Oh man, I felt like I'd been on a bender....and I don't even drink very often (um, like 2-3 times a year!). Eventually I figured out it was the Doxy and stopped taking it. Apparently this stuff destroys a good amount of the "good" bacteria that live in our guts and you need to take probiotics on a regular basis to keep from having side effects.

Right around this time I found a couple of sites about RA and PRA that have information about autoimmune diseases as well as support forums. The sites aren't "official" sites, but are set up by people that are themselves living with one of more of these diseases. All of the "official" sites have the same info. If you go to Web MD or Prevention, or any of the RA organization sites you basically see the same information. There is almost no information about natural, nutritional, or alternative treatments. Antibiotic treatment is apparently not widely accepted, but being found to have excellent results in some people.

Eventually, with the help of probiotics, and the wonderful people on the support boards, I was able to tolerate the antibiotic....somewhat. I still have to stop it from time to time, but all in all I'm doing well with it. Now, I don't know if it's working or can take 3-6 months or more before you know if it's working or not. The beginning of March I gave in and asked (begged) my doc for steroids and that has helped a lot.....but it's also now wearing off and the symptoms are coming back.

The good thing about having PR is that there usually isn't any joint damage like you see with RA. The bad thing is the degree of pain! I'm told that PR pain is worse than any other....and I sure won't argue with that. I cannot believe how much this can hurt!!

So...that's where I am now, and what I've been going through the past few months. Right now I have sore joints and occasionally one will flare up to the point where I want to take a pain med. I am trying to not take them unless I have no choice.....but that's not always possible. I'm still taking the antibiotic, and still hoping it is helping. I imagine when I see my doc this week he'll order more blood work, and hopefully that will show an improvement.

I want to post a couple of sites for those with RA, PR and other auto-immune (AI) diseases:
International Palindromic Rheumatism Society: An excellent site that has been created by a man with PR. There is a ton of info on there and even a support forum.
Tender joints R.A.I.S.E.D. (Rheumatoid Arthritis Information, Support, & Educated Determination): a forum for those with various AI diseases.