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 either....cooking, 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 the....um..."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 not....it 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.

Weigh In week 5

Well, true to form, at least my latest, no loss again this week. I seem to be loosing every other week. Oh well, at least I didn't gain!


Had a nice surprise this past week. I have google mail, and on there you can set up "alerts" which will send you an email whenever there is a new article, news item or blog about a topic of choice. So naturally, I set one up for low carb! Well, imagine my surprise when I see the name of my blog mentioned, but not in an article I posted! So I follow the link and find a very well written piece about low carb diets. And, near the end of the article, I see my blog listed as "Other Great Resources on this Nutritional Approach"!!! What? Me? MY blog? Cool!!!

Needless to say, I've added Mark's blog to my list of must read blogs! Check it out! His article How to Lose Weight and Keep it off Permanently, is very well written. Mark is "25 years young, Irish and hopelessly addicted to continually improving myself in every area of my life and, in turn, sharing this knowledge with others." Looks like a good site to watch!


Last week, I posted about my visit to the doc's with ankle pain. Well, since then, things have gotten interesting. Not interesting good, however.

After reading a post on Dr Mike's blog, I started taking Krill oil (2 caps/day, increased to 4/day. 500mg each) and noticed a VERY fast reaction!! I have fairly severe degenerative arthritis in my spine and pelvis, have bone spurs in my neck and pelvis, and have at least 3 (old) ruptured discs. I've also been told I have bursitis in both shoulders (L worse than R).

I took 1 pill Friday (3/30) evening, and then 1 in AM and 1 in PM daily. Yesterday (4/7) I increased it to 2 AM and PM.

Sunday afternoon....not even 48hrs after the 1st dose, I noticed my neck didn't hurt!! When I do my stretching I still notice the pull, but much less painful, but no pain at rest, no pain with movement!!! This has been pretty consistent over the week. I get a little pain, but it doesn't last long.

Now, this is the reason I increased the NKO: For several months now, I've noticed that I often have joint pains, in joints that have never bothered me before (except one knee). When I started paying attention, I found that I would have pain in 1 or 2 joints, it would last for about 36-48hrs, and go away. Sometimes another joint or two would start in, sometimes I'd have several days between episodes.

Both ankles, knees, elbow, wrist and various finger joints. About 2 weeks ago I ended up in urgent care for my right ankle, which was now also red and swollen. Doc first said gout, then strain, and gave me the name of a new doc (long story, but no PCP for over a year). Since then, I've continued to have various joint pains, but only my left knee was red or hot. Well, over the last few days I've had red, hot, swollen joints: right (inner)wrist (Friday), base of right index finger (Saturday), and now (Sunday) the last joint of my right middle finger. I see the new doc 4/20. I've done some research, and think I might have rheumatoid arthritis. I hope I'm wrong.

I'm a bit concerned, as I'm figuring the NKO is helping to at least lower the degree of inflammation, but yet I'm seeing redness, swelling and a fair bit of heat in the joints...I mean, what would I be seeing if not for the fish oil and NKO!?

Anyway, whatever this is, at least my neck and back don't hurt!!

I've been following Protein Power pretty cleanly since Jan 2. Few processed foods, cooking/preparing almost all my own foods, mostly keeping under 50g carb a day. I also take Mg, CoQ10 and a couple of other supplements. I still take fish oil, but cut back to 4/day.

I've read a bit on anti-inflammation diets, and the only thing I eat that they say I shouldn't (except more fats than allowed) is red meat. Beef is big in my diet. I love beef. I'd be willing to cut back or even stop it, but I'm not sure it would be worth it.

I am planning on calling the doctor's office and see if I can move the appointment up some, but I doubt they will have anything.


I've only been checking my blood sugar in the morning, fasting sugars over the past week have been running 84-86. I did check after one meal, but I had been drinking tea (with milk) so I'm not sure the after meal reading (95 after 1hr) was really accurate.