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.


Suzique said...

Wow, Cindy, you HAVE been through it! Sorry to hear about the PRA; I have lots of RA in my family but so far have been spared. Hope you're able to get it under control soon!

Cindy Moore said...

Thanks Suzique!

Carol Bardelli said...

Cindy, I'm sorry to here about your PRA. It runs in my family too. You're a strong person and I know you'll cope. You're in my prayers.

I was misdiagnosed at 20 with RA (by my GP) mostly based on family history as my grandmother and aunt had it. I was suspicious because I never had redness or swelling. Later a rheumatologist diagnosed intermittent tendonitis because it's common in people with cerebral palsy. I'd touch something or take a few steps and get "zapped". Joint problems totally suck. I was lucky my IT nearly went away as I got older and worked out more.

Best of Luck. I hope you're one of the lucky ones who gets a permanent remission!

Cindy Moore said...

Lots of mis-diagnoses with AI diseases!! I am "sero-positive" in that my Rheumatoid factor and Anti-CCP are both positive, but so far there is no joint damage and my symptoms are not consistently like RA symptoms. Just saw my doc today, and I'm going to be continuing the anti-biotic, at least for another 3 months.

CP isn't enough, huh? It seems that that's fairly common....many people with one problem end up having others, sometimes completely unrelated.

Curious about your statement about being "zapped"? Is that like an electrical zap? or using the term figuratively?

YOU are looking fantastic! And Bruno is adorable!

Anna said...

Hi Cindy,

We seem to frequent the same blogs. I used to live in the Triangle area of NC so I always recognize your name. I saw your recent comment on Dr. Briffa's blog, asking about his thoughts on the Marshall Protocol in relation to your PA. Did you see Dr. Davis's posts/comments about the MP on his Heart Scan blog? He dismisses it, as do others who I find quite credible.

Hope you are feeling better these days.

Carol Bardelli said...

Yes, zapped as in electrical or shooting pain. I luckily rarely get those anymore. It's unnerving to reach for something like a door knob and get that.

My serum was negative back then which is why I thought the diagnosis was wrong. (No internet back then but I lived in the library and researched RA).

My brother's a medical professional and when I got colitis he said he'd bet it was Crohns. He said he saw a lot of people with CP that developed it. That's weird. I'll say this, it's a great motivator to eat clean!

Thanks for the "fantastic" compliment! I'm working out a lot, mostly with weights. Bruno's adorable and devilish. Handsome, smart, clever and he knows it.

Take care.

Cindy Moore said...

Hi Anna...yes, I did see Dr Davis's blog on the subject, but wanted to see if Dr Briffa would comment also. There are a couple of people on a support forum that believe this and I'm trying to get enough "ammunition" to try and convince them otherwise!

Heck, even if there's something to it, which I doubt, I'd still rather have RA symptoms than cancer or heart disease!

Anonymous said...

Hi Cindy,

Just re-found your blog today. Sorry about your health issues!

My brother, who lives in Canada, was diagnosed with your disease and also celiac disease a few years ago. Once he gave up eating wheat or gluten in any form, his PRA symptoms also vanished!

My Canadian sis, who was diagnosed with fibromyalgia (another autoimmune disease) has had a huge remission of that with eating totally gluten-free, also.

I know you eat low carb, but don't know if you also eat gluten-free. Trying that might help you...

Best wishes,

Cindy Moore said...

Thanks for commenting Carol! I do try to avoid all grains when following my plan. I sometimes have wraps and occasionally toast with breakfast, but I try to avoid all grains for the most part.

Lately, however, I've been off plan more than on....but I've also been doing good, so who knows.

Anonymous said...

Hi, Cindy...I was diagnosed with RA 2 years ago...tested postitive w/RA factor. However, for the past 18 months I SUFFERED with joint pain that traveled all over my body. Yesterday, finally, my RA doc said it was PRA and increased my dose of methotrexate and put me on prednisone. I feel your pain and hope someday RA and PRA will be a thing of the past. Lois

Cindy Moore said...

Lois....please check out this link!

I'm planning on blogging about The New Arthritis Breakthrough: The Only Medical Therapy Clinically Proven to Produce Long-term Improvement and Remission of RA, Lupus, Juvenile RA, Fibromyalgia, ... & Other Inflammatory Forms of Arthritis and AP therapy, but things have been kind of wild here.

Also check back in a few weeks. I'm working with 3 other women setting up a support forum and information site about PRA.

And keep in touch!

Carolyn said...

Cindy-I stumbled on your blog and almost fell over. I never heard of anyone with the same symptoms I've been having for three years, now. The local doc's couldn't get past gout, but I knew that wasn't it. My diagnosis, so far, is myofascial pain syndrome. It feels like shards of glass and isn't always in a joint. Nothing ever hurt more, and showed less. Now I ask people if they ever heard of plantar fasciatis-just in case you don't think the pain is real. You wouldn't believe all I've been through, including near congestive heart failure and an anal fissure caused by the "cures". Now I'm mostly under control with Celebrex, but they just added Gabapentin (Neurotin) and I'm having a terrible time with it. Anyone have any experience with that one? Does it ever help more than it hinders?

Cindy Moore said...

Carolyn, I also had several diagnoses, including gout and bursitis, until my primary doc finally sent me to my current rheumatologist, who diagnosed me immediately. I've also had what was thought to be plantar fasciatis, but my RA said no. He says I likely have tendonitis involvement when the joints act up.

I am currently only taking Doxycycline for the RA and Diclofenac (Voltaren) as an anti-inflammatory (and add Aleve when it gets bad). I keep refusing all of the "RA drugs" as I'm not convinced that wiping out the immune system makes sense and I've also had enough infections (including diverticulitis) that I'm terrified of those drugs!

I'm doing pretty good, so far no signs of any permanent damage. Actually right now I'm on a course of prednisone (steroid), but it's only for 6 days and I usually get really good results (but it takes a few days to kick in!) I also have Oxycodone for the severe pain, but don't take it very often.

I don't seem to have any systemic issues from the RA, but have a couple of unrelated issues that I have to deal with.

Have you tried any diet modification? I have a friend that is on a gluten free, low carb diet and is doing wonderful....takes NO meds at all! I have also found that low carb is better for me (under 45 grams total a day), but not enough to keep me off meds.

Also, me and a few friends are trying to get a support group going.....if you want to send another comment with your email address (which I won't post), I'll let you know when (if) we get it up and running.

Are you seeing a rheumatologist? If not, I'd highly recommend it.