Friday, June 26, 2009

Code Name: CP-690,550 Street Name: Miracle Drug

I've had a lot of questions about the RA drug study I'm doing so I decided to post about it. The drug company that has put out the study is called Pfizer. The drug has no official name yet, as it hasn't been approved by the FDA. Right now it's called CP-690,550.

I call this a "miracle" drug because after only 2 doses I saw a near 100% improvement. Obviously because it's a blinded study, you always have the chance to get placebo, which was a scarey thought, especially since I had to go off meds and was in really rough shape without anything. At this point I'm pretty sure I didn't get the placebo. If I had, I would have had the option to get rescue drugs from the doc. I think that the rescue drug is probably prednisone or some other steroid.

Below are 2 links. One is to Pfizer and the other is to clinical trials. All my RA Club buddies, I know that you're all on treaments of some sort but depending on how you're feeling, you may want to check this study out. They are still doing the study all over the place.....even in Japan! I wanted to share this because of the success I've had.

OK. How many contractures are in the audience? Guess what? Mine is gone guys!!! When I first brought it to the doc's attention (it was on my left elbow) he was very concerned. I could hear it in his voice and see it in his face. He said he wanted to keep a very close eye on it. Two weeks after he said that, he was totally amazed to see that it disappeared. his guy was speachless!

That is the biggest success. Not to mention all the things I can do again like walk barefoot, ride a bike, go for long walks, and run stairs.

So check out the links below for more info and to see if there is a study near you. click on "search for clinical trials" then type in "CP-690,550" or you can type in CP-690,550 AND" & you then ad your city after the AND. Or you can just do a search on "rheumatoid arthritis AND" &then add you city after. this site gives background on Pfizer itself

Thursday, June 25, 2009

Protect Your Joints!

Ahhh. Feeling good really made me get careless. I've been doing things that I wouldn't have been able t do 3 weeks ago. But I have not been careful and now I'm paying for that lapse injudgement. I had to pack my classroom up. I decided thatI wanted to trade kidney tables with someone else so I brought mine to the other room got the other table and brought it to my room. While I was going thru the door I dropped the table and my right hand got pinned between the table and the door frame. Needless to say, it hurt like hell. All the knuckles across the back of my hand are swollen. So my RA infested friends, never forget to PROTECT YOUR JOINTS!!!

Wednesday, June 24, 2009

Guinea Pig: Day 15

Today will be the last "Guinea Pig" titled entry. I had my 2-week follow-up today. So here's the skinny:

1. When I was there 2 weeks ago I had 46 inflamed and painful joints. Today I had no joint pain what-so-ever and only 2 swollen. The joints at my ankles/feet are still swollen BUT they are 1/4 the size they were 2 weeks ago.

2. I developed a small rheumatoid nodule on my right elbow some time ago. A few months ago, the bursa on that elbow filled with fluid. It was pretty big.....about the size of a paintball. Looked gross too. Two weeks ago, the doc said the fluid came because the bursa was trying to protect my elbow from the nodule. Today the fluid is gone. It's unclear whether the meds took care of that.

3. I developed a contracture on my left elbow a few of months ago.....while I was on methotrexate. Keeping in mind that a straight line is a 180 degree angle, two weeks ago I couldn't get my arm any straighter than about 120 degrees. Today not only can I straighten my elbow fully, the contracture is pretty much gone.

4. Two weeks ago I could barely walk. Since the meds started Ihave been bike riding, walked from school to Aquinas (about 2 miles round trip), played soccer & tennis with my students, walk around on the grass barefoot (yes it's a big big deal), walk around the house barefoot (on rugs, wood, and ceramic tile.....eaqually as big as walking around on the grass barefooted), and I can take the 80 thousand stairs at work with a run again.

The doctor, nurse, and phys. asst. were all very impressed and excited about my results. So all in all, I'd say.....Pfizer, you done good! Wonder if I can send them a fruit basket.

Tuesday, June 23, 2009

Guinea Pig: Day 14

The swelling in my joint tissue from yesterday was completely gone this morning. Tomorrow morning I have my 2 week appointment with the study doc. Should be interesting. They did tell me that the patients who have been on the drug have had pretty quick results. I wonder if there was a difference for them in the first day. I still am amazed at the differnece that 2 weeks have made.

Monday, June 22, 2009

Guinea Pig: Days 12 &13

Day 12
I forgot to post for yesterday (Sunday) I wen for a bike ride with hubby & kids. There is an old cemetery c1800's that we road to. It was kinda cool. We stopped there to wander around. We played with some horses along they way. It was nice to be able to do all that and not be in pain after.

Day 13
I woke up today with a lot of soft/connective tissus swelling on the joint connecting my index finger to my left hand. I can't bend it to make a fist. It's not painful but what the hell??? I haven't had anything like this in 12 days!

I've started a new blog and fb page dedicated strictly to my diet. My blog is but I don't know if I'm going to keep it strictly non-daiy or if I'm going to add the gluten fre stuff too. Maybe I'll start another blog for that. I've find so much cool stuff that I feel I need to have something separate for it.

Saturday, June 20, 2009

Guinea Pig: Day 11/Here Comes The Rain Again

All in all not a bad day today. Woke up a little stiff. I'm still hopefull that it's the rain. I have a couple of kanker sores on my tongue. That is one of the side effects, well, it says "mouth sores" but I only have 2 small ones and I'm thinking that they are from the salt and vinegar on the pistachios I have beem eating. I started taking folate again and they seem to be going away.

We had friends over for dinner and cards. We ordered pizza. I ordered wings.....plain. I made my own wing sauce. Basically it was the same as the regular buffalo wing sauce but instead of butter I used Earth Balance. It was pretty good. I had to make sure that I told the pizza place no sauce and no flour on my wings. They were actually pretty good plain.

I'm thinking of starting another blog just focused on my dairy-free, gluten-free adventures. But there are already so many of them out there. Do we really need one more?

My daughter lost her first tooth today. She looks so cute!

Friday, June 19, 2009

Guinea Pig: Day 10/I'm Walkin' Yes Indeed!

I can't believe I was actually able to do 1/4 of the stuff I did today! Our school had Field Day at a nearby high school. It was about a mile or so round trip. While we were there I played soccer and tennis with my class. It was great! It felt so good to be out doing things! Maybethis weekend I will try that slip-n-slide.......

Thursday, June 18, 2009

Guinea Pig: Day 9/The Non-Dairy Queen

Woke up a little stiff today. Everything else seemed about the same tho. A hot shower fixed it but the stiffness kept coming back. Ok. Minds out of the gutter folks! I know it sound dirty. LOL. Maybe I'm the only on laughing. Anyways, thought maybe it's the rain. Who knows. It's supposed to be warm next week so we'll see what happens.

I found a couple of really cool gluten-free blogs. They are on my list of blogs I follow so check them out! Lots of recipes. I can't wait to try some of them. Over the next couple of weeks I'm going to really go thru the pantry and remove anything with gluten that I used to eat.

I've gotten all milk, casin, and whey infested products out of the house. I'm slowly trying to pull it from the kids' diets too but it's hard. They are cheese hounds. Maybe I can limit it. I have been off of all dairy for a month and a half and I really feel the difference in my body. When I did have dairy to force inflamation, I felt an immediate reaction. Not only did I swell and have pain, but I felt bloated and just gross. My whole insides hated me! I still miss cheese and pizza and Stoney Field yogurt and Abbott's. Oh my God! How am I going to live without Abbott's! And GARBAGE PLATES!!! I could get a hamburger plate with no mac salad. Better yet! I'll make my own! Luckily I can still eat Bottled Hell! No dairy in there!

If you want to be a Non-Dairy Queen, here is a list of some of the tastier things I have had. If you are local, Wegmans carries these but not all carry the yogurt. Lori's and Abundance Co-Op carry all of it:

  1. BUTTER SUBSTITUTE-Don't use margerine! Try Earth Balance instead.
  2. YOGURT-I'm not fond of coconut unless it's fresh but So Delicious coconut milk yogurts. They have all the yogurt bacteria.
  3. SOUR CREAM SUB-There are 3 I've found and they are Sour Supreme, Tofutti, and Follow Your Heart are the best brands
  4. CREAM CHEESE SUB-I've only found one. Better Than Cream Cheese isn't too bad.
  5. MILK-I mainly use hemp milk now. The best brand is Living Harvest. The chocolate is divine! If you want to try almond milk I suggest Almond Breeze. For soy, I used good old Eden Soy but it's rare.
  6. CHEESE-Haven't found a good one yet but Veganrella isn't too bad on homemade pizza. Just don't use a ton. It also has gluten in it so if you avoid gluten, don't bother.

So that's it I think! You can use these as you would the regular dairy product. I've been cooking with them for a long time. My vegan beef stroganoff is YUMMY!!!!! Too bad it's full of gluten! Damn it! :0)

Wednesday, June 17, 2009

Guinea Pig: Day 8

Woke up this morning with some pain and swelling. It left quickly but it's more than I've had in a week. I'm thinking it was something I ate. I had sushi for dinner last nite. I didn't take into consideration that even though there was no cream cheese in the rolls I got, I don't know the ingredients in the japanese mayo. And I forgot soy sauce has the ever-dreaded GLUTEN!!! Oh well. Live and learn. Still feeling great.

I have a friend who's mom has ra and she's really having a hell of a time. I gave her some info. Ihope it helps. Having it makes me feel so much worse for others because now I know what they are going thru.

I was doing some research on gluten and found some pretty interesting info:

Immune responses to gluten, the proteins found in cereal grains are a common cause of an impressive number of diseases. The remarkable fact is that eating “normal”, often-recommended foods can be hazardous to your health. Celiac is the best defined gluten disease.
The classic presentation of celiac disease is chronic diarrhea, with abdominal bloating, sometimes pain, weight loss, iron deficiency and other evidence of nutrient malabsorption. Celiac disease is immune-mediated and should be described as gluten allergy.
People who are diagnosed with celiac disease often feel like outcasts and resent the hard work of avoiding gluten. We have taken the opposite approach and ask a much larger group of people to exclude gluten along with other popular foods as a routine measure of restoring health.
A list of diseases that occur with increased frequency in celiac patients resembles the list of disorders reviewed under our descriptions of delayed pattern food allergy. These diseases include diabetes, thyroid disease, anemia, rheumatoid arthritis, sacroileitis, sarcoidosis, vasculitis, inflammatory lung disease, eye inflammation, cerebellar ataxia and schizophrenia. These and other immune-mediated disease can be linked to gluten ingestion. These associations suggest that people with a tendency to immune hypersensitivity diseases are vulnerable to food antigens that can cause systemic autoimmune disease.

Food for thought.....

Tuesday, June 16, 2009

Guinea Pig: Day 7

Another great day. I've been wondering what happens on month 4 when I'll definately be in meds. Will I continue with the same dose I have now? ( I know it's a study and I don't officially know if I'm on drug or placebo but come on. There is no way that a placebo effect lasts this long!) Will I get a higher dose? Will I get a lower dose? The only thing I know for sure is that I won't have a placebo. My left elbow continues to slowly unswell. WOOT!!! I origionally opted out of our school trips to Sea Breeze and Aquinas HS because of all the walking but I am going to walk to the HS. Sea Breeze I won't do because I only have 4 out of 23 kids going. But I feel confident that I can walk the mile to the HS and back without a problem.

Monday, June 15, 2009

Guinea Pig: Day 6

Not much to report except that I still feel great! I may have over-did the weekend a bit because my ankles were a bit sore but nothing that I couldn't deal with! WOOT! Pfizer Drug Corp ROCKS!!! Now, help my friends!!!

Sunday, June 14, 2009

Guinea Pig: Day 5/Bring A Dish Of Guilt To Pass/Thank You

Got my rings on again today. I haven't been sleeping with them for fear that they may get stuck. That used to happen alot. They'd be so tight that it would wake me up and I'd be in the bathroom soaking my hand in ice-cold water and using soap to try to wrench them off. Not so smart, I know. Most of the swelling in my joints is gone. My left elbow is still swollen but not nearly as much. It's so close to being straight that I'm not sure if it had improved over the past day.

I bought the kids a slip-n-slid and they had it out today. It's pretty cool. It has 3 sections and it comes with 3 mini blow-up things that you can use to slide on. It's not as long as the slip-n-slides of my childhood but it also doesn't have the metal stakes to hold it down like mine did. Scott was playing on it with them while I was working in the garden. He told me to come and play but I opted out. I really wanted to but I have this fear of hurting myself. That still keeps me from doing things but maybe it's justified. I don't know.

Took Mackenzie to her first-floor school picnic today. It was great to be able to walk around the grass bare-foot and not limp. I brought a chair instead of a blanket but I didn't have to use it. I was comfy sitting on the ground. Glad I ate before I went and that I brought a yummy spinach salad with apple cider vinagrette. There wasn't much for a non-dairy, non-gluten me to eat. I was talking to a person there and my diet changes got brought up. I was telling her why I'm doing it and how there have been some improvements. She made the comment that since it was working then I didn't need meds and the "arthritis" would go away. I told her that RA isn't like that and I'll probably always have to be on meds. I guess I have to accept that I'll be explaining this for the rest of my life.

Part of me feels guilty for feeling so good these past few days. I feel like I shouldn't be talking about it because I'm goingto upset recent new friends I've made. Since I started this blog I've met a couple of really great people on Blogger. These girls and guy have been a wonderful source of support for me. They are people who I wish could be finding this same success that I may have found. They are wonderful people who are struggling daily with this rotten disease but still find the time and ability to reach out to others. I wish there was a way to thank them! All I can say is that whatever Phizer Corp. has stumbled upon is pretty damn good and I hope that it can help more people with RA, starting with my Blogger friends.

Saturday, June 13, 2009

Guinea Pig: Day 4

So today I spent the day doing the following: walking around the public market, walking around the Spencerport Fireman's Carnival, walking around the house and yard barefoot, and walking around the kitchen barefoot on the tile floor. And it was all done pain-free. I know it sounds minute but these are things I haven't been able to do in a long time pain-free, even with Advil. I was dreading walking around the carnival today and I kept waiing fo the point where I'd have to sit but it never came. And when we left, I was the one who walked the 1/4 mile to get the car!(Connor got sick on one of the rides and couldn't walk that far) And I still haven't had any Advil. The swelling in my right thumb has gone down. Other swollen areas have gone down as well.

Friday, June 12, 2009

Guinea Pig Day 3 Part 2

I got my rings on today for the first time in 3 weeks. My right thumb has nearly doubled in size and there is a lot of fluid on the joint. Had my first gluten-free beer.....a Redbridge by Anheuser-Busch. Not bad. Technically speaking I'm not supposed to drink because it can compromise my liver because of the medicaiton but then again, am I really on medication?

Guinea Pig: Day 3 Part 1

Well, this morning was much like yesterday morning.....very little pain and swelling. I'm feeling better all around. Not so blah and energyless despite having tons of energy bottled up inside, if that makes any sense. My left elbow seems a little less swollen. I can almost straighten it all the way. Minimal pain in my ankles. So in a matter of 2 days on some form of pill, I have gone from a 10 (being the most severe) to a 2 in terms of pain. Not reading into anything. Just observing.

Thursday, June 11, 2009

Guinea Pig: Day 2-Part 3

So it's like this.....You know about my morning pre-shower and meds. Today I've been up and down the stairs at work more times than in the past week. It wasn't pain-free but it was manageable. No limping. Minimal ankle swelling. I was able to cut through 3 half-frozen bagels with no pain.....yesterday I couldn't write. The joint connecting my index finger to my hand on my left hand....swelling completely gone.

I'm trying not to read into it. I know realistically a med can't work that well that quick. So what is it? I think I'll just go to the Spencerport Fireman's Parade and see what tomorrow brings.

Guinea Pig: Day 2 Part 2

So here's the low-down since May 10th:

1. I've had no dairy.
2. I've cut gluten out 90%.
3. I've had no RA drugs.
4. I've had to have an IUD (sorry guys) and, much to my delight, "Aunt Flo" has been here since May 8th.
5. Pain and swelling have been eever present without RA meds...Advil was a bit of help
6. Number 5 being said, I have noticed a difference without the dairy.

So, as of when I woke up this morning, I had 2 doses of whatever I was given from the study doctor. I also have not had any Advil since Sunday morning.

As I prepared to uncurl myself and stretch out some of the pain and stiffness, I noticed that I had less pain. Whatever. So I stretched. I was anticipating the normal excruciating pain I feel whenever I do this. Not so much pain this morning. Next is the nightmarish of a walk, or rather limp, to the bathroom. I stepped out of bed. No sharp ankle pain. Just a dull throb. Even more amazing...I actually walked to the bathroom without limping or hopping. As I took my socks off ( I hate it when my feet touch when I sleep) I noticed that my ankles were significanlty less swollen then they were yesterday.

Just to explain.....ya know the bones on the outside and inside of your ankles down by your foot? Well mine have been very troublesome for a long time.....long before the diagnosis. Anyways, The soft and connective tissues have been so inflamed that it looked like I had golfballs on the outsides of my ankles and the insides of my ankles looked deformed. I actually was beginning to think that was what was happening until this morning. The insides are not swollen at all and the outsides are about half as swollen as yesterday.

Continuing on, my left elbow seems a little straighter today and less swollen. To my relief the doc told me yesterday that there isn't damage happening yet but the inability to straighten it was coming from the swelling. My joints connecting my fingers to my hand are less swollen. My wrists don't hurt as much.

And this was all before my hot, hot shower.

What does this all mean?
1. I have a "miracle drug" in my possession.
2. I'm having a good day.
3. The ever-scarey "placebo effect" has taken hold.
4. Absolutly nothing.

Guinea Pig: Day 2 Part 1

So this may sound crazy but I woke up this morning and my ankles were only about half the size they have been for the past several months. Let me explain. Ya know that bone that sticks out a bit on the outside of your ankle/foot? well, the soft and connective tissues on both of mine have been so swollen that it looks like I have golf balls under my skin. So it's not quite my ankle as much as it is the area where my foot and ankle connect.


1. I've had no advil since Sunday morning

2. I've had 3 doses of the study "drug" which may not even be medication.

Wednesday, June 10, 2009

Break From Reality/Guinea Pig: Day 1

Tonight, despite being in so much agony that I just wanted to go to bed as soon as I got home from work, I took Connor to Spot Coffee to see Break of Reality. They are a group of 3 cellists and 1 drummer who got thier start at Eastman School of Music. They play "alternative" cello. They do covers of metal bands such as Metallica (my personal fav), Slayer, and Helloween. They also write thier own stuff. They are really good. It was nice to get out and have a little fun, although we had to get there an hour early to make sure that I could actually have a chair. Needles to say, Connor was bored but we had good company to talk with. Paula, the director of his school was there along with the former asst. director and her husband.

Talking with the Paula, I discovered that she knows someone who has RA and is on the dairy-free gluten-free diet and she has seen great improvements in her condition. That's definately uplifting. Especially since I miss cheese so much and have not found a tastey alternative.

Today I went for my official first study-drug appointment. I was given 2 bottles of pills. I have to take one from each bottle twice a day. So 2 pills in the AM and 2 pills in the PM. Basically, I could have one of the following combinations in the bottles:

1. placebo, placebo
2. placebo, 5mg
3. placebo, 10mg
4. 5mg, 5mg

All of the bottles are labeled "placebo" so who knows what I have. They said if I have the drug in any combination, I could notice a difference in as little as 2 weeks. Advil is up to me. If I take it, I risk not knowing if the drug is working or not. If I don't take it, I risk more pain. Damned if I do, damned if I don't.

Tuesday, June 9, 2009

Pain WIth Every Step

As I was leaving work today I had to walk down some stairs to get out the door. I was wincing with pain as I was walking down them. Unaware that anyone was behind me I thought out-loud a little chorus of "Ow ow ow ow" as I walked. Then I heard from behind me, "Careful Ferris. Don't hurt yourself." A guy I work with was walking out behind me. I looked at him and laughed. "Don't hurt myself?" I asked. "I can't walk across a flat surface without feeling pain in every step." It occured to me at that moment that I don't remember the last completely pain-free day I have had since all of this started in February of last year. It's been16 months. That's a long time to feel pain.


For about two months I have been unable to fully straighten or fully bend me left elbow. It feels like there is cotton stuffed inside my joint. It feels tired most of the time until I try to move it past the range of motion I have left. Then it hurts. I did discover that when I put direct heat on it last nite it loosened up but this morning it is frozen worse than ever. Anybody in the RA Club have any insights on this? It's the only joint that does this. The rest are swollen and painful but they don't have this frozen feeling. I tried to google it but I must not have been putting in the right words. Thanks!

Monday, June 8, 2009

Can You Die From RA?

I just read the newest post from one of the blogs I'm following and I wanted to share what this woman wrote. The link is below and she has several links with-in her blog. Many people are unclear about what RA really is and Kelly has put it in perspective very plainly. It's not just sore, worn-down joints likeyou see in Osteo Arthritis. Sure, sore joints happen but mostly due to inflamation of connective tissues. I still have all my cartalige but I have all the joint pains as if it had worn down like in OA. I bet my grandma and her OA can beat me to the top of a flight of stairs most days. RA is an auto-immune disease where the body's immune system actually turns on the body and attacks it. It effects more than joints. It effects the whole body.

While Kelly's blog is fabulous, one other thing that should be mentioned is medication. While there have been great advances in treatments for RA, three facts still remain.....

1. The medications must be done with a "trial and error" mentality. You don't know what will and won't work and how well a drug will work and for how long it will work. You also don't know if maybe you need a combo therapy (more than one drug working together.....I was on 3 just months ago). It could take over a year to find the right treatment.

2. While there are treatments that can be successful, there may also be a price to pay, namely with another illness caused by the RA treatment. In all honesty, no drug we take is without its consequences. While they are very successful, RA treatments are also dangerous, the least of which is liver damage. Let's not mention blood disorders, heart problems, cancers.......If a treatment is giving negative side effects, it will have to be stopped and the patient has to start over again from scratch.

3. Since in RA the body is under attack by the immune system, the meds used to treat RA supress the immune system. So how do you fight a cold with no immune system? You really can't fight it properly. So what can happen? Quite plainly...a common cold could kill you. Is it likely? Maybe not. But is it possible? Yup. Come to my classroom during cold season and see paranoia up close! Yeah, I've had a pneumo-vax and flu shot but it's not a guarantee.

Still, Kelly's post really shouts it out that this isn't your grandparents' arthritis.

Sunday, June 7, 2009

A Partner In Eating

I spent a little time with my cousin yesterday going thru her pantry and fridge/freezer. I am so impressed at the changes and sacrifices she has made! It was amazing to see!

Let me back up real quick. Her son was recently diagnosed with autism and to preserve his health and help him heal, the whole family has gone gluten and dairy free. She showed me so many products I didn't even know were out there. And I frequent Lori's, Abundance, and Wegman's Nature's Market weekly! I guess I really wasn't paying attention.

She gave me lots of goodies to try, which I am very greatful for. And she gave me some advice and suggestions. When my husband became a vegetarian, we kinda stuck out in the family. And then when the kids came along and we raised them the same, well, I know it was a pain but I tried to make it easier. I have to say, I'm glad we aren't the only ones with dietary restrictions who are gonna be at the dinner table! When I decided to try this dairy-free gluten-free thing I did consider just staying home for the holidays. But I'm not alone now! I have a partner in eating! Actually, I have 4!

When we started talkng about the holidays, of course it was focused around what we would be eating. Or, more like what would NOT be eating. No more Christmas delicacies like cardones and artichokes, for every Italian knows that you can't make them right without cheese! And the desserts! I think we both decided that we aren't going to bake cookies this year. That's gonna leave a big hole on the dessert table! Or maybe we'll have to do some modified baking!

Saturday, June 6, 2009


I've been reading through a couple of RA blogs that I follow and I realized that I'm pretty lucky where I stand with this disease. The blogs I was reading are from people my age and younger who's disease has progressed farther that mine at a very quick pace. I just read from a new blog I discovered and this girl was diagnosed in her early 20's and has already had 2 knee replacements. I guess in the grand scheme of things I'm pretty lucky.

Some of the things I've been reading are so true...the sympathy looks (I mean you Shanley!), the lack of understanding what RA really is because it's not about getting old, not being able to work, the feeling that people are sick of hearing how much pain you are in day after day. I try to be honest when someone asks me how I am. The only thing I can say is if you ask me how I am, be prepared for the answer. We don't have to have a conversation about it but most times it's enough for me to say, "I feel shitty today" and be done with it.

So everyone who may be reading this.....most of us know someone or know someone who knows someone with RA. Just remember these few things:

1. RA is not about getting old.
2. Slow down when you're walking with someone who has RA. Don't try to make them keep
your pace. You should be keeping thier pace.
3. Hold the door!
4. Don't look at them like they are dying.
5. When you ask, how they are, of they need anything.....mean it!

I love all my friends! Everyone has been so supportive and I thank you for that!

Thursday, June 4, 2009


The LPN called me this morning and my sed rate was up to 31! It's enough to let me in the study! I go back on Wednesday the 10th to get my drugs. Well, hopefully it'llbe the drug anf not the placebo. One thing that is a positive sign is that it seems that the dairy-free does work. I had dairy for 2 days before my blood work re-do and the effect it had on me was almost immediate. So now it's back to the dairy-free and my continued decline from gluten.

Wednesday, June 3, 2009

More Blood Tests

So I had another blood test today to check my sed rate. The LPN said she would call me in the morning with the result. I hope it has gone up. I am in so much pain. I have a huge lump on the inside of my left wrist and I can't make a fist. The joints ont the backs of my hands are huge. They look so gross! I haven't ben able to get my rings on in 2 days. We had salad for dinner last nite and I put cheese in it and used ranch dressing on it and then later I had an icecream sandwich......yes it was real icecream. Organic but real. The effect was immediate. By the time I went to bed joints everywhere were swollen. I guess I can't complain. I did it to myself. All I can hope for is that all the swelling means that my sed rate has elevated. If AAIR calls me in the morning and says that the numbers weren't high enough I have no idea what I'm going to do. I've been thinking about that and maybe I won't go the medication route. I wonder how much of this RA can really be controlled by diet. Do I really want to take that kind of chance with my health? Decisions decisions.

Tuesday, June 2, 2009

I Hate Pain!

So I had a shity night sleep last nite and spent the day in agony. The joints on the back of my right hand are prety swollen. Elbows hurt, ankles, toes, fingers. I miss my Advil! Can you become addicted to that stuff? Well tomorrow I have my re-do for the sed rate. I can only hope it's elevated enough! Otherwise I have no idea what to do. I don't have a rheumatologist beacuse I got rid of mine. Please let this test be where it needs to be!

Monday, June 1, 2009

Are You Kidding Me?????

So I get a phone call today from the LPN who is heading up the drug study that I am trying to get into. She said that she got my bloodwork back and my sed rate and c-reactive protien rate (both indicate inflamation if elevated) were too low for me to be in the study. I was completely blown away. I had been on methotrexate for 10 months and my rates were still extremely high. I go off it to prepare for this study and NOW my rates decrease. WTF?!?!?!?! Seems like milk-free, mostly gluten-free diet has been working to some degree. Or it could be the 3200 mg of Advil I take every day. Who knows. I have to go back this Wednesday for another sed rate test. Until then I can not have any kind of pain med. So I have to suffer until Wednesday nite. Well isn't that fan-fucking-tastic! AHHHH!!!!! I'm so annoyed!!!