J's elimination diet

[jamietwo]

Just checking in! : ) I hope everyone is having a good summer!

I am enjoying food! I recently took a road trip to Whole Foods and stocked up on Engine 2 hummus and brown rice tortillas. I eat them with lettuce and grapes (can't do tomatoes)! SO good! Trouble is now that I've had E2 hummus, I don't like my old hummus recipe! Anyone have one that tastes like Rip's?

I have an appointment with my rheumatologist towards the end of the month, and I'm going to ask her to cut my dose of Plaquenil from 300mg/day to 200mg/day.

Physically, I am doing really well, although I'm pushing my limits at times. I chaperoned an all-night event recently, and even though I got a few hours of sleep the next day, and felt good the next night, it really took me about a week to recover. I worked outside for several hours yesterday in 90 degree weather. I was beat afterwards, but I rested a bit, showered and made dinner. I have a really hectic schedule, and I'm so thankful I feel like keeping up with it!

[jamietwo]

On July 16, I was really tired and my upper back hurt on one side - I figured it was because I had done some heavy lifting. Then I noticed the pain extending to the rest of my upper back, my arms and neck, and I realized this is how my lupus flare started 2 years ago! That got my attention! Why do I think it started to flare?

1/ I was stressed out and kept pushing myself
2/ I was working outdoors with a heat index well over 100 degrees
3/ I was not getting enough sleep or getting enough rest in general
4/ I was enjoying a variety of food

I backed off and started getting some rest and employing all the relaxation techniques that I know, and it subsided! In just a few days! Yes! I stopped eating E2 tortillas and hummus on a daily basis, but I still had one occasionally. THEN I ate popcorn! Sometimes I think it makes my joints a little stiff and sometime I don't think it does. I've also been eating gf oats. Same thing there. I haven't gone back to eating ONLY my safe foods, but I still eat a LOT of my safe foods.

I saw my rheumatologist today, and she was happy with my progress. I don't have to go back for a year unless my labs are alarming. She gave me permission to "play with" my Plaquenil if my labs are good, but she reminded me that a change in dose won't show up for a few months. She says I'll be on it for life. It was a little hard to argue with her about it today since my scare a couple of weeks ago, but we'll see how it goes. Oh yes, I mentioned the possible popcorn connection to her, and she said - what do you expect when you eat junk? Um, it was plain organic popcorn popped without oil or butter.

[nicoles]

Awesome that it backed Dow after good self care and relaxation! For me, stress is THE BIGGIE, now that food is settled. But relaxation and stress reduction are magical!

[jamietwo]

Thanks, Nicole!

I got my lab results today. My SED rate is holding steady at 5! Here's a recap of my SED rate over the last 2 years:

Aug 2013 : 133
Oct 2013 : 111
started Plaquenil after the blood draw in Oct 2013
Jan 2014 : 80
Jun 2014 : 20
Dec 2014 : 5
Jul 2015 : 5

My Total Bilirubin was a little high, which makes me nervous, but some labs list my reading as normal. I also read that Plaquenil can make it go up, so that is added incentive to lower my dose.

Beginning 8/2/2015 (yesterday): lowered Plaquenil to 200 mg/day (down from 300/day which was down from 400/day).

Edited to add: I weighed 134 lbs, and I wasn't wearing jeans, boots, winter coat, purse and shopping bag! That put me at a healthy BMI of 18.7 (for those of you that haven't followed my story, I have gained UP to a healthy BMI)!

[jamietwo]

A day or two after I got my lab results, I got a letter from my rheumatologist. It said don't worry about the slightly elevated total bilirubin.

However, it did say that I needed to be retested in a month because my platelets are low and getting lower. I kind of ignored the platelets because in 2008 when I had my surgery, my platelet count got so low they couldn't get a reading! Apparently that's not good. It can be caused by lupus, the meds I'm on, or a few other things.

I'm going to enjoy my health as I know it right now. I've come so far in 2 years, and I'm so grateful. If there's more to come, I'll deal with it when it gets here!

[jamietwo]

Ugh. I'm sorry to report that I'm flaring. Body aches, stiff fingers (and other joints), super tired. It must have started right after my last post. I'm still functional, but not like I was! I looked back in my journal to see when I previously dropped my plaquenil dose (from 400 to 300), and it was Jan 2015. Even though it can take months to see a change, I have a hard time believing it would take EIGHT months! And the fact that I recently (start of August 2015) dropped my dose further (from 300 to 200) - that is way too early to see a change (presumably). All this has me wondering if the medicine ever did anything for me in the first place. I credited it with dropping my SED rate and gaining weight and muscle mass, but it could all have been the natural progression of the waxing and waning of the disease (lupus). I don't know if I should ONLY be eating my 10 safe foods or if I can continue to eat yams. I was enjoying grapes, but I'm assuming I shouldn't eat them. What about my gf oats? Part of me wonders if ANYTHING I've done has influenced this! Sorry for the discouraging news. I will regroup and hopefully find a way to beat this! But it is VERY scary to think I could end up back where I was 2 years ago.

[chewy]

what are your current 10 safe foods?i eat the basic Elimination Diet -cannot eat oats in any form myself

[jamietwo]

Chewy, my 10 safe foods: long grain brown rice, collard greens, kale, cabbage, broccoli, carrots, apples, blueberries, raisins, dates.

I am still eating yams too. I had switched from long grain to short grain rice several weeks ago and now I am transitioning back. I also started back on 400mg of Plaquenil on 8/20/15 (just in case). All my fingers are swollen today and I can feel all my joints. Body aches too. Trying to keep a positive attitude and carry on (without overdoing it - which I have been doing!).

[chewy]

hope your joints improve soon jamietwo.your 10 safe foods are certainly ultra healthy~

[jamietwo]

Thanks Chewy. I'm getting as much rest as possible, and MAKING myself slow down. Actually, my body is making me. There's a lesson in this!

[jamietwo]

My flare is getting worse (and then hopefully it will get better). My fingers and knuckles are fat, stiff and painful. Toes and knees hurt. The body aches seem to travel. One evening my neck got really stiff (which made driving difficult). One night my legs hurt so bad I couldn't find a comfortable position to sleep. My upper arms hurt. I can't eat as much so I'm losing weight again. Sigh. Lupus is a strange beast.

[Timaca]

Jaime~
Lots of hugs to you! I've been away from the forums or have just missed your posts somehow. I am so sorry for the trials you are going through!!!

I'll be sending you lots of prayers and good thoughts. Keep resting!!

On a side note, wheat didn't work for me (I trialed it again last week), and interestingly enough I *think* FD&C yellow #6 is also a problem. I was coming down with a cold, so I took 1 Zicam and some Airborne in hopes of warding it off. I ended up itchy 2 hours later, then the headache, then the stiff joints which are some of my usual histamine symptoms. I wondered if it was the coloring in the Zicam. The next day I had the Airborne, and no symptoms. I have yet to retest the Zicam because my cold is gone. But I find that interesting and will keep it in mind. FD&C Yellow #6 is ranked a "2" on the SIGHI list meaning it is likely to cause reactions in some people.......

Always the experiment. Hang in there!

Best,

[jamietwo]

Thanks, Timaca! I'm glad to see you are still persevering! One of my pet peeves about medicine, that you're supposed to take to get "well", is that they almost all have dyes and such in them. So we eat a clean diet until we're sick, then we consume junk? Makes no sense!

I haven't seen my lab results from Friday yet, but the report from the rheumatologist is that my platelets "improved". I'm to get them checked again in 30 days. In the meantime, my flare is active. I don't feel too badly as long as I can lie around and sleep as needed. At least now I can find a comfortable position! I have to go out this evening for a few hours, so I have pretty much been a slug since I got off work at mid-day, resting up for tonight.

[jamietwo]

Update!

I've been having a lupus flare for a few weeks now - starting around mid-August. I saw my rheumatologist on Thursday, 9/24/15. We talked about my symptoms, the plaquenil, and other medicine options. She doesn't believe that "overdoing it" or "stress" will cause a lupus flare. Not sure I agree with that!

Rheumatologist recommendations:
Go back to 400mg/day of plaquenil.
Take a cortisone shot to see if it will take the edge off the flare so the plaquenil can do its job.
Take fish oil or eat fish - she said studies have shown that taking fish oil is even more beneficial in reducing inflammation than methotrexate (at least that's what I understood her to say, and no, I didn't ask for the name of the study or studies)

I mentioned that I had tried a dha supplement two years ago and it didn't agree with me (the doctor wasn't impressed since it was a "synthetic").

My actions:
I resumed, as of 9/24/15, taking 400mg/day of plaquenil.
I agreed to a one-time injection of cortisone on 9/24/15.
I still don't want to take fish oil, but I googled "fish oil and Nicoles" (thanks, Nicole!) and found the name of the DHA supplement she found helpful (Nordic Naturals Algae Omega 120 ct.). I made sure it wasn't the one I had tried that didn't agree with me (Deva, Omega-3 DHA, Vegan, Lemon Flavor, 2 fl oz). I'm still apprehensive about taking a DHA supplement because of my experience 2 years ago...

AMAZING NEWS
The doctor said the cortisone shot probably wouldn't kick in for a couple of days. By that evening, I thought I had more energy. 24 hours later, on my 15-minute break from work (I work from home), I loaded the dishwasher, started a load of laundry, fed the cats and cleaned the half bath. I got back to my desk with 3 minutes to spare! OMG! When I got off work, I cooked, I ran errands, I did several more loads of laundry. I felt amazingly good! It is no wonder that people take meds. I am truly hoping that this gets me over the hump and the plaquenil will keep me going!!! How far I've fallen from "NO DRUGS" to "just one drug" and now "one more to help it?".

Going forward:
I'm not sure. Do I start a new elimination diet when I'm not in the midst of a flare? If you'll remember, I reacted to everything I tested. So many people on this forum have given up their meds from eating this way, but I had my major lupus flare years after I started eating this way. At the risk of sounding like Yogi Berra, I was feeling SO good when I was feeling good!

TODAY:
I'm going to take advantage of feeling good!

[jamietwo]

I had my cortisone shot a week ago yesterday, and you can still see my knuckle bones (as opposed to having them swollen!)! I feel great! Of course, I'm worried that I won't when the shot wears off. I even went for a bike ride a couple of days ago - definitely out of shape after so many weeks of being non-functional, but at least I got to ride! I am dutifully taking the Plaquenil as directed.

I ordered the Nordic Naturals Algae Omega 120 ct. and started taking it last night. My plan is to take one twice a day, so I just took my third one. I haven't noticed any ill effects yet, but I wonder if I would while the cortisone is still in my system?

My doctor sent my lab results from last Thursday (9/24), and my SED rate was back up to 84. No wonder I didn't feel well. She also pointed out that I was more anemic than usual due to the "recurrent inflammation" in my system.

I am eating:
brown rice
blueberries
raisins
collard greens
kale
broccoli
carrots
yams
apples
organic rice cakes
I also tried some honey and I had a few grapes