Viewing entries tagged
enbrel

Comment

I Finally Went To A Naturopath: Part 1

You guys. I don't know where to start. I finally went to a naturopath after many years of considering it. The fact that insurance doesn't cover it put me off and I thought I was managing things pretty well on my own. But the past few months my RA has been feeling pretty crappy, and even though it always feels bad in the fall I always have a desire to rid myself of all of this completely, from the source, instead of just telling the symptoms to chill til they come back. 

So I went! I found this amazing woman who is literally a block away and part of UPMC, Pittsburgh's largest healthcare group, and she actually agreed to talk to me on the phone for ten minutes before I scheduled my appointment. I wanted to make sure I was seeing someone whose diet plan for me would be on par with my own. There's a bit of a fad happening right now called the Autoimmune Paleo (#AIP) diet and I'm just not into it. I know from research and my own experience that meat is an inflammatory. And the whole point of eating to cure an autoimmune disease is to get the body to stop being inflamed. So that just doesn't add up, does it?

Anyway, my first appointment exceeded my expectations. Her office was more like a lounge than a doctors office. She started by asking me to just tell her my entire medical history and took amazing notes. For the sake of me not rambling on forever with all the details, here are the highlights of what we covered in the two hours she spent with me (yes, seriously, two hours) and $175 I spent on the first session:

  • Goal: First she asked me what my goal for being there was. I told her my conventional medicine (Enbrel) is working but I know deep down it's not a good idea longterm. I know the side effects heighten your chances of lymphoma by 3x and being so young, I know that the longer I continue on the medicine, the higher those chances probably are. I told her my goal was to be well enough that I could lessen my medicine intake over time until I possibly don't need it anymore. She was supportive of this and told me she would never ask me to stop taking a medication without having me talk to my rheumatologist about it first. At this point, I knew I liked her. We agreed to not talk about when or if I'd ever be able to stop taking a conventional medicine but just kept the goal in mind to lesson the amount a bit at first.
  • Medical history: I told her all about my RA, family history, other misc. health problems like allergies, UTIs, frequency of colds, etc.
  • Supplements, vitamins and medicine: She had me bring in everything I was taking so she could evaluate it. She tossed my daily vitamin in the trash right in front of me, saying it was literally the crappiest of crap. I loved her for that!
  • Typical diet: She wrote down what I typically eat for breakfast, lunch and dinner. In this realm, I think I am a pretty easy patient for her since I'm already gluten and mostly-dairy free. She laughed when I said I made raw beet ravioli with cashew cream cheese for dinner the night before (I'll post on that delicacy soon!).
  • New diet recommendations: I had two options. An elimination diet challenge that would take me months of torture to take about 96 foods out of my diet and slowly add one back in at a time to see if it would cause my symptoms to flare. First of all, NO. Secondly, I told her it would be hard to notice an arthritis flare due to one food because I typically flare for a month and then don't for another. It's not a day-by-day thing. She agreed, so instead, I am going to do option two, a $225 blood test. I will do it at home by pricking a finger until I can fill five circles on a piece of card stock the size of my thumbprint with blood, let it dry and then send the kit back to a lab. The results will come back with 96 foods and graphs for each that measure how much that food causes an immune response in my body. Fabulous. Worth the money. I am waiting until January to do this to spread out the expense and also so I have all the holiday party junk food in my system. My doctor said that in order for the test it work its best I need to "eat all the foods" beforehand. Yes, she really said "eat all the foods." Gluteny-cheesey pasta cheat day, here I come. The test is called the US Biotek Antibody Assessment and you can read about it here
  • Health plan: Two days later she sent me a two page health plan that she typed up and sent to my email directly from her. It had instructions on where to buy the new supplements (I'll do another post on that soon), how to take the blood test, and a summery of the other things we talked about... like how she wants me to eat more fish. 

All in all, I cannot say enough. I ordered my first round of supplements and received them today. They were a bit pricey but I know she's going to get me back on track. I'm most excited about a strong anti-fungal with oil of oregano, garlic and caprylic acid that will rid my body of any bacteria or candida that could be lingering. Bacteria (from UTIs) and candida overgrowth can actually cause autoimmune diseases. I'm starting to think there's a chance that could be what's happening to me. Check out this article I found tonight that talks all about that and how to cure autoimmune diseases by curing the cause instead of putting a band-aid on symptoms. Its author is totally in line with what I'm planning to do with the help of my awesome new naturopath. Updates soon!

Comment

Comment

Today I'm Sassy As Hell & I'm Going To Tell You Why.

i’m writing this post-afternoon-16oz.-work-beer, so let’s just say life isn’t so bad.

and i keep writing sentences to start this post and then find myself holding down the delete button. i don’t want to complain. i really don’t have a right to. nothing is THAT bad. 

yeah, my foot hurts. yeah, i found out the “mass” or “thing” or whatever in my foot that started this whole crisis isn’t actually a mass at all. it’s just a super upset joint that’s swollen and receiving the brunt of this ra. it’s like the tiniest joint in my body (not really but, honestly, its a knuckle in my foot) that chose to get attacked first. and yeah, it’s probably going to be that way forever (if not worse, because there’s nothing to “get rid of” or “take out” now that we know this). fine. 

Comment

Comment

Reminders From My Rheumatologist

went to the doctor yesterday. he reminded me of many things i forget to keep in mind, so I’m writing them down this time:

— you probably wont have any heart or lung issues if your ra is under control.

— you probably wont become deformed or immobilized with joint damage if your ra is under control.

—you know if your ra is under control by the number of joints that are affected currently and how well you generally feel on a daily basis.

— increased cancer risk may just be a cause of the disease, not of the enbrel.

— you could get cancer from something totally unrelated anyway. you just stop the ra drugs, treat the cancer, and go from there.

— once again, you probably won’t get cancer.

— if the enbrel stops working there are at least 7 other drugs to try.

— new drugs are being made! including a pill that was just introduced in november. 

— you can’t really aim to feel perfect, you can aim to feel mostly good though. little things will always bother you, let them go.

— get a flu shot every year. you will not become paralyzed. it will protect your sad immune system.

— bloodwork every six months. a must-do.

— we have made progress. my ra is under control. we found a medicine that works. and it’ll work til it doesn’t anymore and that’s ok.

—we can consider my strength of disease as “in remission.”

— most importantly: doctors who remember the tiniest details of your previous conversations, and who know you by way more than your chart after only two face to face visits are absolutely irreplaceable and completely necessary. you can feel like your doctor has your absolute interest at heart.

Comment

Comment

Really Good Doctors #2 & Introducing Enbrel

it’s been almost six months since i’ve updated, and although i have a lot to say, i want to try to keep it concise. mainly because things are going well!

the major updates:

i dumped dr. d. — i found a new doctor, dr L, and i love him. he sat with me for an hour and said “tell me everything” as he wrote it on a blank sheet of paper. he held a meeting with numerous radiologists just to review my second foot mri and walked me through why it was so strange. he didn’t want to put me on enbrel right away until he understood my case a bit better. all wins.

i started enbrel — after about a month under dr L, my symptoms were coming back (changing seasons perhaps?) and i was getting frustrated. he didn’t know if we’d be able to even get enbrel approved for me since insurance companies require a certain degree of disease and number of joints affected to approve. dr L seemed to sweet talk them though because within a few weeks i was at his office with nancy-the-nurse who was helping me do my first injection. 

Comment

Comment

A Big Fuck Yeah To Lower Doses of Prednisone

there’s a lot going on and yet nothing going on at the same time but for some reason there is more than enough to say.

when i went off the prednisone completely, symptoms in my right foot (mass/nodule) and right knee came back within 48 hours. i also noticed a bit of swelling in my knuckles in the evenings. enough that i decided to go back on the 5mg prednisone every day. 

when i went in for my check up, dr. d basically told me that meant the plaquenil wasn’t working and i needed to try something else (i questioned this beacuse plaquenil is said to take 3-6 months to kick in and it had only been barely 3). since i am 100% against taking/trying methotrexate (i.e. cancer drug mentioned in previous posts with nasty side effects that you cannot drink while taking), he suggested sulfazalazine. sure. why not.

Comment