Saturday, 16 May 2015

Desperation

Alright. So, I know one of my past posts made it very clear that I was not going to see another rheumatologist anytime soon. I made it clear that it was not worth it at all to me, and I would not be seeing a new one until I was completely desperate.

I saw a new rheumatologist a few weeks ago.

As my academic semester winded down, my body began to flare. My feet are giving me the most trouble, and wearing shoes has become a new form of torture. But all my joints are beginning to ache a lot and swell. I've found myself stuck in a few locations because I was too tired and sore to move. Additionally, I had to leave class twice as well, once just to ice my foot (I've rarely resorted to ice).

So, I made an appointment with a rheumatologist: an adult rheumatologist, who works at the same hospital (just not in the pediatric wing). She received wonderful reviews online, so I thought I would take the plunge as I became desperate. Her reviews did not deceive either; she was very nice and listened to me. She was extremely concerned that not only did I get dismissed by the last rheumatologist, but that I had problems that were completely ignored previously. My new rheumatologist reassured me that I do have disease activity- which speaks a lot since it was a very good day; even on horrible days, past doctors have said I show no disease activity at all. She sent me for a blood test that required 1/4 of my blood (at least), and enough x-rays to guarantee I will glow in the dark one day. She also put all my patient information on my online patient portal, and all my test results were posted as they came in.

It turns out that I'm worse off than the doctors ever realized. The rheumatologist called a little less than a week after my appointment. My bones have developed osteopenia (they are not as dense as they should be). My feet are a bit damaged. I've also been borderline positive for lupus for a year and a half, and was never told. It was probably thought to be drug induced lupus caused by the Enbrel, however my ANA rose six months after stopping Enbrel. But as my new rheumatologist put it, "You haven't developed lupus yet."

She gave me options. She told me I could certainly go on Enbrel again, but she would prefer that I try something else first. So, I'm going to start sulfasalazine very soon. I see her again in two months to see if sulfasalazine worked. If it doesn't, I'll probably go back onto Enbrel. I'm glad she gave me options and made it clear that it was up to me what I want to do with my body.

I think it's the start of a wonderful physician-patient relationship.

4 comments:

  1. Oh, this is wonderful news, Elizabeth! Not that you've been feeling so awful and been in such pain--that sucks. But finding a new doctor who'll listen to you and validate how you've been feeling, and who'll work with you to find a way to slow your disease and relieve at least some of your pain--that's amazing. I am so happy for you!

    I hope the sulfasalazine helps. I'm taking it along with leflunomide, plaquenil, and Enbrel. The biologic is the most recent, as the other three seem to be losing their punch.

    Best of luck to you. And a big ol' hug, too. :o)

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    1. Thanks Wren! I'm so thankful too! I really hope the sulfasalazine works, but I might be in your camp of taking DMARDs and a biologic too- no big deal as long as it works! :) Has the Enbrel helped?

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  2. My 12 year old daughter has been on Sulfasalazine for the last 2 1/2 years and it has been a life saver!!! It has worked better than Orencia, Remicade, or Methotrexate ever did for her. They say JIA Spondy patients see better results with Sulfa....and it has certainly been true for my daughter. Now, not all her pain is gone, but it certainly is manageable (will take it!). Hope it works well for you. No monthly blood tests either (only when you first go on it and if they up the dosage)...and the drug has a long track record, too!!

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    1. Hi Jenny! I'm so glad your daughter has done so well on Sulfasalazine! :D

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