Isle Royale coastline, Michigan, Lake Superior

AT THE WATER’S EDGE:

LIVING LIFE AND LEARNING ALL I CAN ALONG THE WAY

The Saga Continues…

I had a bit of déjà vu this
week.  If you’ve been following my story,
you may recall the start of my
“Sed Rate Saga” — my hesitation to get my blood drawn back in November and the
immediate call from my doctor’s office after my lab results came in because my
inflammation was high.  That’s what
prompted
my switch from Enbrel to Humira to treat my rheumatoid autoimmune
disease (aka, rheumatoid arthritis).  I
was told to try Humira for one month, as an every other week injection, then to
get my labs done again.  After
a month of Humira, I felt no different.  Not
necessarily any worse, but not better, either. 
So, I kind of wanted to play a guessing game and try to predict what my
sed rate would be (sed rate, or erythrocyte sedimentation rate [ESR] is a
marker of inflammation).  My labs from
November revealed a sed rate of 41. 


So, I went to get my blood drawn
on Monday, figuring my sed rate couldn’t have changed too much from last
time.  On Tuesday—again, less than 24
hours from when I had my blood drawn—I got a call from my rheumatologist’s
office.  My sed rate was still high, and
according to the nurse had held steady at 41. 
I haven’t seen the paperwork to verify that it really is exactly the same as it was two months
ago…but it really wouldn’t surprise me. 
At any rate, this means that Humira is not working as well as we’d like –
in fact, it’s not working any better than Enbrel was.  What’s interesting is how well my sed rate
seems to correspond with my symptoms. 
Being the nerd that I am, I decided to chart out the data that I have of
my sed rate over time, with some annotations:
At any rate, because my inflammation
is still high, I will be upping my dose of Humira so that I will now take
weekly injections.  This week was
supposed to be an “off” week; but, instead, I will be taking my next injection
tomorrow.  I was told to give this weekly
therapy three weeks, and if I’m not feeling better after that to call the
doctor’s office.  I have an appointment
scheduled for March, but if the Humira doesn’t kick in in the next few weeks,
the doctor wants to see me sooner and discuss switching to a different class of
biologic drugs (the only ones I have tried work by targeting a protein involved
in immune function called TNF-α; there are other drugs that target different
components of the immune system).
I have some mixed emotions about
this.  When I started Humira, I was kind
of under the impression that I should be doing it as a weekly injection since I’m
taking as a monotherapy, rather than combining it with methotrexate.  So, that switch doesn’t really surprise or
bother me.  What scares me is that I have
only three weeks for my body to get in gear, or we’ll be looking at a whole new
class of drugs—to which I have zero idea how my body will respond.  I don’t really want to go that route, but I
know I need to do what it takes to keep my disease activity under control and
to try to halt the progression.  I also
am feeling very grateful toward my doctor right now.  I appreciate the fact that he actually tends
to want to be more aggressive in treating my disease than I do (!) – and he is
not willing to let me stay on a drug that is ineffective, when there are other
things we can try.  All I can do for now
is pray that Humira kicks in strong, and
soon!

12 responses to “The Saga Continues…”

  1. The amazing thing is, the docs themselves should have been trained to do this, and required the partnership of their patients as part of the process (I.e. tracking). SOP. It's good you've taken the initiative to be fully responsible for your own best care. Might I suggest adding a scale on the right which ranks pain (eg scale of 10)? If pain is primarily wrists, that's what the scoring would reflect. Then, if you really want to get fancy, add a 3rd dimension to chart ACPA levels. If you're ACPA+, taking a biologic w/o methotrexate may be too much of a challenge for your immune system. I realize child bearing may be at issue.

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  2. Thanks for your comments, Bob! Agreed – wish it was SOP. Did you read about my hatred of the 1-10 pain scale? 😉 You're right, though: it would be helpful to quantify that, too. Unfortunately, I only have one specific ACPA read (315 at diagnosis), so nothing to track over time. I'm sure my charts will get fancier as I go, though!

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  3. This is fascinating we should all have charts of our progress and responses to meds it makes it so much easier to understand, what a shame it falls to the patient themselves to do this. Since joining twitter and following so many of you and your journeys I am amazed by the knowledge you have and encouraged to be more pro active in my care. It works slightly differently in the UK under the NHS. Am thinking of digging out all my medical notes and seeing what I can come up with…thanks for the inspiration Barb@RAsucks

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  4. Be sure to take that chart to your next appointment. Your docs will appreciate the insights!

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  5. I love that your doctor's as determined as he is, but… I thought it took Humira 2-3 months to kick in? Is that when you take it the traditional way and you're accelerating it, so it'll be possible to tell how it's working sooner? Are your joint symptoms controlled? I'm doing a bit of geeky, yet completely unscientific research. Based on my joints, my disease is well-managed, but my sed rate is still if not high, then noticeable. My rheumatologist seems to just shrug it off as that's the way my body works and is happy with my status, but I want to poke around in is it a little before I decide to be happy with it, as well.

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  6. Thanks for your comments, Lene. My doctor originally wanted to give Humira a 3-month test, though I think he expected to see a change within 4-6 weeks. After 3 weeks at the new weekly dose, it will be 2 months since I first started Humira. I was kind of surprised that he would cut it off at the 2-month mark, but apparently if he doesn't see a difference by then he wants to look at other options. 3 weeks at the new dose does not seem like a long time…which is why I'm really hoping it kicks in fast! I am sure that Humira is doing something because I don't feel horrible. It's just not doing any better than Enbrel was. The doctor is concerned that my wrists are trying to fuse, so I think he wants to be proactive to prevent that from happening (which seemed like a good idea to me!). I have symptoms elsewhere, but my wrists are currently the worst.

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  7. Thanks, Barb! I'm really just starting to be more pro-active, but it feels good to have some of the information in my own hands. I want to be able to understand my disease progression and have all of the same information as my doctor so we can jointly make informed decisions.

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  8. Yep, everyone's experiences and docs are so different. My SED rate at 38. Doc said that's “not really high”, but went along when I suggested I wanted to add a third dmard. And frankly, I think one of my wrists has already fused to some extent (hand surgeon last year said I wouldn't need bone grafts…). Can't add another dmard yet though, cause all of a sudden, the ol' liver enzymes decided to start creeping up. Oh well, more slow plodding along….Chelsea

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  9. I have no idea what my sed rate is. But I feel fine so I don't worry about it. My rheumy is VERY conservative but very proactive so I know if I started getting elevated results back she wouldn't hesitate to switch my meds.

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  10. Hi, Dana! Thank you for your blog, it makes me feel better reading it! Last Sept I had a surgery cancelled at the last minute when my pre-op blood work revealed a sed rate of 94. I was brought into my rheumy who put me on Symponi. Blood work I had in December showed I'm “down” to 54 which does not make her happy so now I'm going to start Enbrel in Feb and she wants me to try to do without Plaquenil (which I've been on for years). I've been off for 3 days and I hurt like CRAZY so I think I'll be back on it soon! Every inch of me hurts now and it's so discouraging but I know it could be so much worse. Thank you again for your blog! Rosemary DeBurgo

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  11. Hi Rosemary – thanks for your comments! I'm so sorry that you're still experiencing pain and inflammation. I hope that you and your doctor are able to find the right treatment treatment for you. Blessings!

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  12. Hi Dana- My name is Pat, I am 62 and live in NZ.(I also have a daughter called Dana!) It is great to meet someone who is pro-active with their Rheumatoid. I have also had call from my Doctor after test which I appreciate. My Doc is a GP 3 days week and she also has a natural clinic 2 days a week.(a Herbalist) I had Palindromic Rheumatism for 5 years and now Rheumatoid for one year. So far only on prescribed Herbs, and 3 mgs prednisone and 400mg Iprophen. I have a record of all blood tests and have kept a chart of flare ups. I needed blood tests before xmas (we were about to go on holiday for 3 weeks) but wanted to wait because I knew the CRP would not be good…it wasnt good but my Ferriton Iron level and Rheumatoid Factor had improved. I feel good- especially after 3 weeks in the sunshine! Still have some inflammation in both wrists, fingers and right ankle. Rheumy wants me to try Methotrexate..Still thinking about this. Thank you for your interesting posts- my Doctor and Rheumy definitely like me taking along charts. Take care

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