Friday, March 16, 2012

Benlysta: Week One


So....sleeeepy....zzzzzz
             Because Benlysta is a new drug, and not many people have had a chance to try it yet, I’m going to try to do regular reports about how my treatment is going. This is not out of a narcissistic belief that everyone in the world wants to know the ins and outs of my treatment, so much as a desire to let other people who might be considering this option know what they might expect.

            To start off with, I should just remind people that Benlysta can take up to three months to take effect, so after one week I didn’t expect (or experience) any improvement. As most lupus patients know, this waiting time is pretty much par for the course for any immunosuppressant.
           
             Thus far, my main side effect from Benlysta has been overwhelming fatigue. I sincerely hope that this is a temporary thing while my body gets used to the drug. I tire easily, and the omnipresent fever returns if I exert myself at all. Needless to say, I am very grateful to be able to work from home most of the time these days.

            What many people (including me, up until recently) don’t know is that doctors are not supposed to prescribe Benlysta by itself. Apparently, the clinical studies showed that it is more effective when combined with some more traditional lupus treatment. This was, in fact, the reason my insurance company initially rejected my application to be covered: my treatment plan at the time did not include another Lupus drug. So being on Benlysta doesn’t mean you get to skip all of the other nasty drugs they give us, at least at first.

            My rheumatologist’s solution to this was to add low-dose prednisone to my treatment regime. For those who don’t know, prednisone doesn’t work for me, and I have rather serious psychological side effects from it. The hope was that my being on such a low dose would prevent this side effects. That worked for a while, but I found this week that the constant headache and other problems were returning. So I called my rheumatologist, and she agreed to let me taper off the prednisone. That’s the good news. The bad news is that, instead, I’m going to go back on chemo/methotrexate while we wait for Benlysta to take effect.

            As bad news goes, this isn’t horrible. I am in a significant amount of pain from the Lupus, and I know from experience that the chemo does help a little bit. Unfortunately, it is chemo, albeit at a low dose, and as such is not a lot of fun. I didn't really need any more headaches, nausea or hairloss, but I'll survive. And since tonight I was awoken by a horrible bout of nausea (and I don’t start chemo until tomorrow), I can’t help but wonder how much worse the chemo could make things.

            So, that’s where things stand. It will be a while yet before the Benlysta has a chance to take effect. I don’t believe it will be three months; I expect it to be in the range of 1 to 2 months instead. And I haven’t experienced any horrible side effects from the Benlysta, just a lot of fatigue. So, unlike most immunosuppressants, at least it’s not doing much, if any, harm in the meantime. I just have to be patient, eat my gluten–free ice cream, and restart the good old chemotherapy drug. I’m still upbeat, because I feel like there’s a light at the end of the tunnel for the first time in a very long time.

17 comments:

  1. I'm glad they're letting you back on the methotrexate after all the previous problems--anything that helps. And really glad you're going off the pred. And thank you for the play-by-play on the Benlysta, since that's my next option.

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    1. I really wanted to go back on CellCept and lower dosage, since it has a lot fewer side effects than methotrexate. But my rheumatologists doesn't think it's safe for me, so methotrexate it is.

      I figure a lot of people are looking at Benlysta as a possible/probable next step, so I will try to keep up the play–by–play on a more or less weekly basis, at least at first.

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  2. Have you considered Plasmapheresis?

    Plasmapheresis and 6 months of chemo has helped me a lot. I am now tapering off prednesone and have hydroxyquine as a maintenance drug. It's all trial and error until you find something that works for you.
    http://www.mda.org/publications/PDFs/FA-Plasmapheresis.pdf
    http://autoimmuneillness.blogspot.ca/2011_05_01_archive.html
    I pray you find healing and comfort.

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    1. I haven't tried (or heard much about) plasmapheresis. One of the reasons I'm leaning towards going to Johns Hopkins over Harvard for my MPH is that Hopkins has a Lupus Center, and I'm hoping that they might be able to offer more in terms of clinical trials, new medications, etc.

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    2. (Sorry, I should clarify, I haven't heard much about plasmapheresis in the context of treating lupus).

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  3. My case was diagnosed to be lupus when I was in hospital, overlapped with dermatomyositis and polymyositis and idiopathic pulmonary fibrosis etc etc etc... My lungs were literally gone from heamorraghing (spelling). Plasmapheresis was the last straw and had never been tried on anyone in my condition. I had nothing to lose so I gave it a go. After 14 treatments, 6 months chemo, my lungs are much better, lupus is in remission, all the myositis are going down. My cpk level is down from 7800 and seems to be stabilizing between 220 and 250. And 11 months on, my breathing is much better with little to no pain and managing to do more things on a daily basis - hoping never to experience a flare-up again.

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  4. Oh, I would only go to Harvard for the name! Earning your PhD from Harvard is like striking gold, but you have probably had the debate with yourself hence Hopkins :)

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    1. Wow, sounds like the plasmapheresis has really helped you! I'm so glad you found something that did!

      Harvard has a better name in the general population, but people in the public health field (in which I'm hoping to enter) have universally said "Go to Hopkins, it has a much better program." Hopkins' MPH program has consistently ranked #1 in the country for the past five years. So in a specialist's mind, it is like striking even better gold!

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  5. Big fan of your blogs!!!! I also have Benlysta in my near future....Thanks so much for sharing your experience and knowledge....I am patiently waiting for the next one to hit my inbox....all the best

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    1. Thank you so much for the positive feedback! Sometimes I'm not sure whether people actually read what I write, so it's nice to hear that you do! :) I'll try to keep you (and others) posted on how the Benlysta goes!

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  6. I'm sure you would rather be on the cutting edge of science in some other way than trying out a new medication to fight something awful. But if you must, you might as well wring every bit of knowledge out of the experience.

    I like Cambridge better than Baltimore, but I think Johns Hopkins actually has the better medical reputation.

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    1. Well, not to brag or anything, but I actually am on the cutting edge of science in some other way. My last paper was published in a very, very good journal because it represented the first crystal structure of a brand new family of crucial enzymes.

      Baltimore wouldn't have been my first choice of places to live, but Hopkins definitely has the better medical reputation. No question there, at all.

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  7. I'm doing a facepalm here--yes of course--it was Cellcept you liked better, not the methotrexate. Lupus fog has hit words hard for me of late.

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    1. No worries, I totally understand. Yes, methotrexate is nasty stuff. If it weren't for the anti-nausea drugs I already have we'd be back in dry-heave/maybe even throwing up land. That plus the overwhelming fatigue. Luckily, not so much of a headache (yet) this week. Yeesh, I hate this stuff. And so will the neighbors who managed to wake me up enough times with their party to have me call the police on them.

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  8. Which Journal? Were you doing X-ray crystalography? My husband assures me that you can't predict the way an enzyme will fold based on its structure. You have to look at it to tell.

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  9. I was diagnosed with SLE, JRA and Fibromyalgia when I was in preschool (which was very odd back then). I took plaquinel and so many different medicines over the years. As my lupus got worse, I ended up having a few strokes due to something called antiphospholipid syndrome which happens to those that have lupus causing me to throw clots in my brain. So they put me on wafarin (it's literally rat poison) to thin my blood. After my blood work for the lupus showing over 200 with my ana, they offered me to try Benlysta. Of course it was honestly the only thing that mite help since I tried so many other things over the years. Last month I had my first infusion and I did have a few side effects such as a sore throat, ear ache, and fatigue. After about 3 days I woke up and my boyfriend said "OMG you just got out of bed without needing help stretching your arms and legs". Within a few more days my energy level got better and I have never (ever) had a day without swelling in my joints or severe pain but it went away so fast. I have had 4 infusions and it does seem to be helping me a lot. I do still take Plaquinel 200 mg twice a day and Imuran 50 mg twice a day. I weaned me off the steroids from 10mg to 0 and I do feel so much better. The only down side of the medicine is that it's extremely expensive but if you cannot afford the medicine or the insurance denies it, you can contact the company and ask for assistance (or the doctor can help too). One good thing is that the confusion and lupus fog has gone away and my brain is working great for once:) So I recommend trying it for at least a month or two if you can , especially if your lupus is out of control. Hope that helps:)

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    1. I ended up staying on it for a couple of years. I found it a little helpful, but not as dramatic as your experience. Glad it worked so well for you!

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