Will anticipation lead to a bigger let down?

If you’ve been following along on my blog, you know that I switched to KU med (teaching hospital an hour away from where I live) last October. This was after two years of incorrect diagnosis, figuring out correct diagnosis and 8 different medications that either didn’t work at all or, even worse, I reacted badly while on them.

Ever since my first appointment at KU med with the rheumatologist, he’s been talking about putting me on rituxan. It’s an infusion treatment that I’d have to go and have put in through an IV at the hospital once a week for four weeks and then it would (hopefully) work for 6-12 months before I need it again. At least that’s the hope and plan.

That conversation began in October. However, it’s now March and the treatment still hasn’t been ordered. I talked about the reason for that in my last post – the constant testing and looking for “justification” for the insurance for ordering such and expensive treatment.

The last appointment with the rheumatologist left us with him waiting until the skin biopsy results came back before ordering the rituxan treatment. When I called his office last week after talking to the neurologist, I described how she and I agreed that a skin biopsy isn’t appropriate given my symptoms, canceled the appointment for that and set an appointment for a muscle biopsy. I left a message with the nurse asking if he wanted tog o ahead and order the rituxan treatment since it would’ve 8-12 weeks before the muscle biopsy results came back (4 weeks until the biopsy and then 4-8 weeks for results, according to the neurology office).

The rheumatology nurse called back and said that he wanted to wait until the biopsy results came back. When I questioned it because it was going to take so long before that happened, she said that in their experience it’s more like 2-3 weeks for the results.

So at the least we’re talking about 6 weeks (4 until biopsy and 2 for results), at the most 12 weeks.

That takes us to some time between mid-April through the end of May for the results to be back. Then, once the results are back he has to give the order, have it approved by insurance (hopefully the first time and not have to go round and round with them to get it approved…when I first went on biologics at the end of 2012 it took almost two months for them to be approved and get the prescription filled) and then after it’s approved we have to wait a week or two for them to get me in for the first infusion.

So at the most hopeful side, I’m looking at the first infusion the beginning of May…worst case, into July.

Then after I get the first infusion it can still take up to 3 months to see if it’s really going to be helping me. Obviously not all treatments work for everyone as I’ve been on several already that we’re miraculous for others yet didn’t do anything for me.

Now I’m out to July – October before I know if it’s working for me or not.

That’s a full year from when I first saw the KU doctors. And that’s a full year just to see if the first treatment they’re recommending is going to work or not.

That’s a full year of fatigue, muscle weakness, fine motor control loss, pain, and emotional toll with no change in my treatment at all even though they know it’s not benefitting me at all.

That’s a lot of waiting and anticipating. All of these appointments, all of these tests, all of this time, money and energy poured into the hope that this treatment will help. A year (at the least it will be 9 months) of build up, waiting, hoping, praying.

And what if it doesn’t work – or worse I have a bad reaction to it (people do and it wouldn’t be the first time I had a reaction to a medication obviously), then what? There aren’t any other treatments out there for Sjogren’s that I haven’t already tried. And even if there are they’d be experimental or drug trials. If it took a year to get to this one (which is “off label” treatment for Sjogren’s, meaning it’s FDA approved for other conditions but not this one although there is research literature showing it has helped patients with this one – which is why the doctor feels the need to justify it to the insurance), how long would it take to move forward with a next treatment?

I was more hopeful when this journey began. I knew I might not find treatment that worked for me right away, but 3 years after my first diagnosis I’m still looking…and in the meantime getting worse all the time. After trying and failing to get any benefit from 8, the hope for the next is harder to sustain.

I’m trying to temper the hope that it will work for me (I really do want to be hopeful) with the fear that it won’t work. I feel the need to temper the hope because I feel like if I get my hopes too high it will just be that much worse if it doesn’t work. I have fear because I have a feeling it will be crushing to have waited so long for this one and feel like I’m putting so much hope into it, along with the fact that it really is the last treatment they use for Sjogren’s, so if it doesn’t work there’s not a clear path of where to go next and that’s scary to me.

3 thoughts on “Will anticipation lead to a bigger let down?

  1. Oh, I do hope rituximab helps you! Last month’s article in Annals of Medicine (http://annals.org/article.aspx?articleid=1829791) were not that encouraging in the aggregate, but then, the results would apply to an “aggregate” patient. There seems to be as much variability between people with the same diagnoses as there is for people with various CTD diagnoses. What works or does not work seems random. For a scientist, that’s frustrating.

    I did not think my first two rituximab infusions helped much, but then I got worse 6 months later. Unfortunately, I had a reaction to the next infusion, and neither hydroxychloroquine nor methotrexate have helped as much since then. When I take MTX I feel hung-over the next day. Taking the pills is not as much fun as a night on the town, so it seems a cheat..

    Hang in there! While the doctors may think the measure of success is when the patient stops complaining, I think it’s when they actually feel better! 😉

  2. You mention that if this doesn’t work, you’ve “tried everything”. I think there may still be some other options. Another immunosuppressent is Cellcept. It worked like a charm for me for fatigue, though I am prone to infections, and it caused me to get a serious one. However, I have immunodeficiency in addition to Sjogren’s. I couldn’t continue.

    Then there’s playing with diet – some people improve with gluten free or dairy free, or other diet modifications.

    And as I read your posts, I worry the most about the muscle weakness. Luckily, I haven’t had to deal with that, but that doesn’t seem like a commonly reported aspect of Sjogren’s and I continue to wonder what it might be, and most importantly, what can be done about it. Of course, you must feel the same way.

    If there’s an element of neuropathy involved, something like gabapentin might be relevant.

    I should mention I’m not a doctor or medical person, just another Sjoggie who has tried a lot of things.

    1. The muscle weakness is what worries me, as well! I had an MRI yesterday of my thigh and have a muscle biopsy scheduled for the 26th. The neurologist seemed reluctant to schedule them as I don’t have the elevated muscle enzymes that typically occur with myositis, but then again…every person is different with these autoimmune diseases (and the enzymes aren’t elevated in everyone!), so I wanted the tests that matched my symptoms despite the lack of elevated enzymes!

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