Saturday, February 22, 2020

When Health Is The Focus Again


It’s been a while. Mainly because my health hasn’t been the center of everything. It’s so easy to write when things aren’t going well. It’s harder to write when they are.

In the last two years, I bought a house and got married. And of course, lupus and rheumatoid arthritis have been there and figured in. We bought a ranch because I didn’t want to be forced to navigate stairs if my health declines. A lot of what went in to planning our wedding was done with chronic illness in mind. But even so, those events were at the center.

Now, due to circumstances beyond my control, my health is front and center again. Several months ago, I found out that Quinacrine was no longer available – more about that in another post. As a result of this, my rheumatologist suggested that I go back on Plaquenil. I had been on it before, with my previous rheumatologist, with little success. I told my current doctor that, and he wasn’t convinced. Even when I told him that I had been taken off of it due to elevated liver enzymes, he told me that was incredibly rare with Plaquenil.

So I played the game. I started taking Plaquenil again, just to prove a point. And prove a point, I did. Pretty much every side effect that comes with Plaquenil, I had. I had headaches, extreme nausea, and severe itching. I switched to taking the medication at night instead of the morning and that helped with the headaches and nausea, but I continued to have extreme itching all over my body.    

When I told my doctor my symptoms, he told me that I must have an intolerance to Plaquenil and that I should stop taking it. He didn’t offer any other options. Well, other than telling me that I could make a killing if I could find a way to manufacture Quinacrine myself.

And with this situation, I feel like nothing has changed in the 12 years that I have been sick. Because of my “overlap syndrome” of lupus and RA, many treatments aren’t an option for me. Methotrexate didn’t work and caused elevated liver enzymes and low white blood cell count. Cellcept and Tacrolimus were no good either, for various reasons. Humira caused me to go into the worst lupus flare I’ve ever experienced and so that means that typical biologics for RA are basically off the table for me.

So for now, I’m on Imuran and that’s basically it, at least until I want to get pregnant. And then the jury is out because my rheumatologist and gynecologist disagree on whether I can remain on Imuran during pregnancy. More than likely, I’ll have to give it up, too.

And then where will I be? The ultimate test. How will I be on nothing at all? Will I be able to function?

It’s beyond frustrating.

And right now, I don’t feel great. My labs don’t look great. It all feels like a crapshoot. There are no clear answers or easy decisions. There’s just better or worse.

My old rheumatologist used to measure progress based on whether I was having more good days than bad days. For most of the time I saw him, I was having more bad days than good. But things got better. And I’ve maintained that. Going off of Quinacrine and back on Plaquenil changed things. Suddenly, I was having more bad days than good.

So for now, I wait. Wait for solutions and treatments that don’t exist, wait until the answers become clear to me.

3 comments:

  1. Leslie, I am so sorry to hear this. After I read your blog I recalled a buddy of mine who has lupus and I asked her if she was using or knew how to get Quinacrine. She gave me two ideas, these are them. No idea if it will work, or how long if it does:

    https://www.sigmaaldrich.com/catalog/product/sigma/q3251?lang=en&region=US&gclid=EAIaIQobChMI_9vj3tfm5wIVFqSzCh3NbwbNEAAYASAAEgIIvvD_BwE

    https://www.caymanchem.com/product/15041/quinacrine-(hydrochloride-hydrate)

    They both look to be off shore sites so do be careful.

    I wish you the very best.

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  2. It's sad when you hit a wall you can not get over. It's a mind game; severe mind game. No, we cannot ignore it but, activity to benefit other parts of your life is a distraction. Not to ease anything but your thoughts. It's not good for our health to be negative. It's hard. Very hard, to push it aside and just do the things you can do and when a negat thought or pain comes, throw it out and continue thinking of or doing something post. Doing for others even a note of thanks and gratitude for these practicing doctors would be a post. Their hands are tied as well. Not to compare or lessen the pain and severity, bit it's like a never fails. You find something you like and the discontinue it
    You find something that works, then insurance won't cover anymore visits nor maintenance visits. This is a cruel system and it only gets worse. I sometimes even think about the little things like lipsticks and nail polishes too. You love it and now you never can find it again. Continue your journey in greatness for your heart and health
    At night write 3 blessings for your day. Pray, a lot. Visit JW.ORG for so much more comfort then you ever thought was out there. No kidding. It's a life saver. In my prayers hi ey. Hand in there. You CAN do this!!!

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  3. Hi, Any thoughts on trying LDN?

    ReplyDelete