Taper Town: Initial Skirmish
Well, good. Who wants to read about an easy prednisone taper, anyway?
Hi, joint pain, muscle aches and stiffness. Remember that jet tub we had installed? That’s for you. It soothes peripheral neuropathy and the purple-white-red ache-numb-sting of Raynaud’s, too. And stress. Oh, yes. That bathroom remodel was worth every cent.
Heated floors. Good lord. Amen.
And welcome back, mid-afternoon blues, with your temp fluctuations, brain fog, and fatigue. And this inability to focus my eyes? Great excuse for a nap. My bed, my heating blanket beckon.
As for you, purpura, blooming bruises, hair fall and rashes, the canvas of my skin serves me, a message board. Show me what’s going on inside. Keep me posted sans pinpricks and vials of blood. There’s no unexpected news in you.
Bring it, body. I’m half a mg down, 4.5 more to go.
***
Comments always welcome!
Looking for more on this subject? The tags below or in the “cloud” to the right of this column will take you where you want to go.
bethlandau.com 
Hanging in – is that a cheer, a determined plea, an act of love? All of the above and many more unspoken, but known by you. All my love, mom
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Welcome to the neighborhood! I have been living here for several months, and have still not unpacked all the way. Sometimes, I have to start packing up again and then begin unpacking all over again a few days later. Down from 15 years, then 2 years at 10 mg, dropping over 1 year back to1 year at 5 mg. Now I am truly unpacking the rest of the way, if possible. I am a practicing agnostic about the likely success of complete unpacking, but determined to try. Previous months… 5/4.5/5/4.5, then 4.5, then 4.5/4/4.5/4 and currently 4. Next will be 4/3.5/4/3.5 and so on.
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What a long journey for you! I understand exactly what you mean about “the likely success of complete unpacking.” I’m aiming for that, but the longer I’m here in Taper Town, the more I wonder about it. Would you like to share how you’ve been able to do that? Steroid-sparing drugs? Fluctuating disease activity?
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Ugh. That sounds horrid. I hope the rest of your taper goes better.
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Thank you, Diana.
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BL… How? So far only by taking baby steps and a supposedly steroid sparing (SSS) drug. Long story, short answer.
Long answer… I have been treating lupus for almost 25 years. For the first few years, plaquenil and occasional steroids only.
With loss of a loved one and grief came a year long whopper flare, CNS involvement and a ruptured abdominal artery followed by ten years of “SSS” methotrexate and imuran, but couldn’t go below 5 mg daily prednisone without flare.
Next came liver involvement, and stopping the SSS drugs, and a clinical trial of Rituxan followed by almost 5 years of almost remission, but still stuck on 5 mg of daily prednisone.
Next, a major remission-ending stressful life event and tons of steroids but since previous clinical trial ended w/o FDA okay for lupus, spent next 9 months on unsuccessful insurance appeals and stuck on minimum 10 mg daily for 2 years.
Then, in March 2011 FDA okays Benlysta – first new lupus drug in 50 years. After 1st year on this slowly working “SSS” biologic I finally have “quasi remission” and spent 6 months dropping 1 mg daily per month down to 5mg. I was so proud of myself, and didn’t dream I would have to go further.
Then, after 2 years Dr. tells me I am his last remaining lupus patient on Benlysta who is still on daily prednisone. It’s time to try to get off completely. He reminds me part of the “sell” to the FDA for lupus is due to its “SSS” properties, so we have to try. I tell him I don’t believe it will work, but I will give it a try… it will be a new “adventure”… so I negotiated .5 mg drop in daily dose per month.
I have been 2 months getting down from 5 mg to 4 mg. Tomorrow, I start 3.5 mg and 4 mg alternate days and I am dreading it. Then each week will pull one more 4 mg day out each week till I’m at 3.5 daily. I haven’t been this low in almost 20 years. I dread adrenal distress and CNS flare. I still don’t believe yet. LA
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What a saga! Thanks for sharing — you are a lupus vet! Most people don’t understand how emotional stress, like physical stress, can trigger serious medical emergencies. It’s counter to how western medicine traditionally approaches illness. Many of us know, however, that the mind-body connection isn’t new-age nonsense; it makes perfect sense.
I’m rooting for you as you attempt to taper further. Each half mg down is a huge victory.
I’ve been thinking about Benlysta lately, too, so thanks for the feedback on that. 🙂
Fight on!
On Sun, Nov 10, 2013 at 10:58 PM, Beth Landau
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No problem! If you are interested in more about Benlysta, please feel free to read my posts on it. The articles where Benlysta are discussed are all linked in chrono order on a special page on my blog “Benlysta Journal” @ http://lupusadventurebetweenthelines.wordpress.com/benlysta-journal/ and there is information directly at Glaxo Smith-Klein and a copay assistance program that covers my $125 per infusion co-pay.
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Excellent, thank you. And for anybody who didn’t catch that, you can learn more about the lupus drug Benlysta here: http://lupusadventurebetweenthelines.wordpress.com/benlysta-journal/
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