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Posted By : Butterflake - 1/12/2017 5:51 AM
Hi Everyone. I've had two meltdowns in the past three weeks. In October x-rays showed I don't have cartilage in my right knee (runner 20 years plus prednisone daily) and bursitis in right hip. Orthopedist injected both with what looked to be 20-30 cc of corticosteroid that caused me to become crazy jittery and once again landed in bed and did nothing for my knee pain. Weeks later took my first injection of Prolia for osteoporosis and could only move enough to potty and back to bed. Weak, painful, sucked.

Forward to December sleeping 15 hours a day. Developed nodules on palms and red spots on legs, arms. Saw dermatology yesterday who knows autoimmune and she said she thinks I have a cyclical virus related to my Benlysta infusions. All of this just nudged the meltdown.

I've been taking Nucyenta, a narcotic, for my knee two years and CVS/CAREMARK will no longer approve it so I've made countless phone calls to Blue Cross Federal, CVS/CAREMARK, my pain specialist doc, and visits to CVS. Hubby, who works for the same mega Federal agency that I worked for, found that changes have been made so that now I can't take Klonopin and Nucynta together like I've been doing for two years. So all these calls etc led to another crying jag triggered by "I just can't win syndrome." Do I give up the pain med for my knee or stop Klonopin that barely holds my anxiety at a sub-melt level (I already take two expensive heavy duty psychiatric meds.)

Lynnwood said something during my last meltdown, "It's a terrible thing when a disease takes over your whole life." I'm not expecting any answers. I'm not even expecting condolences. But I would like to know if any of you (who have read this far) have run into the same roadblocks I've run into with our continually changing, state of the art, don't give a darn about patients, pharmaceutical companies, and medical professionals. Love, Butter-flake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : Lynnwood - 1/12/2017 8:11 AM

So sorry you've started running into medication roadblocks. For some reason I started reading the Chronic Pain forum a few months ago, and there are several (most!) members there who have similar frustrations.

It's a terrible situation, and most end up having to make choices about which body part to treat, leaving the rest alone. I can't tell you how much that sucks, you already know that better than I do!

Anyway, just wanted to let you know I feel for you, and that folks on Chronic Pain share your situation - maybe you'll get some helpful replies posting over there?

Gentle hugs,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Melissa D. - 1/12/2017 8:16 AM
I really am sorry for what you are going through Butterflake, I can totally relate! I went through the exact same thing with United Health and Express scripts last year. I had been on Cellcept for years and then they decided last January I no longer needed it! What?! Who were they to decide I thought, so I went through a massive melt down. That was the first of several medicines that I had denied last year, I went back and forth with my rheumatologist and he told me that it United Health and a couple of other health care providers (don't recall the names) had been pushing back with medication combinations and what they were approving if a medication was prescribed and not specifically for that persons disease. You know how we get medications that overlap that aren't specifically for "lupus". Well, I was in a constant state of anxiety for the first 6 months of 2016. It really is sad that health care providers and pharmaceutical companies have this much control over our lives. When I was on Benlysta and IVG I continually fought the approval game, they will do anything possible it seems to try and get you unapproved. Little do they realize or care is more like it that the more they fight the approval, the more stressed we get, the more our disease flares out of control causing us to need more medications and the cycle spins out of control.

There really has to be some type of awareness brought to this madness we go through with changes to our healthcare each year. I wish I knew where to start. I tried talking to my state representative about it last year, but it went no where. I was just too tired to follow it.

Gentle Hugs

Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Posted By : Butterflake - 1/12/2017 11:12 AM
Hi Lynnwood. I don't know if I'll reply on Chronic, but I sure will lurk. Melissa I'm so glad you replied. I'm not the only Lupie! Hubby and I frequently say, "The physician wrote the script, let him/her decide." As for your comment that it only makes us worse, I've been ranting "Would they rather pay to have my knee replaced?" I don't want surgery (to say I almost died after one surgery is a gross understatement) but that's one of my options. You're right that we need an advocate because all of our energy is used to fight Lupus.
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

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