We Can’t Allow These Things To Happen! S... - My MSAA Community

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We Can’t Allow These Things To Happen! Step Therapy Fail First?

stepsforNeeC profile image
11 Replies

Does anyone receive emails from the different Multiple Sclerosis Foundations with the latest updates concerning policies affecting medications, coverages co pays etc. I actually read and share a little and reply because these “patient testimonials “ do matter! Once a year, during MS Month, a selected group are invited to speak in front of Government and Politicians so our voices can be hear! The point I’m so sadly getting to is this “ Step Therapy” - Fail First.” Basically, doctors knowingly prescribing a lower cost regime coarse of treatment before they go to what they know actually works best and most effectively! My Neurologist just tried this shenanigans. He wanted me to take a seven day course of steroids; Prednisone - I told him I needed an infusion! We live with this and know what the “fruit cake” we need!!! lol Humor in this, I wasn’t gonna to use a bad word! Stay cool and safe everyone. Life with MS 🙏 Blessings. NeeC

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11 Replies
kdali profile image
kdali

There's an equivalent dose of oral prednisone, and some people prefer it for a relapse or don't have easy access to an infusion center. Studies have shown no difference in effectiveness, except for with optic neuritis (no investigation as to why). It's a lot of pills though, and turns some off.

I hope you get your infusion soon and feel better!

Biggums profile image
Biggums

Greetings stepsforNeeC. The Prednisone is to calm down your immune system. Unfortunately MS uses the very thing keeps you from getting infections against you. MS attacks nerve centers by attacking the myelin. Think of a cord for electricity. The cord is insulated with rubber. Myelin is the rubber for our nerves. If taken away, could create paralysis or numbness. We have nine nerve centers and it can attack any one of them. There is no cure for this yet. All they can do is slow it down. Time is of the essence.

NorasMom profile image
NorasMom

It's an insurance thing. They just don't want to pay for the more-expensive drugs. Sooner or later these places need to understand that they're shooting themselves in the foot. They're CAUSING conditions to worsen and subsequently require more care.

CatsandCars profile image
CatsandCars in reply toNorasMom

I agree. They're not taking the long view; they're hoping by the time their decisions cause you to worsen and need more care, you'll have changed insurance and will be someone else's problem.

stepsforNeeC profile image
stepsforNeeC in reply toCatsandCars

Exactly! 👍

stepsforNeeC profile image
stepsforNeeC in reply toNorasMom

Yes and hurting us! Others like us with medical conditions that “brand “ not generic or something that is just too new with little FDA variables!

CatsandCars profile image
CatsandCars

The step therapy insurance companies inflict on people is unethical. My state recently passed a law banning it, thankfully. So contact your governor and your state representatives!

As far as your steroids go, that may not be what's happening. As kdali said, sometimes doctors will give you a ton of oral steroids that equal a solu medrol infusion. One of my neurologists offered it in smoothie form, but I asked for an infusion because oral steroids are hard on my stomach.

My last neurologist before this one had habit of giving me a ten day course of low dose prednisone, which was enough to make me feel lousy, but did nothing for my MS. I had a pretty unpleasant relapse and he didn't want to do an infusion. I asked him why, and he said "because the symptoms don't justify the side effects," which made me mad because it didn't answer my question. But now I'm pretty sure it was because high dose infusions play hell with your bone density, causing osteoporosis. When we age, if our balance suffers, or we have difficulty walking, it's not great to have brittle bones. I think in most cases, I would have chosen the steroids anyway, but it would be nice if doctors explained the risk to us, and let us make the choice.

stepsforNeeC profile image
stepsforNeeC in reply toCatsandCars

Wow, CatsandCars you just opened another set of “proverbial floodgates.” Last few times when I went to my PCP for a general exam they were a little anxious about me getting a Bone Density Scan! Those steroids! Good and bad all at the same time!

CatsandCars profile image
CatsandCars in reply tostepsforNeeC

Sorry, I'm good at that! 🤦‍♀️

I didn't know about the risk of osteoporosis from steroids until I joined the forum, so it was unwelcome information for me as well, stepsforNeeC. In fact, I am getting my first scan on Monday, at my request. I'm 58, so that wasn't on my doctor's radar yet. I'm not really looking forward to getting the results, but I'm telling myself that knowledge is power!

carolek572 profile image
carolek572CommunityAmbassador

In situations like this, it matters to have a great relationship with your medical professional. I trust my neurologist to make the best decision for me and I ask her for her advice always. I know that there is something called health insurance that we need to include in our decisions but my hope is that we can make the best decision for me first and foremost. I hope that this makes sense, stepsforNeeC . Keep Smiling, my friend :-D

stepsforNeeC profile image
stepsforNeeC in reply tocarolek572

Always +🙏❤️

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