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Steroid Withdrawal from Flonase – Prednisone Warrior David

Steroid Withdrawal from Flonase – Prednisone Warrior David

This article is part of a series of stories of Prednisone Warriors sharing prednisone side effects story. David explains his miserable journey trying to find a proper diagnosis and treatment and instead suffering steroid withdrawal from Flonase.

He explains what it feels like to suddenly stop taking Flonase (fluticasone), methylprednisolone, and prednisone. Find out why he wishes others knew not to stop them, and always taper off! Check out a summary of his prednisone withdrawal symptoms at the end.

Steroid Withdrawal from Flonase: I didn’t know the dangers!

By David

In November 2020, the temperature goes down in the Northeast where I live, and my postnasal drip (PND) increases. It’s so much PND, have a hard time sleeping at night. Consult with my doctor via telehealth and the doctor recommends Flonase. I had no idea that Flonase was a corticosteroid. So I stopped it abruptly. I subsequently found out that some people are susceptible to having their HPA access messed with if you’re not properly weaned off Flonase.

I took it from mid-December to early January. It was not working. I developed extremely intense pain behind my left ear. Sinus infection behind your left ear; that doesn’t match!

I stopped taking it in early January, I immediately get sick. Very, very sick. I lose weight, I get slammed, lose 10-15 pounds right off the bat. I get weak; weaker and weaker. The doctor again tells me to do Flonase.

Corticosteroid / Steroid Withdrawal Syndrome from Flonase

I expect I went through initial corticosteroid withdrawal the first time. He never at any point did he warn me. I didn’t know the dangers of corticosteroids.

Now I believe the pain was a Eustachian tube blockage. I give up on PCP, go to ENT, who says it’s possible to have a sinus infection.

I get heart palpitations in early February and feel like I’m having a heart attack. Doctor says, “Your heart is fine. You’re having acute sinusitis. Your sinuses are a bit congested.” I did not realize that Flonase can alter your heart rate.

A few days later I was having weird neurological sensations, and neurologist orders MRI. It shows white matter consistent with diabetes and hypertension.

I eventually go to an ENT who says it’s acute sinusitis. He puts me on doxycycline and methylprednisolone 4 mg 6 pack, 6, 5, 4, 3, 2, 1.” The first 6 seemed to go fine. The doxycycline is very, very strong. My previous doctor also put me on an antibiotic, which ruined my stomach. I took 30-60 days of antibiotics.

“It seems like the methyl is helping clear up the swelling.” I had swelling inside my head as a result. “Let’s extend the methylprednisolone,” and he prescribed it again.

A few days later, I get these huge trembling attacks. My heart palpitations get really, really bad.

Other Drugs Taken by David

The doctor adds Sudafed, making it worse. The cocktail of the doxy, methylprednisolone, Sudafed was too much for me.

I cannot deal with it at day 4, the heart racing, the trembling, the anxiety. I cannot deal with this anymore! As bad as they were, they got really, really bad.

Prednisone Withdrawal Syndrome?

I didn’t realize what was going on, until I researched it and found out about Prednisone Withdrawal Syndrome. I cut off the methyl on day 3 of the second 6-day pack.

Doctor said, “At this point there’s nothing we can do. Time is on your side.”

I’m feeling just miserable, like I’ve been hit by a bus. At this point, I don’t trust my ENT. My PCP didn’t warn me; my ENT didn’t warn me.

I cut off the methyl March 5th. For the next two weeks, I’m having all kinds of anxiety attacks. I’m the kind of person who regularly worked out.

Prednisone Taper

I found out my old PCP was back in my network and he put me on straight prednisone, a 6 day taper. I’m getting blood test after blood test, and everything is normal! The heart, normal! Despite the elevated rate. Tries to taper me correctly. There’s not much else he can do.

I’m doing research for 2-4 weeks. The last dose was on March 26th. I start feeling my heart start jumping out of my chest. I’ve still lost a lot of weight. I cannot gain weight no matter how hard I try. The insomnia!

I get full body constant muscle and joint pain.

I went to niece’s wedding on April 17th and I was in full pain, trying to smile my way through the pain.

By April 25th, my heart is beating out of my chest. I start getting manic. I asked my brother-in-law to take me to the ER. My blood pressure (BP) was 156/94, pulse 84. They don’t react as if anything is wrong.

My wife, who’s a nurse, says, “it’s all in your head.”

ER doc was the only one who was really kind about it, put his hand on mine, “it will get better, you just have to give it time.”

I did see an endocrinologist a week after the last dose of prednisone. He says, “Well I can put you back on prednisone.”

“That’s a non-starter for me. I will go crazy!”

Guess I’m one who has a high susceptibility to those prednisone side effects. I have adverse reactions.

My mom, my co-worker, they all have no problem with prednisone.

Side Effects After 100 Days On and Off Corticosteroids

At this point, I calculate that I was on and off of corticosteroids for about 100 days. It is now day 53 since my last dose of prednisone. It’s getting better, my joints will be numb, my muscles will be numb. It’s a different set of issues now.

I’ll get headaches, I’ll get light-headed. One day it will be my left eye with blurry vision, then it will be my right eye. My muscles have no energy. I’m down 15 pounds now. I’m achy almost all the time.

Sometimes I feel like I wonder if I have a neuromuscular disease.

I consulted with my PCP. He said, “Maybe you should see a rheumatologist.”

I’m telling you—it’s the corticosteroids!

The doctors get very defensive when I bring it up because they were involved.

I was able to get on a treadmill for 30 minutes twice last week!

Now I’ve developed numbness in my toes which seems to mimic neuropathy, but it comes and goes.

It feels like a car where it needs a tune-up. Things are firing at different times, at different levels.

To me, it all revolves around the corticosteroids. From the Flonase to the methyl to the prednisone.

I’m going to try to tough it out and hope my body recalibrates.

The insomnia is starting to get better. There was a point at which I would not sleep at night but my eyes were not bloodshot!

If I go back in time, I unknowingly stopped steroids three times, but didn’t know any better. Short of this thing actually killing me, it’s as bad a corticosteroid withdrawal as you can come across. Still very fidgety.

Is this a result of Anxiety? or by the corticosteroid drugs?

“You’re dealing with anxiety, you gotta get a grip.”

This is a drug-induced anxiety.

I was an FBI agent for 35 years, I’ve dealt with a lot of stress!

The heart palpitations have started to wear off.

I went out for a jog today, despite the energy in my limbs being sapped. It feels like someone put a syringe into my muscles and just drained them of the energy.

How long? I’ve seen theories that it’s as long as you were on it.

If I had to do it over again, I wouldn’t have taken Flonase, methyl, or prednisone.

The pandemic restricted my ability to go see the doctor.

I believe that I should share my story with you.

I worry about whether I’m going to survive this thing. We’re on a family vacation. It seems like my body is disconnected from my being. I’m trying to avoid the constant desire to just be in bed and just sleep it off. Then you become totally useless. So I’m toughing it out; I’m not sharing my pain. Literally, I’m in pain constantly. Not as much as I was on April 17th. It was full-body, constant, outrageous joint and muscle pain. But the limbs and the muscles are weak. I’m just not the same person.

Lessons learned for everybody:

“Flonase is not simple—I don’t think people pay enough attention to the dangers of that!”

Maybe my PCP figured it was no big deal because for most people it is no big deal. For me, it was a BIG DEAL.

Some people do fine, come off withdrawal quickly. I haven’t ruled out the possibility that’s it’s some neuromuscular sort of thing. I’m an evidence-based person, and everything points to the abrupt stoppage of each of these drugs.

I did not know that stuff would happen! I did not know!

I’ve never been a person to take much medication.

People need to know the dangers, so that people don’t have to go through what I’m going through.

I’ve been in contact with a drug addiction professional and he’s helped talk me through the emotional side of it.

My friend went through Prednisone Withdrawal Syndrome 30 years ago, on it for 30 days, tapered for 30 days, then for an additional 60 days. He said, “I just didn’t feel right, and thought I was having a heart attack.” Cardiologist said, “It’s the prednisone!”

It wasn’t a light switch. He didn’t just suddenly feel better. It took more than 60 days to feel better.

At this point I don’t trust the doctors.

I hope and pray the numbness in my toes goes away. It seems like there is a neurological component.

There is a purpose: so others don’t go through what I’m going through.

I’m hoping that by day 100 it will be better.

The endocrinologist did the 8:00 AM blood test to check for cortisol. My cortisol level at 8:00 AM was above normal at 24.5. The ACTH was normal.

It seems like the prednisone left an imprint on the receptors. The receptors must be thinking, “There’s gotta be more commin’!”

Later Steroid Withdrawal Symptoms

Now it’s numbness in the muscles.

The appetite has picked up, but I don’t gain weight. Everybody says, “you lost weight.” But I’m not proud of this weight loss.

The anxiety is pretty intense.

Oh, nausea! Mostly in the mornings. It’s weird because it’s not super specific. Different symptoms every day.

This whole thing has really messed me up big time.

Yet I can think and articulate pretty rationally except when I went to the ER the second time, I was in such a manic state, my wife couldn’t pick me up from the ER because of COVID. So I decided to walk home from the ER. After it was all done, I had walked 9 miles, and developed hematomas under toenails. I was in such a manic state, hyperventilating.

Short of it killing me, this is as bad as it can get. Except I can walk and talk to you about this.

It made me feel at least like I’m not imagining this. It’s very lonely. And it’s scary.

My name is DAVID. Please forewarn others!

This concludes David’s story. The remainder of this article is written by Dr. Megan.

David’s Steroid Withdrawal Symptoms

  • Weight loss
  • Heart palpitations
  • Anxiety
  • Severe muscle and joint pain
  • Nausea
  • Severe muscle weakness
  • Mania
  • Insomnia
  • Numbness
  • Headaches
  • Neurological sensations

What is Flonase?

According to Rxlist, Flonase is a medicine that is used to treat the symptoms of allergic rhinitis (sneezing, runny nose, and itchy or watery eyes) and nasal polyps. Flonase is the brand name of the generic steroid fluticasone. It’s used as a nasal spray. David was right, this medicine belongs to the class of medicines called corticosteroids, just like prednisone. The other medication he took, methylprednisolone, is also a corticosteroid.

Flonase is now available over-the-counter (OTC), without a prescription in the United States. When a drug goes OTC, the FDA does many studies to see if most people can use the medication safely without doctor supervision. Even with that high standard, there are a few people like David who suffer extreme side effects to Flonase (fluticasone).

Withdrawal Side Effects of Flonase
  • Palpitations
  • Neurological Sensations
  • Diabetes
  • Hypertension

David’s story illustrates that even inhaled, sprayed, or topical steroids can cause dramatic side effects. He had no idea that steroid withdrawal syndrome was a possibility, and suffered through three separate medications causing it!

Tapering is essential to prevent withdrawal.

Check out my article with a printable taper schedule for help tapering off prednisone.

Dr. Megan Milne, PharmD, BCACP

Dr. Megan Milne, PharmD, BCACP, is an award-winning clinical pharmacist board certified in the types of conditions people take prednisone for. Dr. Megan had to take prednisone herself for an autoimmune condition so understands what it feels like to suffer prednisone side effects and made it her mission to counteract them as the Prednisone Pharmacist.

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