This article is part of a series of stories of Prednisone Warriors sharing their experience with prednisone side effects. Linda shares this story as a cautionary tale to doctors and other prescribers of prednisone showing WHY to think twice about prescribing prednisone for simple ailments. 

Prednisone should only be taken if the benefits of treatment FAR outweigh the risks. (Benefits >>> Risks)

Read on to see how much the benefits failed to outweigh the risks for Linda.

STEROIDS, THE GOOD, THE BAD AND THE UGLY

By Linda Graupner-Braucht

In 2015, my husband became very ill.  It took a little time, but the doctors said he had multiple myeloma.  Both his sister and father had myeloma with a secondary disease called AL amyloidosis.   His father had both diseases in the early 1990’s and amazingly recovered with treatment, and it stayed in remission for years.  My husband’s sister became very ill with both diseases on her 50^th birthday, and fought both for three hard years.  She had a stem-cell transplant which destroyed her kidneys and made it so she could not eat much of anything for months.  She died 9 months later (6 months after her mother died of Parkinson’s Disease) in early December of 2014.  We barely got his sister’s estate settled when my husband became very ill.  Through many misdiagnoses, we eventually got the diagnosis of Myeloma. I knew he had the AL amyloidosis, also, but the doctors fought me.  We practically lived at the hospital ER that year.  When we would arrive, the ER waiting room would be filled with all sorts of people.  The most noticeable were those who lived on the streets who used the ER for their doctor’s office and we all sat together!  I really think they need an area for those who are doing chemo because it is not fair to subject them to so many germs from very sick people.  We were concerned about the various “bugs” that people had, but not literal bugs!  We had never considered the chance of getting literal bugs from anyone!

In June of 2016, we took a trip to Seattle to see a Myeloma specialist.  On the way home from the Seattle doctor, I noticed an extremely itchy rash on my legs.  It was really red and awful looking, so I got off the plane and went to the Urgent Care.   It was a staph infection (cellulitis) so I got an antibiotic.  Soon after, the rash really got severe and it had red spots which were all over my body except my head.  I called a dermatologist and got in to see him right away.  He said it looked like an allergy, so he gave me about 30 mg of prednisone.  The steroids immediately helped the severe itching which especially drove me nuts at night.  I found that by splitting the dose, I got relief from the itching throughout the day and evening.  At night, the itching was so severe that I would wake up and feel insane.   At times, I felt as if I were being bitten and as if something was crawling on me.  Yet I saw nothing but tiny red spots on my legs, torso, arms and boobs.

The prednisone also relieved all that terrible pain I got in my leg muscles from Lyrica and gabapentin.  Both drugs knotted up my muscles and made it hard for me to even walk. I absolutely loved the prednisone because I was finally out of pain, felt good and was happy.  Without it, the itching was insane.   In the early stages of taking prednisone, I was very happy because I was finally out of pain from what those two drugs did to me.  Lyrica left me with huge knots in my leg muscles and I could not even dream of going for a walk due to the muscle pain it had left me in.  But later, I understood the evils of long term use of steroids.

The dermatologist did not like the idea of continuing the steroids and he thought that antihistamines would help the itch.  Antihistamines did NOTHING for my “allergy” so I could NOT even think about stopping the prednisone. I could not sleep due to the terrible itching.  No one told me that my adrenal glands would shut down and that I would have to suffer incredibly by tapering off steroids over a two year period.  No one warned me that my adrenal glands may never wake up!  I never heard one single word about how difficult it could be to get off steroids.

Then, after being on steroids for 9 months, and being on just 10 mg of prednisone by that time, my husband “caught” my itchy rash.  Allergies are not contagious, so I knew we were both allergic to something or it was not an allergy.

The dermatologist sent me to his allergist.  She saw my rash every time I went in.  Each time, she had a different bunch of food items to test on me.  She would scratch the skin and then use a particular antigen on each spot.  If I got a welt, she would know I was allergic or sensitive to that food.  I did test positive for quite a few things, so I stopped eating those things and the itching stayed the same.  She tested many types of foods to find out what my sensitivities were.  Several foods caused a slight welt on my skin, but nothing so bad that I was going to be covered in severe itching.  After I had the itching for nine months, my husband’s butt and upper legs became covered in little red spots and some of the spots were a bit crusted, and some of them had a little red line leading from the welt.   We thought about our household water system, the soft water, the salt used in the soft water, etc.   My husband would cry every night in the middle of the night because he itched so bad.  I realized that my itching was always way worse at night, too.  I went to my computer and searched, “severe itching at night.”  Scabies came up on nearly every search.  I realized that I had probably caught the scabies in the hospital ER one of the hundreds of times we went to find out about his terrible illness.  I read some more and we had to go to an urgent care and request some insecticide for scabies.

Once we knew we had scabies, it was a matter of doing the treatment and figuring out how to deal with the clothing and bedding.  Soon after that, I began my first attempt at a prednisone taper.  I had no idea how to taper off prednisone after using it for well over 9 months by that time.  I went to my endocrinologist who told me to taper 1 mg per week from 10 mg to 5 mg.  Then from 5 mg, I was to taper 1 mg per month to 0 mg.  It sounded simple enough!  I figured I would be off the steroids in no time!  Well, it was not so simple.  The body pain became almost unbearable.  I got down to 1 mg and felt dizzy, nauseated, exhausted, and had terrible body pain.  I could hardly walk.  I called my doctor and he told me that I went too fast and that I should go back up to 10 mg, and do the taper more slowly.  I wish I had understood that each attempt is more difficult!  I would never have gone back up again.

So I increased my prednisone back up to 10 mg, but by the time I got to 7 mg, my leg muscles were cramping and I hurt so bad.  I would lay on the bed and cry.  I still had a lot of water in my legs, so I had some lymphatic massage done on my legs to help move the water out of them.  I had gained about 50 lbs. and much of it was water.  My legs were double their normal size.  I had several small scratches over time and each one would run like a faucet for weeks until I finally got cellulitis.  It was very frustrating.  One single scratch could make my leg weep into my shoes for months.  I would put ointment on it and hope that it would not get infected, but lymph drainage has a lot of nutrients for bacteria to thrive on, so infection happens quite easily.  Finally, my foot doctor showed me how to wrap my leg in an ACE bandage so the pressure would stop the weeping—usually overnight.  That was a huge help to me.  Finally I got down to 4 mg.

I was trying to stay active, so I continued to walk the dogs as much as I could.  One day, while reaching inside of the car to hook up the dog, he got excited and popped me in the jaw and my head crashed into the ceiling of my car which popped my neck.   I had a fusion on my C5/6 spine a few years before, so the whiplash flared up all the neck and arm pain again.  It was so bad that I increased my steroids up to 10 mg prednisone and added some dexamethasone from my husband’s prescriptions.  I got massage twice a week for about four months and then I was able to go back down to 4 mg again and began my taper again.

Not long after I got to 4 mg, I had bought some dried mangos which were grown and processed in Mexico.  One morning in Spring, I got up at 4:30 am and ate one of those mangos.  By 5 am, I was deathly ill and throwing up.  I felt so bad.  My heart rate went way up, and my blood pressure was tanking.  I called the ambulance and once I was in the hospital, where they diagnosed sepsis.  They never did find the offending organism, so I am now wondering if I really had an adrenal crisis.  The symptoms are almost identical.  Every person who is tapering steroids should know the symptoms of an adrenal crisis.  I fear that doctors do not want to educate their patients for fear of scaring them.  But if patients do not understand the seriousness of steroid withdrawal, they may end up in an adrenal crisis, or dead.

I left the hospital three days later and was given 60 mg prednisone again.  I felt so bloated and miserable.  My boobs were twice their normal size, my belly was enormous, and I was so uncomfortable that my ribs hurt.  I gradually dropped the dose back down to a tapering dose again, but then a few months later, I got up in the darkness of night and fell over our black dog.  The backs of my legs hurt so much that after a few months, I decided to seek medical care.  An MRI showed that I partially tore both of my hamstrings.  The tapering misery was quadrupled!

I started my fourth taper in November of 2017.  I dropped 1 mg per week as per the instructions on my first attempted taper.  When I got down to 7 mg, my legs hurt so bad.  It was actually painful to sit due to the partial tears in my hamstrings.  I really suffered from sitting very long and got really bad leg cramps.  According to my calculations, I should have been done with my steroid taper by March of 2018, but no one can predict when the adrenals will begin working, or IF the adrenals would begin working.  Sadly, tapers do not go according to our plans or a doctor’s plans.  Originally, I had a male doctor who seemed very rigid.  It seemed like I was going to have to follow his timeline and I was having a very hard time as it was.  I was a caregiver who really needed a caregiver!!  I knew I could not tolerate a fast taper and take care of my husband and household.  I really got cold feet about staying with that doctor, so I called and asked to change to a female doctor in the hope that she would be more forgiving.

The bottom line is that our body MUST make cortisol as we drop the steroid dose or we will collapse.  So we cannot force it to do what it cannot do.  All we can do is to drop the dose and wait.  If we get symptoms of low cortisol, we must increase the dose if it is severe, or ride it out if it is just uncomfortable.  When I got below 5 mg, it got very difficult.  The leg and hip pain became overwhelming.  I know of one man who was taken off steroids too quick and he told me that he crawled to the bathroom the next morning and for four months afterward.  His wife had to drive him to work because his legs hurt so bad that he could hardly walk.  Since that time, I have seen many with the same symptoms.  I remember that I would lay on my bed and cry because of the pain.  If I got remotely dehydrated, the pain increased drastically.  I had to taper in ¼ mg pieces at times and even that was pur torture.  By June of 2018, I had gotten as low as 2 mg, but could barely stand the full body pain.   The endocrinologist tested my cortisol and it was way too low.  So she eventually said that I was going to have to stay at 2.5 mg to be more comfortable and I spent most of my summer in misery.  By August, of 2018, my body adjusted to the 2.5 mg, and I felt good, but my cortisol was still too low to go off of it.

The new endocrinologist decided to switch me over to hydrocortisone.  So we went from 2.5 mg prednisone to 12.5 mg of hydrocortisone.  I decided to very gradually change each 0.5 mg of prednisone to 2.5 mg hydrocortisone.  It took about 3 months to complete the transition.  I was taking 10 mg of hydrocortisone in the morning and 2.5 mg of hydrocortisone in the afternoon.  On January 1, 2019, I deleted the 2.5 mg, of hydrocortisone from my afternoon dose.  WOW.  What a shock that was!  My fingers hurt, my feet, my everything hurt bad for a few months.  It was just brutal and the exhaustion was terrible.  I had to take a nap EVERY single day.  Finally, by the time I got to August, I was over most of the pain and decided I would just drop the rest of it and see what happened.  First I stopped 5 mg and it wasn’t too bad.  So I stopped the other 5 mg.  I had a bit of fatigue, but not bad.  After about three weeks, I felt great.  All the withdrawal body pain was gone!  It was amazing.  I am now going to the gym, working out and walking on the treadmill without pain.  For two years, I could barely walk due to the leg and hip pain from the steroid withdrawal.  The only lingering issue I have is evening fatigue, screwed up sleep patterns and for a few months, drenching sweats in the night time for awhile.  I will say that getting off steroids was grueling and painful.  It was actually the hardest thing I have ever done, and not one doctor warned me about it.  I had NO idea.  I had no idea that it was life threatening.

SUMMARY:

I truly wish that doctors would take the time to explain that steroids are not drugs, but hormones that are vital for life.  Many people stop taking antibiotics, forget their thyroid, etc., and nothing happens, but those who become dependent on steroids must fully understand that forgetting a pill, or purposely stopping them can kill.  They need to understand how bad it is to become dependent and how the adrenal glands shut down after taking steroids for a few weeks.  It can take months of tapering to make the adrenals wake up and begin working again.  And sometimes the adrenals do not wake up.

I also want doctors to realize that tapering steroids does not make a person a little bit achy.  Try using the word crippled up.  Without pain medication, I could not have stood to get off of them.  It was exactly two years of leg cramps, cramped hip muscles, hobbling with painful Achilles tendons, trying to type with painful knuckles that felt like I had terrible arthritis.  Remember, I took steroids due to a misdiagnosis.  It was NOT because I had a disease.  I only got a communicable disease called scabies!

In my opinion, doctors should have a rough schedule for their patients, but patients need to do this tapering as they are able.  It took much longer than I would have ever dreamed, just due to the exhaustion and full body pain.  I lost my taste for meat.  I lost my appetite for months.  I couldn’t have worked.    Now I understand my stock broker’s story about steroid dose packs which he did back to back for a month or so.  His doctor took him off of them cold turkey.  The next day, he crawled to the toilet and his wife had to take him to work for months.  His body pain was so severe that he wondered what happened.  Then when he somewhat recovered, he tried to go running again and tore his Achilles tendon.  No one told him that steroids make tendons brittle.  A lot more communication must take place by doctors and patients when considering steroids long term.  And when my husband took steroids for his cancer, no one told us about steroid psychosis.  My husband got psychosis three times before we realized it was the steroids.  He became dangerous to me and himself in one instance.  No one warned us about mood issues and the drug/hormone.

Steroids, the good, the bad, and the ugly….

Steroids are good short term and they decrease inflammation so well!  They help reign in the destruction from auto-immune diseases, and allergic reactions, but the bad happens with long term treatment.  Patients have mood swings (sometimes outright psychosis), infections, skin breakdown, hair loss, Cushing’s Syndrome symptoms, diabetes, lymphedema, and bone damage.  The ugly is the fat face, the weeping lymphedema sores, the cellulitis, the loss of relationships from mood issues, and decreased quality of life due to osteoporosis and osteonecrosis.  Doctors need to explain the dangers of these drugs/hormones so patients can at least understand what is happening to them.

Do you have a Prednisone Warrior story you want to share?

Contact Dr. Megan and we can feature it!