My Love-Hate Relationship with Prednisone

My Love-Hate Relationship with Prednisone
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Twice in the past month, a charley horse in my right calf has ripped me from blissful sleep. Even though prednisone wasn’t to blame for the agonizing 4 a.m. wake-up calls, it’s the first thing I thought about while lying in bed, writhing in pain.

I’ve lost count of the number of times I’ve been put on prednisone to treat my sarcoidosis, but I’ll never forget its many horrible side effects, which is why I hate going on it and love being taken off it. Whenever possible, I seek alternatives because even short-term use of oral corticosteroids carries risks.

However, I do have ways to push through the worst of its side effects. 

It’s not you; it’s the prednisone.

I find an emotional anchor. When doctors prescribed me a high dose of prednisone after my sarcoidosis diagnosis, a friend who had been through steroid treatments gave me a warning. He told me I would do some crazy things, and I wouldn’t realize just how crazy I act except in hindsight once off the prednisone. He was right. Prednisone takes me on a roller coaster of emotional extremes. That’s why I always make sure I have someone I can count on whenever I need them to talk me off of the ledges of my crazy. 

Drink, eat, repeat.

Prednisone sends my appetite into overdrive. It also depletes potassium, which causes unforgettable, nightmare cramping in my hands, legs, and feet, and causes fluid retention. I’ve largely escaped prednisone-associated weight gain and the dreaded “moon face” by drinking more water, consuming less sodium, and eating protein-rich foods (which make me feel full longer). I also eat plenty of vegetables and fruits — especially those rich in potassium, like bananas and sweet potatoes — to help combat muscle cramps. 

What is sleep?

You’d think that battling muscle cramps, mood swings, and a relentless appetite would exhaust a person by the end of the day. Nope. Insomnia, which becomes more likely with dosage increases, was another surprise side effect of prednisone. I was able to reclaim sleep by taking my fully prescribed dose before 9 a.m., which is the optimal time, and taking Benadryl before bed, as recommended by my physician. 

I wage war on germs.

Prednisone suppresses the immune system, so I wash my hands frequently, which is the best defense against germs. I also steer clear of anyone who is sick and avoid crowded public places — especially confined areas such as trains, buses, and planes — when possible. 

Side effects make life on prednisone miserable, but I’ll keep pushing through courses as needed, as long as the benefits outweigh the risks and harm.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.

Athena, a former journalist and Pennsylvania native, was diagnosed with sarcoidosis in 2002. She’s admittedly addicted to books, Marvel, and football. She tackles life with humor, passion and curiosity, and hopes to reach others through her writing.
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Athena, a former journalist and Pennsylvania native, was diagnosed with sarcoidosis in 2002. She’s admittedly addicted to books, Marvel, and football. She tackles life with humor, passion and curiosity, and hopes to reach others through her writing.
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23 comments

  1. Miguel Cima says:

    I an a doctor and when I prescribe prednisone that will be needed for weeks or months I order it to be used once or twice a week and I published abstracts showing that the usual side effects of daily administration can be avoided Sone patients may not respond in full but those that do can take it for long periods without significant side effects

    • Athena Merritt says:

      That’s really interesting. It’s the first time I’ve heard of this. I’ll be sure to discuss with my physicians whether it’s an effective means of treating sarcoidosis when prednisone is prescribed.

      Thank you for taking the time to comment. Thank you for all that you do as a doctor, now more than ever. Stay safe!

    • Tom says:

      I was put on prednisone for inflamation in my hands i have rheumatoid arthritis plus a medicine for ra which im not to use until i finish the prednisone. Im on my 2nd 2 times daily pills as 2 mornings in a row ive been awoken with charlie horses. I never have i can go years without having. Is Prednisone the problem?

  2. Chuck says:

    Athena, you are so right! You’ve described my experience with prednisone to the letter. I’m a distance runner and it was such a relief when the course of prednisone had shrunk the swollen lymph nodes in my lungs and allowed me to breath freely again. But then the side effects began to take a toll. The others are a challenge but my leg cramps are the worst. They are so bad I’m going to have to stop running until I’m off the drug again.

    • Athena Merritt says:

      Hi Chuck, hang in there! I hope your prednisone course is over soon. Be careful when tapering off. The schedule will seem really slow, but following it will help you avoid a lot of horrible symptoms. Take care and stay safe!

  3. Lauren Thomas says:

    I just started a short course of prednisone for an intractable migraine, and even on the first day I experienced leg pain like I didn’t realize was possible. Does it subside at all? What tricks do you have to keep it at bay?

    • Athena Merritt says:

      Hi, Lauren so sorry you are having a tough time. Usually with the short courses it did subside once my body adjusted. To combat the leg pain, I made sure to stay hydrated (64 oz of water daily) and ate more potassium-rich foods like bananas and sweet potatoes. Also, exercise (elliptical or walking on treadmill) helped me. Hang in there, I hope you are feeling better soon.

  4. Omega says:

    I’m on 50 g of prednisone every day. I eat bananas and sweet potatoes and drink non sugar electrolytes called Zero
    I soak in hot water and EPSON salts the cramps hang in 2-3 hours and eventually ease but don’t go away and come back daily
    But nothing seems to stop the awful hand cramps from coming back
    What can I do to stop them.

    • Athena Merritt says:

      My neurologist prescribed a potassium supplement last year when I was having a tough time getting rid of muscle cramps. Check with your physician to see if this is a good option for you. Also, I kept track of what foods/beverages I consumed prior to getting muscle cramps. I discovered whenever I drank coffee muscle cramps were sure to follow. Best of luck and let me know how you make out.

    • Josie says:

      hi Take daily recommended dose of magnesium, All cramps will stop in 3 days. Stay on the magnesium. Steroids deplete this from your body and this causes the cramps. I know, I’ve been through it all. Been on and off steroids for 40 years.. stopped cramps dead after loads of research and found simple answer is magnesium deficiency.

      • Mary says:

        Magnesium is definitely necessary, but not always the cure. I have always taken the maximum required magnesium and still have killer cramps in my hands and feet. Staying hydrated and watching my potassium levels help, but still battling cramps daily.

        • Athena Merritt says:

          Hi Mary, one thing that also helped me was keeping a diary of what I ate daily to determine when my cramps were better or worse. I found if I drink more than one cup of coffee, horrible, wake-me-from-sleep leg cramps were sure to follow that night. As difficult as it is at times, staying active helps too. I hope you get a break from your cramps soon. Hang in there! Best wishes.

  5. Denise says:

    Hi, thank you for this article!! I had a flair up of sciatica few days ago and currently I have two days left of a med pac started as 6, 5,4,3,2,1 of prednisone. Woke up with night sweats the first 2 days, insomnia for 3 nights but this morning between 4 and 6 am I jumped out of bed with leg cramps 8different times. I will double up on the potassium and my water today!! Thanks for the advice !!

    • Athena Merritt says:

      Oh, that’s terrible – 8 times!! I’m happy you found our site and I hope you get some relief and better sleep tonight. Hang in there!!

  6. Sydney Tracer says:

    This is my first time ever taking prednisone and I am in the worst pain of my life from these muscle cramps in my thighs, calves, and feet.

    • Athena Merritt says:

      Prednisone is terrible. Hopefully your body will adjust in time and the cramps won’t be so bad. Be sure to let your physician know what you are experiencing to see if anything can be done to help. Hope you feel better soon.

  7. Maggie says:

    Hi, this is my 3rd wk on prednisolone. I’m taking only 15mg. I was diagnosed for EGPA or Churg Strauss Syndrome. It wasva low dosage which I thought I should be prescribed a much higher dosage. Even in such a low dosage I am already getting fat. I am always hungry but I tried to not eat too much. My face is already horribly getting round. I am not feeling happy. Today all of a sudden I had toes cramping on both feet. It keeps coming back many times and each time it last a long time like many minutes. Only 15mg and I am already in such a situation. I feel depressed. I have no confident to go out (tomorrow onwards) because I am afraid the cramping will happen. I think it is the prednisolone.

    • Athena Merritt says:

      Steroids can have a lot of dreadful side effects. Sometimes my body will adjust given time, which I hope is the case for you as well. Please let your physician know ASAP about your symptoms, especially the depression because steroids can impact mood. Remember medications may alter our appearance but not our beauty. You are a beautiful warrior. I know because you are here sharing your journey and searching for answers. Take it day by day. You are stronger than you think. Best wishes.

  8. Trevor says:

    I’m on a decreasing dose of prednisone, started at 40mg and decreasing by 5mg per week until finished!
    I have the insomnia, leg and feet cramps. The main side affect for me though is my brain is going at 100 miles an hour 24/7. I have to mentally counteract this constantly. It’s affecting my relationship with my family. They think I’m going completely crazy!! I know I’m absolutely not.
    Keep in there people, you are not alone.
    Thank you guys for this website/blog.

    • Athena Merritt says:

      Yes, so true! Prednisone is a wild ride at 40 mg. Hang in there! Thank you so much for providing insight and encouragement to others.

  9. Tori says:

    Hi,

    I too suffered from leg cramps. Magnesium did help but, I will take the potassium advice and get more and drink more water. My Dad told me drinking pop gave him cramps. I don’t drink much but, had a glass and sent cramps into orbit that evening. I felt so much relief while on prednisone. I had energy, wasn’t stiff and my body was not aching. I realize now more than ever I need to get to the bottom of symptoms. I was on for severe reaction to poison ivy. I worked in healthcare. Pills are not the only answer. Helping yourself stay fit body and soul, taking meds accurately and doing some of your own research and advocating for yourself is helpful. Thank you for this article:)

    • Athena Merritt says:

      Hi Tori, that’s great advice! Thank you for sharing! And I’ll be sure to add pop to the list of things to avoid:)

  10. Kathryn says:

    I just started a 60mg prednisone taper today, this is the second round in 4 months for suspected progressive autoimmune inner ear disease. So far no real side effects other than my knees are aching terribly! I did not have knee pain before so I’m a bit concerned. Anyone have experience with new joint pain after starting oral steroids?

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