My Love-Hate Relationship with Prednisone
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.
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Comments
Miguel Cima
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
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
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?
Chuck
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
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!
Eljah Boomsm
I'm sick for 4+ weeks now. I started to have the flu, got pneumonia from it which triggerd my asthma to the extreme. I got 30 MG for 5 days. Unfortunately it didn't work for me and I still have asthma attacks and I need to go to the doctor again because of how tired I am. The side effects don't help either because of it, I can't sleep, my hands, fingers, feet, even my cheeks and nose are aching. Because of lack of sleep I have chills. My appetite goes back and forth cuz of the returning asthma attack and fatigue, I start to not want to eat. My skin is white as snow, I have no color left on me except blue cuz bruises don't heal as good. I'm someone who's emotionally very stable usually but even I notice I'm more irritated than usual tho it can also be cuz I'm so tired off it. For me it unfortunately did more bad than good.
Lauren Thomas
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
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.
Omega
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
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
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
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
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.
Denise
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
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!!
Sydney Tracer
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
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.
Josie
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.
Maggie
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
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.
Trevor
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
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.
Tori
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
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:)
Kathryn
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?
Colin Dunn
Could be that you're weaning off Prednisone too quickly. I had similar experiences coming off Prednisone, this time in my hands which weren't affected before. General rule: decrease by no more than 10% dose. Maintain that level for one week then decrease 10% again, etc. Good luck!
Priscilla amobi
I noticed cramps and swelling of legs and bloated tummy the worst of it I started the 10mg daily of Prednisone on Sunday started Menstruating on Monday and had my menses for two days only and it stopped. Now when I stopped the Prednisone my menses started coming out in little drops. And I am still suffering from abdominal cramps, with muscle and body tremors. So stressed out l.
KARLA L STAMPS
I quit taking steroids because I would develop pain in my ankles (It felt like I had sprained them)....This happened every time I was prescribed them...it even happened once after a steroid injection and when they increased the strength of my Advair....this occurs along with the other lovely side effects of insomnia, weight gain, elevated blood sugar, etc. Does this happen to anyone else?
Laura
I'm literally sitting here crying because I'm on round 2 of steroids and was complaining that it felt like I sprained my ankle. And pharmacy says they've never heard of anyone getting leg pain. All these comments (especially the ankle pain) give me such relief that it's not in my head.
Currently using a tens unit on my leg pain and it's really giving much much-needed (temporary) relief.
William Griffiths
Athena,
I am glad that my Google search " my hands are curling up on prednisone" brought me to your article. Your article and all the comments are very helpful. Though diagnosed in 2002; and confirmed this summer, it is my first use of prednisone 80mg...now tappered to 70mg. I have managed the side effects by staying informed and Journaling the experience. Thanks again for being a resource.
June williams
I have just been diagnosed with Temporal Asteritis and put on a course of prednisone I STARTED WITH 8 TABLETS A DAY. 40 grams then 6 tablets a day then will go to 4 tabs a day Iam having terrible cramp in my feet and ankles lower legs also pain in my thigh will this get better as dose is lowered I will be on steroids for I believe long term what tabs do I need to help combat the cramps help
Jc
A tablespoon of mustard at bedtime helps.
Janet Durant
Do you mean English Mustard?? How can you take a tablespoon??
Mayda Patton
Hi, I too take prednisone when my asthma & allergies flare up. I’ve been on/off for almost 30 yrs. Back then I stupidly ignored my Dr’s warnings of future side effects. Now I’ll ask for anything instead of it. Unfortunately I didn’t take the warnings seriously & took them every time a new Dr prescribed. I really didn’t have cramping back then, maybe my busy raising 4 daughters?? A few years back is when I started getting them more & the blinding pain was so intense I thought I could die. The cramps usually happened in my legs & torso but other areas were not off limits. I almost went to ER when I started getting them in my jaw & around my heart. I try staying off them but once in awhile I’ll get bad asthma/allergy flare up. Thanks so much for sharing, I really thought it was my not taking the Rx seriously🤔
Wally Tank
I have a friend that is being treated for lung cancer as well as a malignant lump in his left breast. He started out with a brain aneurysm that initially put him in the hospital for nearly a month. This is when they found the lung cancer and lump in his breast, He is also dealing with Psoriasis now. He was put on a lower dose of prednisone, which now is causing bad cramping in his body. They want to increase the doses of Prednisone but are worried he may go blind.
For this they removed a temporal artery and are testing it to see if the increased dose will in fact cause him blindness.
His auto immune system is going crazy the way it is and I fear for his sanity. Your site has given me some answers and options to help him along, which I will relay to him and ask him to ask his doctor in more detail if my advice is good before following my suggestions.
Wally Tank
A suggestion of taking a Tablespoon of mustard just before bed was posted. Does this help and what kind of mustard ?
JoAnn Summers
My legs are killing me they hurt on the inside around enter knees. Dr said he was concerned but didn’t get me an appointment. Called my family dr. Set up Doppler for Monday taking meloxacam.15 mg. Anybody got any thing they know what relief for me. I could cry if it would help!
Maxi
Josie, I’m very glad magnesium helped you. However, we are all different and our individual experiences with diseases and treatments and their side effects vary greatly. I have been on magnesium supplements for years, morning and night, because of another condition I have. I also already eat a banana a day. When I am prescribed the oral prednisone at 40mg tapering off over many weeks, I experience the incredibly painful & debilitating knee, leg, calf and foot cramps. Like now! I am already on the highest dose magnesium yet I still get the cramps. I can’t stretch the muscles out as it’s far too painful. I’m woken up in tears as it’s hard even getting out of bed. What works for me is massage with an anti inflammatory cream I have beside my bed, drink some pickle juice, then a hot water bottle or heat pack on the muscles. The cramps ease within about 10-15 minutes. Hope these tips are helpful for others, but just remember they may not work for everyone!
Julie Gronmark
That is interesting. I was diagnosed with Neurosarcoidosis in Nov. of 2021. It presented originally as Transverse myelitis. I went numb from my chest down. I was unable to walk my last round in the hospital. I just barely got off of Prednisone two weeks ago. Eight months of steroids. Unfortunately for me, even tapering slightly to fast caused the numbness to start climbing. It was my stabilizer while my monthly infusions of Infliximab work. So taking it a few times a week wouldn't have worked for me.
Ken
Thank You Athena,
I'm going through the same thing right now. I normally have will power but the Prednisone is wining the war on hunger I just can't seem to spot eating. I'm going to switch to taking the Prednisone in the early AM to see if this help with sleep and possibly help me fight the hunger. Thank you for writing this article.
Ken
Deni
Hi,
My special needs kiddo took Prednisolone for 2 months and it wrecked havoc. It gave him hand tremors. Now that he is off of it the tremors stopped, but he is still having some sort of hand issues. He is constantly pressing them to get relief of whatever he feels. Drs are puzzled as to what the hand issue are and just don’t know how to help him. Anyone else deal with this? If so what helped?
Mike Callaham
You’re so right. I’ve been battling cardiac sarcoidosis since 2016. I’m on my second iteration of a high dose 6 month taper during that period now. The extreme cramps have returned along with insomnia. Keto keeps the pounds off.
The first high dose regiment in 2017 landed me in the hospital they were so extreme. We never knew the cause… this time my wife had me review my prescriptions and hospital visit compared to this time - and sure enough, 6 weeks in the cramps appeared
Carmen
Taking prednisone for 8 weeks already and landed at hospital with atrial fibrillation something I never had before, I am wondering if prednisone is the culprit since I had tremors and cramps on hands and feet too, any one experience the same with heart rate palpitations?