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Coping with prednisone side effects?

more questions for you all: any tips or suggestions for dealing with prednisone side effects? Usually I’ve done short bursts of 5-7 days but am now muddling my way through about a month of prednisone, ugh! The 40mg is still making me feel queasy so the “eat everything” syndrome hasn’t fully hit. My kidneys have adjusted so I’m not running to the bathroom every hour. Right now the thing that’s really annoying is the sleep disturbance. I feel restless and tired but the brain says no! Have you guys ever tried a sleep aide at night to help like melatonin or maybe something stronger from your doc? One article mentioned taking prednisone at night because some patients can get to sleep before the effects hit them? Thanks!

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  • Shea

    About 2 years into taking prednisone I started having upper back tension a lot, so my doctor prescribed me Tizanidine– which is a very mild muscle relaxer– to take at night. It really helps me get to sleep. I also take benadryl at night– which makes a huge difference with my morning allergies/stuffy nose/itchy eyes too. 

    But when very high on prednisone– I would often times be up late doing art projects or cleaning– I learned its always best to using the time im on  the high dose energy to clean (or whatever daily chore requires the most energy– cooking, shopping, etc) because once you taper low you are not going to be able to for a while. I treat tapers like planned flus.

  • LK
    Shea posted:

    About 2 years into taking prednisone I started having upper back tension a lot, so my doctor prescribed me Tizanidine– which is a very mild muscle relaxer– to take at night. It really helps me get to sleep. I also take benadryl at night– which makes a huge difference with my morning allergies/stuffy nose/itchy eyes too. .

    Now that you mention it Shea, my PCP did suggest taking Benadryl at night if I couldn't sleep on pred.  Never did because I hate taking pills.  Kind of ironic isn't it!    Someone who hates taking pills now takes several every day!  

  • Pljohns

    I don't usually have insomnia until I hit the lower doses-at 60-80mg, I sleep pretty well unless I'm having to set alarms to get up at 2AM for a neb.  Now, once I hit bout 20 and definitely 10, the eat everything in sight and can't sleep kick in big time.  My big problem is the pred hot flashes!  I swear, I beat Dh to death with the covers every night when they kick in

  • Melissa G

    Prednisone kills my stomach and keeps me up all night. 'roid rage is real! I try to tell dh that I am feeling out of sorts being on it, but he just doesn't understand. 

  • Emelina

    Thanks for the tips all! I’ll give the Benadryl a shot tonight and try to channel the energy. I tried to get myself to do my taxes at 3 am this morning … yea, nope, still undone. Taxes stink. Thanks too for giving me the heads up on what to expect at the lower end of the taper (ugh, ugh … that’s still about 14 days away). He did tell me to let him know if things get rough at 5-10mg. Such a fickle little medicine. Game changing but a royal pain in the butt at times. Lol, regarding pred hot flashes … it looks like there had been a war in the bed when I wake up in the morning. Hot, cold, hot, cold. Poor hubby gave up and went to the couch for a few days! 

  • Melissa G

    Hot flashes are definitely no fun! I have hot flashes for a different reason. I lower the heat in our house and have the ceiling fan on in our bedroom. Everyone complains that the house is cold, I tell them to bundle up! 

  • Shea

    I really wish I could be off the pills and inhalers and all of it (without dying or being completely miserable). I really do plan on it one day… somehow getting my body back into balance. For now, I am using the pills to do that, and my plan involves weaning off of them and adding healthy balancing things into my life at the same time. I do believe there is a holistic balance that can be achieved….. I just haven't found it yet but I really do feel like I am making progress over time. My plan involves treating things from all ends and I think once I find that cycle that is balanced and natural and pill-free, I will just jump start it and keep it well-oiled and well-gassed and strengthen it and solidify it and never slip into disharmony again. I am rebuilding myself and my life like a caterpillar in its cocoon that turns into a liquid gel of a thing, and reforms itself and pushes its way out building its muscles and colors and comes out something beautiful. 

  • Deborah Bartlett

    Being that I also have COPD, a few times per year, I will need the Pred…of course during an exacerbation. If I do not use the Pred, I will end up in the hospital on IVs. No thank you. 

    I have tons of excess energy and strength during the first part of the taper. I always get extra things done at that time. As the taper winds down, things slow up. Takes me longer to get things done. 

    I do not like using Prednisone. I have no choice. I deal with it on a day to day basis!

  • Emelina

    Love the caterpillar/butterfly analogy and rebuilding oneself and getting everything back into harmony. I definitely hear you Deborah about the need for prednisone to stay out of the hospital with copd. As much as the side effects stink, it’s still a life changing drug. 

     

    How do you all explain the irritability and emotional rollercoaster associated with pred to your DH’s? I don’t think my dh gets it and takes it personally when I have to go hide to keep from eating people’s faces or are more sensitive to stuff that would normally be tolerated. Is it bad that I’m sometimes think ugh, if he took just one day of this stuff he’d get it and not expect me to be bright eyed, bushy tailed and the normal me not on this powerful mood/mind/body altering treatment. I’m not sure who needs the bubble wrap to survive this … me or the family? 

  • Shea

    Just have them all watch the Hulk movies… Literally is exactly what it is like and they need to know not to bother you. Hes a lovable superhero– the strongest and a great protector.. But its a lil out of control. This is what I try to do:

     

    Its tough after the outburst on you too. But I do think our body needs extra protection during the healing process, so even the outbursts can be therapeutic in quickly getting some issues resolved– just have a clear path to your room and pillows to thriw. When I was 13 on it I threw a banana at my older brother– he was sntagonizing me– hes lucky my aim gets bad when Im mad– he eas not nice to me in that time period at all– but when I was on ored he couldn't get away with it. When I was older on it, I broke 2 doors from slamming them at my old place. Also, as an adult, I yelled at my parents (they deserved it too .. and it did help resolve a long-standing issue). It's tough though, no doubt. 

  • LK

    Emelina,

    "How do you all explain the irritability and emotional rollercoaster associated with pred to your DH’s? I don’t think my dh gets it and takes it personally when I have to go hide to keep from eating people’s faces or are more sensitive to stuff that would normally be tolerated. Is it bad that I’m sometimes think ugh, if he took just one day of this stuff he’d get it and not expect me to be bright eyed, bushy tailed and the normal me not on this powerful mood/mind/body altering treatment. I’m not sure who needs the bubble wrap to survive this … me or the family? "  

    I apologize A LOT and often!  Forgiveness has to be a daily and many times even an hourly purposeful action.  I totally agree that if they had to take what we are on they would understand.  I would go for bubble wrap on all persons!    

    Well, let's just say that it has taken my DH a LONG time to even slightly understand how I am on pred.  I think the biggest breakthrough was when he talked with his BIL.  My DH's sister, BIL's wife, passed away some 5 years ago from cancer.  She had done chemo and the whole bit for several years at least.  BIL and DH had a long talk last fall and there was one thing DH told me from the conversation that really made an impression on my DH.  BIL was relating how a friend of his at work has a wife who is battling cancer.  BIL said he told this friend to tell his wife that when she gets so mad, either from the meds or from dealing with the illness or both, that she can call BIL and yell at him so she doesn't yell at her DH.  BIL is a good man and I am sure he meant every word of it.  He knows from personal experience how a chronic disease affects the whole family.

    Long story to say that since then DH has been MUCH more understanding and trying hard to see how the pred, other meds and asthma in general are affecting me. So maybe DHs, or DWs (Dear Wives) as the case may be, should also have a support group where they can relate to others who have to live with us!      

    I think it may be the same way only those of us who live with asthma and other chronic medical conditions can truly understand each other.  Our spouses and other family members also need to have others who are in the same boat and have been through what our spouses, etc. have survived.  

    We can try to explain to them until we are blue in the face (no pun intended)     but, at least as far as my DH was concerned, it just didn't click.

    Hope this makes at least some sense!

  • Emelina

    Haha! Melissa, I have so done that before. Turned the thermostat down and told the boys wear a sweater and socks! 

    Thank you Shea and Lisa. It’s a snowy weekend so we’ll have to all settle down and watch the hulk. I’ve got a nice pile of pillows and even a few 🍌 too! Thanks for talking me down off a ledge. I was so happy to get out of the house, have a good doctor’s visit and actually have the energy to shop and cook dinner. Then hubby and I squabbled about something stupid at the table and next thing I’m in bed, starving with pred tummy growls, buried under covers, swimming in tears. Your posts and thoughts made me smile and laugh and come out from my hobbit hole, shake it off and get back to the usual routine. Still waiting for DH to come out of the kids’ room to apologize for being a 💩.

    i love the idea of a family support group. It has to be tough on them too. Probably more so for the kids. Where’s mom? The hospital. I think my oldest was excited when he heard I was going to be off for 2 weeks of Fmla. But then I was hibernating for a week on all of the antibiotics and cough meds. Even the beginning of this week is blurry/hazy from the crazy sleep. Oh well, can’t dwell in the past. Hopefully this weekend is better. 

    Thanks!

  • LK

    Emelina,  Sending you many, many    and    !!  Those silly tiffs with DHs can just ruin us when we are on pred.  Had one of those already this morning, too!  Glad you are smiling again!    Can't tell you the number of times the wonderful folks on these forums have done the same for me.  Hope you are better today!!

  • Emelina

    Thank you Lisa for the hugs and support. Feeling better today. Made up with dh this morning. This is an interesting journey, and I’m so grateful for the support of people like you who have been there. One day at a time! 

  • Emelina

    I found one other benefit of methylpred & prednisone … it does wonders for eczema! I might be moody, bloated, teary, irritable and hungry, but I’ll be able to breathe AND have the best skin on the block. It’s like what my aunt says, if life gives you lemons, smile and turn em into vodka shots (or lemonade!)

    thanks for the Benadryl and sleep suggestions! Got a decent night sleep and made it out with the family for dinner. Slowly but surely the asthma beast is retreating into his lair. 

  • Deborah Bartlett

    Oh…DH? Ah…..poo! 💩 My DH slept half the day yesterday. He will more than likely sleep all day today. Never pays an ounce of attention to me. Oh well…he will be sorry that he never takes care of himself. I'm used to being alone all the time! Even when he is around, I'm alone. Never let any DH bother you. Not worth it! We all find our own happiness! It is a dark and rainy day here. I am keeping busy doing little chores. Hope you all enjoy your Sunday! I won't let anything rain on my parade!! ☔😀

  • Emelina

    Thank you for your thoughts Deborah, good advice. We have to make our own happiness rather than looking for others to make it for us. Dark and rainy? I kinda like those days: good for curling up in comfy clothes, soft slippers and sipping warm spiced cider! It is bright and sunny here, but still below freezing. Cmon snow melt, melt, melt! Hope you have a happy Sunday. 

  • Deborah Bartlett

    Gee, thanks Emelina! I love slippers. I always wear them around the house! So comfy and cozy! Hope you're having a really nice day! 😀

     

  • Shea

    Yes, prednisone is great for any inflammation– my disease, Churg-Strauss Syndrome–the allergic inflammation gets not only in my lungs causing asthma, but also blood vessels, intestines, heart, skin, pretty much everywhere!– so as I lower I like to make sure nothing is getting too inflamed again (mine the cause is allergic inflammation) and I try to settle my system by avoidance of allergens in my home (dust/dander/mold by keeping things clean with as green/sensitive cleaners as I can find and encasements and HEPA), and outings: things like trying to stay away from moldy buildings, any place where dogs or cats regularly go, avoiding places with high VOCs/chemical-y smells, and planning being outdoors during low pollen times. That is me trying to play both sides and come out the middle. 

  • Emelina

    Wow Shea, thanks for sharing insights into churg Strauss. I’ve only ever met one other person with it. It sounds like you are doing a masterful job of advocating for yourself and doing everything you can to keep the inflammation and triggers under control. The immune system is so tricky and amazing, but on the flip side so dangerous when it attacks itself rather than foreign material. My sincere hope is the field of immunology will continue to advance so there will be more steroid sparing drugs out there and a cure soon for diseases like yours that we are all just starting to understand.

  • Shea

    Yes, it is very rare disease. But, I dont really want to try anymore medications–especially new ones. I have had a few bad experiences with some of the biologics, so I just rather deal with the steroids than them. And I am making progress symptom-wise and in my bloodwork by avoidance of allergens, so I think that (and patience) is what will really help aid me in weaning lower over time. 

  • Shea

    Just a side note the meds I reacted badly to are not for asthma as far as I know, they are more for auto immune disease: cellcept and imuran and remicade. 

    I did try nucala for eosinophillic asthma part of the disease and that worked well but was too pricey. It did help get my eosinophils more into a normal range though (although I was also doing a lot of avoidance at the time too). 

    Today, I am achy and tired everywhere and Tommy is coughing up a storm– Ill prob catch what he has bc of prednisone's immune lowering side effect (and because he is sleeping in my bed and coughing in my face) .

  • Emelina

    Ugh Shea, I hope you and tommy feel better soon. Watch out for flu like symptoms + high fever, I’ve heard flu is still running around out there. The idea of any illness on prednisone freaks me out, but flu + prednisone, yuck! I can definitely understand wanting to stick with the prednisone if it’s working, especially with bad reactions to the new stuff. Great job with getting those nasty eosinophils down with allergen avoidance + Nucala. That is not an easy task! Feel better!

  • Pljohns

    Shea-hope you are feeling better today and hope Tommy isn't sick!  the flu+asthma is bad news.  So, thanks to you guys, here I sit with my mask on for day 3 of non stop wearing.  At the lend of the day, I feel like I have enough lint in my nose to stop up a dryer vent but it beats getting sick and there is A LOT of junk going around.  The predominant strain of flu this year is H1N1 and it has a respiratory component to it-I know, that's the strain I caught that left me with asthma to start with.  the flu vaccine seems to keep away the full blown flu but the respiratory component is getting a lot of people REALLY sick.

    As for the pred-I'm with Lisa-I apologize A TON-DH has learned that all I have to say is  "I'm on pred" and he knows I'm going to say things I don't mean, going to cry for no reason and heaven help if anything unexpected comes up.   

    DH actually bought me a shirt with this on it-at least he was smart and waited until I was OFF pred to give it to me

  • LK

    Smart DH there Lynn!!  Love the shirt!!    

    Shea,  I second the "Hope you and Tommy feel better soon" wishes!!  

  • Emelina

    Lynn, Ahahahaha! That shirt is awesome; lol dh was clever and smart with his timing! Yay! I’m so glad you’re still wearing your mask and stearing clear of the junk that’s going around. Lol, you made me chuckle with the lint dryer comment. Yikes, h1n1 is nasty. Spring needs to get here ASAP! 

  • Emelina

    Do you guys get heart burn/acid stomach from steroids? I’m 2 weeks into high dose steroids and hadn’t had any heart burn/indigestion until now. And the nausea is back. I guess it’s time to go hunt for tums or omeprazole. 

  • LK

    Em,  I get heartburn anyway so it is hard to tell if it is from the steroids or just "normal" for me.  Do you get it after spicy foods?  When you go to bed at night?  Sorry, I don't remember if you have answered those before.  Even on my ant-acid meds I can still get heartburn if I eat a very large meal, a spicy meal or a combination of the two.  Also, I try to not eat anything within 4 hours of going to bed.  For me, those things, along with pantoprazole in the morning and Pepcid AC in the evening have helped quite a bit.  

  • Emelina

    Hi lisa, I will very rarely get heartburn after spicy food, but not normally (I steer clear of the super acidic foods). I tried a phenergan and that killed the nausea but knocked me out. Tums helped with the tummy too. I guess one blessing of the stomach issues is it keeps the prednisone eat everything munchies from going into full swing. Thanks for your thoughts! 

    -em

  • K8sMom2002
    Emelina posted:

    Do you guys get heart burn/acid stomach from steroids? I’m 2 weeks into high dose steroids and hadn’t had any heart burn/indigestion until now. And the nausea is back. I guess it’s time to go hunt for tums or omeprazole. 

    Steroids can definitely cause tummy issues … but your heartburn isn't helped by following package directions as far as dose and suggested length of time, could you check in with your doc? 

    It's easy to lay a good many evils at the feet of steroids, but it's also a good idea to double check about anything that isn't responding to home care.

  • Pljohns

    Em-YES I get heartburn very easily with pred.  I take an OTC prilosec (I think that's what it is) and it takes care of it.

  • Shea

    I have heartburn with pred too. I used to get the rx ranitidine it the rx generic version of zantac but I was still needing tums alot so i got a stronger heartburn med now called protonix (pantoprazole) and thst helped a LOT. 

  • Emelina

    How long does it usually take you guys to feel back to baseline after a flare that requires oral steroids? This is only my 3rd time getting bad enough to need oral pred, but certainly the longest and most miserable Feeling kinda bummed today. I’ve been feeling better each day, so tried to see if I could back off on atrovent. Yea, nope, the cranky lungs didn’t like that. It’s hard being patient with recovery. I keep telling myself it has been 3 months of chest colds back to back, so it’ll probably take a few months to get back to normal. Cmon lungs, you have 1 job! Get with the program lungs or take a hike!

  • Melissa G

    I think it just depends. Did your dr give you a timeline on how to gradually step off of medication?

  • Emelina

    Hi Melissa, I have my prednisone taper schedule and the Atrovent every 6 hrs is a substitute for spiriva when feeling tight, so I guess the answer is not really? 

    Basically I’m getting the kitchen sink treatment (advair, singulair, spiriva, Allegra + slow pred taper) until I can get into pulm/allergy to figure out why this year has been so rough. Still waiting to hear back from pulm for my first visit.

    It has been about 9 years since my last skin tests. It’ll be interesting to see what comes back positive this time. I’m interested to see what my spirometry looks like now as well. 😬

  • LK
    Emelina posted:

    How long does it usually take you guys to feel back to baseline after a flare that requires oral steroids? 

    Em,  For me, the answer is "It depends!"    It depends on how bad my flare is, how long I have had it, etc.  As a general rule for me, it takes at least as long as the flare, but most of the time it takes months.  My lungs get so sensitive when I am in a flare they react to everything more than normal so I have lots and lots of smaller flares while trying to recover from the larger one.  As long as I am still SLOWLY recovering I am in good shape.  Yes, patience is in very short supply during those times!

    Hope you can see your doctor soon!

  • Emelina

    Thanks Lisa and melissa. Fingers crossed for an opening or cancellation. 

    Another pred question: do you guys get a lot of water retention in your feet and legs? I’m noticing socks are uncomfortable and I jumped on the scale this morning and cringed! The appetite/eat everything feeling is back now that I’m down to 20mg (had been on 60 for a bit) but golly! I’ll be extra careful with salt and watch my intake. Love the drug for what it does, but so many side effects!

  • Emelina

    I’ve never been much of a fluid drinker, maybe 1.2-1.5L in a day? I usually try to hydrate more aggressively when I’m working and running around like a chicken for 10+ hours. If the lungs behave, tomorrow will be another step down, so hopefully the side effects will start fading. After a little over 3 weeks of pred, I’m exhausted! 

  • Deborah Bartlett

    I am weak and fatigued. This is the adjustment my body has to make after the Pred had given me so much strength. My ribs get sore also due to the COPD. Hopefully, I won't feel short of breath. Doing better than some Pred tapers I've been through! 

  • Emelina

    Deborah, I definitely feel the same way and agree with ya on how it feels to slowly taper prednisone. I’m down to 10mg of pred and sure feeling it. Ouch to the rib pain! Do you think a heating pad or topical gel could help? I’ve just started getting painful Charlie horses In my chest muscles and feet. Not sure if it’s from my body missing prednisone, singulair or advair. 

    I go back to work for a week tomorrow (24 hr shifts); not sure how it’s gonna go feeling like a cross between a 🐌 and 🐢 but where there is a will, there is a way! 

  • Emelina

    Thanks Melissa! 🤞and for everything else there is coffee and power naps … and more ☕️ 

  • Shea

    Debbie, glad the taper is better than others, but oof on the fatigue– just listen to your body and try not to do too much during this adjustment time. Today is Wednesday–"hump day"– and its all about getting over that hump (and that prednisone hump) and then itll be an easy downhill peddle hopefully as your bodys internal mechanisms start producing cortisol and the muscles in the diaghram and elsewhere strengthen. 

    Today itll be a struggle being on 20mgs since I am a little sick so I am going to stay in and rest all day. 

  • Deborah Bartlett
    Emelina posted:

    Deborah, I definitely feel the same way and agree with ya on how it feels to slowly taper prednisone. I’m down to 10mg of pred and sure feeling it. Ouch to the rib pain! Do you think a heating pad or topical gel could help? I’ve just started getting painful Charlie horses In my chest muscles and feet. Not sure if it’s from my body missing prednisone, singulair or advair. 

    I go back to work for a week tomorrow (24 hr shifts); not sure how it’s gonna go feeling like a cross between a 🐌 and 🐢 but where there is a will, there is a way! 

    Best of luck going back to work Em!! We'll all be there with you in spirit! 

    With my COPD, there is another problem you can have with rib pain and muscle ache. Pulled muscle feeling in the chest and rib cage area can be common. I can use a ThermaCare non-medicated heat pad if needed. I cannot use medicated heat pads. 

    I get horrible legs and foot cramps. I have actually had my whole lower leg and foot twist all the way around so my foot is backwards. Weird! Other COPD patients have had this happen, as well. I can figure out what is happening due to asthma, and due to COPD. I am so used to the whole mess!!

  • Deborah Bartlett
    Emelina posted:

    Thanks Melissa! 🤞and for everything else there is coffee and power naps … and more ☕️ 

    ☕☕☕😁😁😁