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Pred side effects

Ok ladies-since there are a bunch of us on this mess, I thought it might be a good topic for what side effects from this stuff you have and what's the worst-Let's hear it, the good, the bad and the UGLY-

For me-the nausea right now is awful, not to mention the night sweats, not sleeping and one I"m afraid to mention-anyone else have facial hair"fuzz" from it?  I feel like the bearded lady in "the greatest showman" 

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  • K8sMom2002

    Oh, my goodness, Lynn … on the side effects. Thanks for starting this topic!

    Stomach issues for me … I hate the awful rumbly in the tumbly whenever I've had to take pred. And the taste of that little pill is AWFUL. It just stays with me. 

    The tiredness and fatigue and sleep issues (not to mention the mood swings) don't usually come into play until I start a taper in earnest. But others have spoke of a different experience.

  • Kathy P

    My biggest issue is usually the insomnia. I'm on a fairly low dose right now, so that helps. But the first night I was falling asleep at 9:30, but then awake til 4:30 am and not functional the next day.

    The mood swings can be get pretty ugly too! 

  • Shea

    I always feel like smashing things. Even if I try to hide it on the inside. I just want to smash things.

    Me on prednisone:

  • LK

      to everyone who is on pred!  

    Looking back to when I was on it this last time, the main things for me were sleeplessness, emotional roller coaster – even minute by minute, very irritable, feeling famished all the time even after eating, hot flashes day and night, not being able to sit still for very long and even when I could sit still I absolutely had to keep my hands busy or I would literally break down and sob for no reason whatsoever.  Got lots of loom knitting and crochet projects done!

    Can't say I had any stomach upsets from pred.   As was said above, the pills leave a bad taste in your mouth.  

    Are there different brands/ kinds of pred and if there are, are some more prone to making stomachs upset?  Once I was on Prednisolone and another time Prednisone.  On the Mayo Clinic medicine listings they are listed separately and have different brand names so I was thinking that even though they are both corticosteroids they may have different ingredients?  

  • Pljohns

    Good point about the different brands-I guess I find more that the pred and the increased nebs kick my reflux up so that may be part of the nausea.  

    The one thing that I have found that cuts through the taste of the pred-CHOCOLATE!  I always keep plain old Hershey's kisses around when I'm on pred-and chocolate pudding

  • LK

    Of course, Chocolate!!     Lynn, is there anything you can take for the upset stomach?  I know the last thing you want to do is take more meds right now, but having that upset feeling will wear a body out as quick as anything so if there is something you can take??  

  • Pljohns

    I keep zofran and it helps nausea but not the "everything going straight through" problem.  I'm hesitant to take much for that because pred constipates me terribly.

  • Shea

    Oof I finally think that extra prednisone is through my system and I am Dr. Banner again. Much better. And the house is clean. 

    But yeah I still have the long-term side effects of the peach fuzz and chubby cheeks– I can handle that. I mostly hate the bouncing up and coming down stuff, as was this tiny reminder, and I hate coming off too fast and feeling fatigue and adrenal insufficiency stuff. Finding the balancing dose and slowly weaning when Im doing well has been the best thus far. Missing that morning dose yesterday, then takung extra, was no good! But I made it through, and Ill be good now.

  • Melissa G

    Shea, yes!!! That is exactly how I feel on prednisone! 

    Prednisone upsets my stomach, but then can also cause me to be extremely hungry, hence weight gain. Then the mood swings…the oh so not pretty mood swings. 

  • dory2005

    Since I'm on a high dose right now (60 mg) and had a steroid shot yesterday, I'm definitely feeling lots of lovelies right now.

    1) Cushingoid/moon face/weight gain/distribution: This is the one that makes me the most self-conscious, and the one that I obsess over the most. My face looks so different than it did three years ago when I started taking mega doses of steroids. It's a vanity issue I know, but it is the one that I know won't go away until I'm off pred. 

    2) Steroid-induced diabetes: This is the one that is the most serious I think. I've had it for 2+ years now, and it literally happened overnight when I was in the hospital. They were giving me mega doses of IV steroids and my glucose levels went from normal to the 200 level.  After I got out of the hospital, my blood sugar was still high because of the pred, so I had to start taking diabetic meds and started a diabetic regime/diet. 

    3) high BP/tachycardia: This is the one that freaks me out the most because when my heart rate is high, I feel it and I hate that feeling. It is a more serious one as well.

    4) I have heat rashes on my arms that look like really bad sunburns. When I get the pred hot flashes, it makes my arms burn, so it's like having a sunburn all the time. This has been pretty consistent over the last year, but over the last few weeks, it's been worse since I've been on 40 for about 3 weeks.

    5) Pred sweats: I get horrible sweats from the pred even in a cool area, and it's really embarrassing. I never used to sweat before becoming chronically dependent on pred.

    6) Insomnia/Fatigue/Extreme Tiredness: Yep. Haven't been able to sleep for more than about 5-6 hours the last few days and the fatigue is getting to me.

    7) Stomach Issues: Yep. Got that too.

    8) Mood Swings: Yep. That as well. 

    Like I said, I'm feeling all the lovelies today! 

     

     

  • Pljohns

     Melissa-so sorry you have the full range of everything.  I start my tapers on 60-80 mg and the shot too so I know what you mean.  My face looks HUGE-like I've gained a ton of weight but I haven't-I'm really self conscious about it too.  I know it will go away but not nearly as fast as it got there!

  • Emelina

    Oh boy, let’s see: insomnia, upset stomach/nausea (usually worse at 40mg), mood swings and irritability, puffy face, changes in fat distribution around my neck and tummy, appetite changes (can’t eat at 40mg to eat everything at less than 15mg), hot/cold flashes and prednisone sweats. As much as I hate the side effects, it’s the one medicine that makes a huge positive impact on my symptoms. Just wish they could make a cleaner version without so many side effects. 

  • Emelina

    Here ya go Lisa, my understanding (and I’m no pharmacist) is prednisone and prednisolone are slightly different forms of the drug (pred is a pro form that is activated to prednisolone in the body). Methylpred is slightly different as well in terms of potency and form (can be given iv). 

  • Shea

    I ditto all of those effects listed above. I used to weigh 120 lbs– that was my normal. After 7 years on pred I am hanging onto 199lbs with both hands– I am NOT OK being at 200lbs. I just have to find a way off. I try to love my puffy face I do– I call it my cushion. 

    I always remind myself Id be dead already without this meducation. And I am thankful for the years it has given me and the benefits on my asthma and breathing, as well as overall organ and blood vessel inflammation. But I need to find a way off and I really am trying to work from all angles to acheive that. 

  • dory2005

    Shea, I love your attitude! I need to have a better one about my face/body. I'm thankful that the pred keeps me breathing, so I will work on loving my face regardless! Thanks for the reminder! 

  • LK

    Also feeling completely scatterbrained.  I don't know how you ladies work while on pred.  I sure couldn't have!  I applaud you all!  

  • Pljohns

    The one benefit is the energy-geeze-I haven’t had this much energy in FOREVER and nothing hurts-BUT when you come down, boy do you crash

  • Emelina

    Yep. When I was on 60 I was the energizer bunny and thought my thoughts were clearer and more focused too … not sure if that was reality, lol 

  • Pljohns

    Em me too!  Most o the times at 60-80mg, I have tons of energy, just no lung capacity to do anything with it!

  • Shea

    Yeah I agree, I feel like Captain Marvel when I am up high on prednisone– a body functions so much better when all that inflammation is zapped away. On these lower doses I feel like a zombie just barely surviving. But I get used to it and I ration my energy. I have a dullness in my head feeling a lot. Except if I have a Starbucks– that helps bring me to life for a few hours. No other coffe works as well as Starbucks.

  • Shea

    I have been reading about long-term prednisone use and tapering because I have been stuck so long at this dose of around 20mg. I am interested in learning more about adrenal insufficiency and adrenal suppression and at what tapered dose it starts and how to monitor it. A few parts I found interesting in my studies, and Id thought Id share with others who have bern on long-term prednisone:

    Information for patients who take Steroid Hormones:Steroid hormones (more precisely corticosteroids) are life-sustaining hormonesmade naturally in the body by the adrenal glands. More of the natural hormone ismade in the body in the early hours of the morning, less in the afternoon, and verylittle in the late evening. The natural hormone is called cortisol, and probably thebest known man made corticosteroids are prednisone (Medrol) and dexamethasone(Decadron). The body normally makes about 30 mg of cortisol per day, which isapproximately equivalent to 0.75 mg of dexamethasone and 7.5 mg of prednisone(the man made hormones are much stronger).Doctors sometimes use steroids as a treatment for a variety of conditions such asrheumatoid arthritis and asthma. When used as a treatment, doses of steroids muchhigher than the body would usually make are often prescribed (20 – 100 mg ofprednisone per day, for instance). These doses of corticosteroids taken for weeks,months, and years do have significant well-known side effects. However, doses ofcorticosteroids that are similar to the amount usually made by the bodycannot and do not have side effects. Furthermore, even very large doses ofcorticosteroids taken for less than one month have no significant long-term sideeffects, as a rule.The body does on occassion make increased amounts of cortisol per day. Theamount of the hormone produced increases during stress such as an illness, aninjury, surgery, or even emotional stress. Without this increase, a person would notsurvive such challenges. Production of up to 300 mg of cortisol per day has beennoted in otherwise healthy patients undergoing major surgery. This is the reasoncortisol is sometimes referred to as a "stress hormone."A person can be deficient in cortisol for one of two reasons. Rarely the adrenalglands simply stop working, known as Addison's Disease, or the pituitary gland,which tells the adrenals what to do, is not working. A more common situation iswhen a person takes steroids as a treatment for a prolonged period of time, usuallytwo months or longer. In that case, the adrenal glands "forget" how to make cortisol.That is not a problem, as long as the person continues to take their steroidtreatment, but drugs such as prednisone and dexamethasone must not be stoppedabruptly.If the body is deficient in cortisol, a person becomes weak, tired, loses appetite, candevelop nausea and diarrhea, and often loses weight. This is serious, but thesituation is even more serious when a person who cannot make stress amounts ofcortisol is exposed to stress (illness, injury or surgery); in that setting, even deathcan result from cortisol insufficiency.

     

    From this information, I feel like I should be able to get to 7.5 mg prednisone (that makes the average daily amount of 30mg cortisol a normal person has when not under any stress)… So that'd be an achievable dose IF I had no illness, inflammation, physical or emotional stressor during that time. A person can make way more cortisol (from 30mg cortisol as normal/not stressed or ill, to what they measures as  300mg cortisol produced in otherwise healthy patient undergoing surgery). So I know when having surgeries now Id need more prednisone because my body isn't making its own cortisol adjustments. And even during illness I know many of us need to go up on prednisone.

    But to lower to 7.5mg prednisone would be great. But then my body will need to start making its own cortisol again. During that adjustment, the second paper recommends switching to hydrocortisone (costisol) pills which have less adrenal suppression affect on tge HPA axis– to help my body as it adjusts to making its own cortisol. I have never heard a doctor suggest that. I will ask my immunologist if it us donething we could try.

    So far I have been trying to just lower all my physical and emotional stressors, and reduce allergic inflammation by avoudance strategies, and monitor the churg-strauss syndrome asthma and vasculitis symptoms enough to be able to lower from 20mg prednisone. It is so hard to separate symptoms of the disease with side effects of the medications– both which are serious… But obviously will have different solutions– if it is the disease Id need more prednisone to reduce that inflammation, if it is the prednisone side effects then I need to come down on it. And it can change because coming down on the prednisobe can "unmask" the disease! So confusing! I have definitely had these symptons of adrenal suppression when forgetting to take my prednisone once recently:

    And I took my prednisone as soon as I realized the mistake. But I also get symptoms of prednisone withdrawl less severe when tapering and sometimes it results in full-blown flare and sometimes I make it across the "hump", so I just feel that my body with disease is not ready to be functioning at what a healthy body would be … YET… Because it needs prednisones anti-inflammatory and immune-suppressing effects that I need right now:

    Primary effects of glucocorticoids (GCs) []

       
    Anti-inflammatory: Inhibit inflammation by blocking the action of inflammatory mediators (transrepression), or by inducing anti-inflammatory mediators (transactivation)
    Immunosuppressive: Suppress delayed hypersensitivity reactions by directly affecting T-lymphocytes
    Anti-proliferative: Inhibition of DNA synthesis and epidermal cell turnover
    Vasoconstrictive: Inhibit the action of histamine and other vasoconstrictive mediators

    Anyways I thought this info was really interesting, and wanted to share in case it is helpful to others.

  • Deborah Bartlett

    The first time I take the high dose of a Pred burst, it feels like the whole inside front of my body is a burning volcano ..like I dumped crushed red pepper into my mouth and lit it on fire. And speaking of brands…I notice different pharmaceutical companies on the prescription labels. Does it make a difference? It could. 

    I notice, since I have been on Pred.since November, my cheeks are a bit chubby. I have gained about 10 pounds. I have hot flashes on and off all the time. I get out of bed in the morning soaking wet in a cold sweat. Yuk!! Plus, I have to deal with the folded lung feeling from my COPD. 

    When I near the end of a taper, my chest feels tight, like I have half-breaths. Then, when I see the doctor, if I am wheezing, I know I won't be getting off the Pred. 

    I try and keep busy to avoid the Pred taking my life over thing. Sometimes it seems as though it makes me feel out of focus. I don't like that at all. I want to control me, not my medications!!!!

    Unfortunately, Pred. is here to stay for me. If my doctors come up with a new plan, I hope it will be safe for me. I do not like Pred!!!! I know that I need it to breathe. Severe asthma and COPD are not things to play around with or ignore. I manage the best I can. 

  • LK

    Shea, That is interesting.  Thank you for posting it.  Always glad to learn!