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Very interested in reading what people have to say about prednisone. After being diagnosed 6 years ago with RA, my Rhum Doc requested I get several tests done to establish a baseline for my heart. Sounded a little strange at the time, but I was so thankful to finally get some help I didn’t ask any questions. The past two years I have been dealing with heart issues. The physicians assistant in my cardiologists office also has RA, so we have our own personal case study going on. What we have discovered is that each time I have a flare and go on a high dose of prednisone I end up having chest pain. The first time they did a heart cath and put in a stent.( Probably saved my life) The second time they did a heart cath. No blockage. Each time since, I take nitro pills until chest pain stops. This always happens after I have come off a high dose of prednizone. Is this a result of the high dosage or my bodys withdrawal from the drug? Any thoughts?
Wow. I just told my doc a couple of weeks ago that without pain killers it feels like I’m walking on sprained ankles. Right now it’s hard to type this as my thumbs feel like a sharp poker is stabbing them and my elbows hurt. After a year and a half of trying I think I’ve finally gotten through to my doc that something is very wrong. I got through because my fingers turned blue in front of him and he diagnosed me with Raynauds. This opened his eyes to the fact that more is going on. I will be seeing an internist and and an ophthalmologist. MAYBE now I’ll get somewhere. I hope. Sorry you’ve suffered so much. I wish it weren’t so.
My doctor has always prescribed prednisone in “burst” dosages, which start high (usually 60 mg) for a few days and then slowly taper to 5 mg maintenance dose. Like many people, pred makes me manic, so I typically get off of it as soon as possible. This type of short term use has been pretty effective when I have severe RD flares. I’ve never heard of using pred in the manner you describe!
When I was first diagnosed with RD three years ago, Prednisone was the first medication my Rheumy threw at me. After having woken from a regular nights sleep and feeling like I’d been run over by a steam roller in my sleep, my pain was excruciating. Of course I laugh now to think of what then I thought was the “worst ever pain”. It’s probably more like a 6/10 day for me now. But when I first started taking 20 mg of Prednisone a day I thought I had surely been cured. Although just like your story, it did eventually wear off and 20mg wasn’t enough anymore. Since my dr wouldn’t let me take more than 40 in a day I eventually hit a wall and had to start backing down on it and find other ways to tackle the pain. Three years later I’ve taken over 12 different medications and treatments including chemotherapy. I’m on 7.5mg of Prednisone a day and that basically keeps me from being bedridden and able to mildly move about. I’ve gained 70lbs from the steroids and developed the oh-so-attractive “moon face” and “prednisone humpback” in the last three years. My Rheumy also informed me that my now severe Osteoperosis is a result of long term Prednsione use, meaning I can’t even get a bear hug from a friend without cracking a rib.
I used to think Prednisone was the cure all, like so many of us wanting just one day of no pain. I can’t even remember what life was like before my disease, or what a day of no pain feels like. But given the choice to do it over again, I would never have put Prednisone in my body to begin with. The bad far outweighs the good in my life concerning that drug. I hope it’s helped others more than its “helped” me.
I had used Prednisone 4, 1 gram a day tabets didnt feel the differant but put on so much weight which was 30kgs in 2 years So i am off it now and starting to lose weight slowly
Reading what you all go through helps me so much?☕️I’m right there with you. Love to all & keep sharing.
I try not to take prednisone unless absolutely necessary. I have been thru Enbrel, Humera, Remicade, Actemra and Xeljanz. In between these biologics I have continued taking Leflunomide and up to 40mg of Prednisone for pain with Hydrocodone PRN which helped but did not get me moving well or pain free. The 40mg was the highest dose I ever had taken; mostly I take 5 – 10 mg. Last week I started Rituxan infusions. Prior to the infusion I was given 100mg of a steroid by iv to counteract any negative reaction to the Rituxan. The infusion lasted 5 hours. When I was finished I got up easily from the recliner and there was absolutely no pain in my knees!! I was ecstatic-thinking the Rituxin was a miracle drug. Then my husband reminded me I had gotten the steroid. I was not able to sleep that night, was very agitated and I was hungry. But I did not hurt and I could move my arms and hands and feet easily. That lasted through the next day along with a flushed face. It did wear off on the third day and it was back to the same old pain and stiffness. My doc told me it would be a few weeks before we know if the Rituxan will work. I am thinking to myself “forget that just give me steroids”. It is a lot cheaper. But I am scared of the side effects. Apparently my magic dose is 100 mg. Can’t imagine the side effects over a period of time. So I am praying the Rituxin works. Appreciate so much what you do. Just wonder how you manage to type. My fingers and thumb are so deformed I cannot use the keyboard any longer. I have to look and use one finger. Maybe you dictate?
When I take 20mg I feel like I can move mountains. I try however to keep it to 5 and not take it very often. But if I have things to do, or family events that I want to enjoy out will come the steroids since I feel like crap every single day, it just varies in levels.
I take between 10-40mg of prednisone a day, in exactly the manner Kelly described. Taking all the dose at one time would do exactly nothing to protect any adrenal function at this point, as I’ve been way over the 7.5mg “replacement” dose for a year, and as it is extremely fast-acting for me, I can control the dose much more precisely by taking exactly enough to affect my current pain level. I do the same with my narcotic pain medication; I have been on the same doses for years because I a) do not take enough to reduce my pain to zero – my goal is a livable 3-4 on the pain scale, and b) when that goal is reached, I don’t take more.
I take 2.5mg of prednisone at a time, wait up to an hour, then take more if needed. Once it’s working, I’ll “top it up” every 4 hours or so. Keeping it at the same daily dose of 20mg that I’m prescribed, taken as directed once a day in the morning, nets me about 75% of the effectiveness of “on-demand.” I seem to be one of those people super-responsive to it.
Now talking of side-effects. This is not one I found without doing a lot of searching after I ended up in the hospital twice in February of this year with a diagnosis of deep vein thromboembolism in my left leg and a recurring saddle pulmonary embolism. I appeared to have none of the usual risk factors except obesity. Especially after visit two, doctors were puzzled. Eventually, I found this 2013 study done in Denmark using their national health records for datamining over a six-year period following 38,765 present, recent and former prednisone users who had been diagnosed with venous thromboembolism (aka deep vein thrombosis), and comparing them to the same number of controls. Prednisone use is definitely linked to increased chance of DVT’s, and therefore, pulmonary embolism. Risk is highly dependent on dose and length of use. New users and users who haven’t taken a dose within a three-month period and then take it again (as when receiving infrequent tapers) have a higher risk than the user taking it daily. Some of the doses prescribed were MUCH higher than 60mg. Study results were published in the Journal of the American Medical Association, with lots of nice charts: http://archinte.jamanetwork.com/article.aspx?articleid=1673744
So why am I still taking prednisone? Well, I’m going to be on anticoagulants forever at this point, so my risk is much-reduced. And the minute something, anything else, works for me, I will taper the prednisone like I do my pain meds when I’m doing well. But life is simply unlivable without it. I don’t get emotional effects, I don’t gain weight, though I have a hard time LOSING any. And prednisone actually considerably reduces swelling in my legs and feet rather than inducing it, though I have the fragile skin and moon-face. But the ability to walk and use my hands without severe pain, not to mention I get maybe three or four migraines a month now as opposed to chronic daily migraine, and those side effects are worth that in the short term. I faced death last month…I’m just not afraid of death. I’m more afraid of disability so severe I exist rather than live. The cost-benefit analysis still favors prednisone for me, though it would be a very different story if I’d known of this particular side effect before I was affected by it.
I was kind of shocked not a single doctor who saw me was aware of this risk factor, not the hematologist, pulmonologist, internal medicine, cardiologist, ER docs, or my pain mgmt doc and rheumy, who are usually in the know. No one. Most studies are way less long and with far fewer participants…the stats on 380k people over 6 years with the kind of data Denmark’s national health system can generate on each participant and control is pretty compelling evidence. Thought I’d throw that out there, as DVT and PE were simply not on my radar until I was facing an ER doc who told me he didn’t know why I wasn’t dead. Twice in the same month.
@Birdie Dabney – RD doesn’t affect everyone in the hands. My RD affects every joint in my body, including my jaws, and I now have RA lung, but it has never hurt my hands, bless the Lord!
Replying to Stella: I had a heart attack about four weeks ago. I’ve been on and off different dosages of pred since my RD diagnosis four years ago from 30mgs to 5mgs. I have severe RD, my Vectra score is always above 50, and my disease is not well managed. I’ve tried 6 oral meds and Enbrel and my rheumy and I are thinking of switching my biologic at my appointment next week. I’m convinced the prednisone played a big part in my heart disease. I’m only 52 years old, for crying out loud! I don’t eat junk, but don’t get much exercise either thanks to my pain symptoms. I won’t be taking prednisone again, that’s for sure. RD sucks enough without adding anything else to it.
I used prednisone for 2 weeks, starting at 60mg and lowering until finished. I was a day before leaving on a holiday and my elbow had locked to the point of not straightening at all. My week on vacation, on prednisone was amazing. It worked so well. I thought this could be the answer to it all! Of course after doing research, it sounds like it is not a long-term solution. I am still in decision making as to what drug to take….methotrexate or sulfasalazine, or try to cope longer with just plaquenil. I am at the point of not being able to move certain ways with my shoulders. Twisting, lifting, etc. My jaw has been sore for months as well. Praying for us all.
Wow, very powerful case study. I had a similar situation several years ago. After being diagnosed I was put on plaquenil which addressed the worst of my symptoms for a while. But funny thing with RD is that pain does creep up and what I thought was “normal” was so not normal. I was struggling to sleep at night, then struggling to get up and drive 40km to a demanding job five days a week. I got a bad case of bronchitis/asthma and was given 20mg of pred a day for 10 days. OMG…the first 5 days were awesome. I could walk fairly easily, did well with less sleep and felt like I could take on anything. My boss was shocked to see that I did more work that week than I had done the entire previous month. He knew my situation and he said I even walked differently and I didn’t “groan” when I got up from my desk. But…7 days in I noticed my moon face, noticed I was screaming at my hubby for no reason and I started tapering immediately. I still haven’t lost the weight I gained. I am on plaquenil still and methotrexate but they don’t close to being as effective as the prednisone was for those few days. It made me realize that I could be better too if I had the right meds. I don’t think methotrexate is the right one but my rheumy feels I haven’t given it a good chance…
This is a little something I wrote on my blog about prednisone:
Prednisone, I love you. I hate you. You have a beautiful face, long flowing hair, and very sharp jagged teeth, that drip poison. You make me feel so much better! You make me gain weight. You make it so I can move without grunting from the stiffness, you gave me a moon face. I can breath better when I swallow down the little white pill; then plow my way through the kitchen cupboards. You gave me a 6-month pregnant belly because you love to redistribute the fat I already have. Thanks to you, I’m now apple shaped, you didn’t care that I used to sport a 27 inch waist. Because you knew I’d look so…much…better not being able to see my feet unless I suck in. You give me a choice, no one should have to make. Do I take you and feel better, but hold on to 5 gallons of fluid. Or do I skip you, hurt, but not gain any weight and eat like a normal person? What’s that you say? At least you’re not methotrexate? Yes, yes. This is true, prednisone. Because even though you’ve basically distorted my body, at least you don’t make my hair fall out, and rip my lungs to shreds. *sigh* I love you prednisone. I hate you.
You’re slave – Melissa
very good Melissa. thanks for sharing.
Pred can cause hair loss although it hasn’t for you thank goodness. I lost most of my hair last year due to steroids and still struggle to keep about 75% of my hair now.
I got more information about prednisone dosage. There are many positive and negative aspects of prednisone dosage. This case study is helpful for us.
I was prescribed prednisone 30 mg for a week, 20 mg for a week, and 10 mg forever, I guess. I took 30 mg a day for four days and tapered myself off. I didn’t sleep, eat, was mean, and ridiculously jittery. Now, 5 weeks later, I’m having so much trouble walking I decided to try again, this time 5 mg a day. Has anyone else done 5 mg a day? Did it help? I am 110 pounds, and don’t generally tolerate drugs well. Would methylprednisolone be different? All help appreciated! Laura
This discusses low dose – usually 5 mg. http://www.rawarrior.com/low-dose-prednisone-in-early-rheumatoid-arthritis/
Different forms of corticosteroids can affect people differently – such as prednisolone. Side effects or effectiveness can vary. http://www.rawarrior.com/prednisone-versus-prednisolone-the-same-for-everyone/
Hello
I was recently diagnosed with rheumatoid arthritis/ polyarthritis. I’m 36 years old,I took 10 mg prednisone for about a month until the results came back, now I’m taking plaquenil. Apparently that takes up to 4 months to see real results. I’m just trying to find a place where I’m not alone and I can hear from others who are going through the same thing. This disease is excruciatingly painful and debilitating, so sorry to all of you
I share the love-hate relationship with Prednisone. I once spent a month at 40mg trying to quiet a marathon flare, and tapered myself down after no good results (only high blood pressure, weight gain, headaches, etc). I must have become immune to prednisone after using it off and on for several years. Then, a while later, my rheumy prescribed Medrol (methyprednisolone). Wow! So much better for me! The Medrol helps take the edge off my RD but without weight gain. Huge bonus in my book! However, it still raises my blood pressure. I’m in nursing school right now, and Medrol has become a necessary addition to my usual Leflunomide and Rituxan. I take anywhere from 8-16 mg/ day. I do worry about long-term effects of any corticosteroid, though. Hyperglycemia, cataracts, osteoporosis, gastritis, and muscle loss are real consequences. But we are masters at weighing the pros and cons when living with pain. We do what we need to do to just survive today.
Oh, that prednisone, I love it. My experience with it started at my first rheumatology visit (I was diagnosed 2 yrs ago). Because I had a positive CCP and multiple joint involvement, my rheumatologist was confident it was RA). I asked, “what will that steroid shot do?” He said, “if it makes you feel better, I will know more about which way we will go with treatment.” And, sure enough, after a day or two, I felt so much better. Then came the dosing for bad flares, and I didn’t hesitate to use it; consequently, the prednisone helped me out again (although I take pain meds as well, but without the roids, the meds don’t touch this RA!! I get nervous on higher doses (30mgs is where my max dose is now). I don’t have the other side effects. I am afraid of the osteoporosis, but I take vit D and calcium supplements daily. Also, I haven’t been able to tolerate the dmards so right now, prednisone is my one and only best friend (without it, life would be intolerable). I take 5mg every day. When I stopped taking it every day out of fear, my flares were much worse, and I had to walk with a walker. I have a love and fear about the prednisone. Even though the side effects can be horrible, I don’t believe I can live without it. The pain and inability to ambulate without prednisone is more than I can handle. My life has improved with the steroids.
I am looking for help weaning goff 10 mg a day – now down to 7.t5.
How slow is slow? 1 mg a day reduction? Or 1 mg reduction every 3 days???
I am not a fan of prednisone. To be honest, prednisone scares the living heezy out of me, and for the most part, I refuse to take it. After a year, my rheumatologist demanded that I fill a script of 5 mgs and keep it around for the bad days. I’m glad he did strongly suggested that I do it. Those 5 mgs come in handy a few times a year when the pain in intolerable.
Hi guys.this is actually a different perspective.My mom was diagnosed with Rheumatoid arthritis by a GP today at age 42. It pains me to see her suffer and feel helpless since there isn’t much that I can do.we havent visited a rheumatologist yet but hopefully will do so in a day or two. Can anyone describe the cost factor of this condition to me?She’s been feeling depressed all day. I don’t think I’ve ever cried this much about anything before.I’d like to think there is hope for her and all other patients with this condition. I can’t bare to watch my mom be confined to a bed all day. Is there anything that you guys suggest that i can do to make her feel better? And ease the pain a bit. She complains of pins and needles sensations which won’t go away.
Very interesting article I to hate taking pills more than anything. In 2012 after waking up and not being able to move I went to the doctor and they ran blood test that showed my body had a lot of inflammation. They started me out with the weekly steroid pack and it “helped” a little for about 3 days and then the pain got worse. So back to the doctor I went. Blood work came back positive for Rheumatoid Arthritis my RF was 75! So the doctor gave me another prescription of steroids this time is was 60 mg a day. I had to take that dose for 3 months in order to get my numbers down. I have a love/hate relationship with steroids due to the fact they helped me be able to function but they also caused me to gain 15 lbs, extreme moodiness and that infamous moon face.
i have been diagnosed with Ra for two years now. first tried methotrexate. lasted about a year. went to leflunimide. zippo…so now trying humira. was on every two weeks, but not helping, so just starting every week.the flare ups are getting worse, more frequent and severe. taking prednisone about 20-25 mg initially at onset and taper as soon as possible. i still work but becoming more difficult with flare ups. i told my husband tonight that i understand why people get depressed and suicidal, not that i am, but i understand…this is a miserable existence when it hits. i tell people that including the swelling its like some took a big hammer to my affected joint. unlike some of you, yet, i still have good days. i usually only have a single joint affected, but its usually a crucial one, a and or knee or foot. twice in my jaw. i tell people that i can’t even wipe my butt or cut up my food.i work with a great group of people who trade me jobs to get me through. i pray humira works….
It has been years since I have been on your site. Having trouble sleeping and saw article about prednisone. I developed osteoporosis from low dose prednisone and it took me three years to wean off it because it helped so much in addition to other treatment. I only use it now in emergencies. I currently am on weekly Actemra and Methotrexate injections. Also take vitamins daily. I still work full time 12 hour night shifts. Fatigue is a big issue now and the stiffness is increasing. I long for weightless which seems so challenging just to think of exercising. I worry about the strain on my family in years to come.
I had been telling my family doctor that something wasn’t right and I thought I had RA he did my testing and I kept coming back negative but my best friend said “you must be seronegative honey you have RA” ( she has RA and it her hard and fast!). I decided to in one of my flare type episodes to take some good ole vitamin P and if it stopped it or at least made it better than i knew i was dealing with some kind of autoimmune issue.Sure enough it calmed it down with in two days just like magic. Then my eye doctor asked if I had Lupus or RA and my next eye appt and I had him write my family doctor a note and i was referred to a rhuemy. Now I have been diagnosed with symmetrical PsA for almost a year. Thank God for my best friend because I would have just kept going thinking i was a whine bag. lol but gets good ole prednisone saved the day more than once for me too.
I do want to add to this that I don’t take it on a regular basis because of the side effects and the horror stories of the weaning off process. My humira is failing right now so I’m not too sure what my rhuemy will do when I go back in next
I was diagnosed with RA 8 years ago. I woke up one morning and my knees hurt and it just kept getting worse until I couldn’t stand up. My first med was prednisone and of course it got me past the flare. Then it was methotrexate…worked for a while. Then back on steroids 5mg…10mg…and now 20mg. 20mg has stopped working as well as it used too. I’ve gained weight. I sweat all the time. My face feels like it will spontaneous combust at anytime,let’s not forget those mood swings. My mother passed away from lymphoma so I’m afraid of biologics and I’m allergic to anti inflammatory meds. Aspirin and Nsaids are not my friends. I never new that just being “normal” could become a dream.
Thanks for your blog. It’s very helpful and it’s nice to know I’m not alone.
The best I have ever felt was when I was on Prednisone. I’ve been off of it for about 16 years. I never had any bad side effects. I did have an appitite but for me, that was a blessing because I’ve always been little and never really had much of an appitite. I’m always told by doctor’s how it’s not good to stay on Prednisone for too long because of what it can do to your liver or kidneys. At this point, I really don’t care. I’m on methotrexate and Rituxan and they can do just as much harm, so my thought is, why not let me be comfortable? Why not let me take something that’s going to help me move better? I’m going to discuss this with my Dr next month. Just give me 6 months to a year of being able to function for God’s sakes. And then I’ll get off of it again for a while.
Been on Methrotaxate, pills and injection. results 2 days of the week sick and running back and forth to toilet.
I have been on Enbrel, no good. Made me sick while on vacation in Mexico. Had to see a doc there. Plus not convinced it works Plus side effects I am worried about is it can cause Lymphoma. My mother died of lymphoma. So I decided to stop using it. Specialist does not believe in prednisone. So he does not prescribe it. But its the only med that works and gets me over bad days with the help of morphine. Asked the specialist if he knows how painful a flair up can be and he did not answer. So he does not know.
So at present I take Chloroquine, 2 times 200mg, Prednisone as required when a flair up starts and regular painkillers or morphine. Depends on severity of pain. Pred I take is 25mg or 50 mg for 2 days then cut in half next 2 days. Gets me over the hump.Now I seeing a different specialist who is very thorough about my history going back 25-30 years. That is still in progress.
Thank you so much for writing this, I sit here now crying, not for sadness but for now knowing that I’m not alone! You really do know how it feels to be alone in a room full of people!! Thanks again for letting me know there are others like me!!
I was on 5-10 mg prednisone for 1 year. I finally weaned over months. I would decrease my dosage by 0.5 mg each three-four weeks or so. It was hard. Now, I’m free. But actually I just swapped the prednisone for more NSAID/tylenol. I don’t feel great (it’s been two weeks off prednisone now) but I am hoping my body will correct itself and start feeling better. I think that is an irrational hope but… I am still on my Methotrexate and biologic, too, of course!
I did feel pretty good on just 5-10 mg prednisone and some NSAIDS. I am not sure what’s worse: the prednisone or this constant low-grade uncontrolled inflammation.
I can’t take Prednisone because I have diabetes. But one of my drugs I recently started taking for my diabetes turns out to also have anti inflammatory properties. The swelling went down in my feet and they went down a size. I had to stop taking ibuprofen. But thanks to this medication I did not experience increased pain. The medication is victoza
Thanks for sharing Kathy. I looked that up and they are definitely studying that https://clinicaltrials.gov/ct2/show/NCT02650206
Good news for people with diabetes and RD.
I take two 5mg’s a day.
It does not help at all.
When I take three or four it does help the pain,but not much.
I am just so tired all the time.
Not sure what to do anymore.
Thank you Kelly for your RA warrior! I was diagnosed 4 years ago with RA and it has been a very tough painful road. I have tried 5 or 6 different biological. I now take xalgenz and I feel like I am in remission!! I am so grateful and thankful to feel good again, but yet I am afraid one day it will all be back with a vengeance. I do take prednisolone 6mg a day, I cannot tolerate regular prednisone for some reason. My Dr wants me t wean off the prednisolone, it’s not easy. Thanks Kelly and everyone who posts, it’s been a big help coming from someone who never posts. God Bless
Thanks for violating your “never” Phil. It means a lot to hear from who’s out there.