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The Prednisone Roller-coaster

HOORAY! Right now I’m currently down to taking only 2mg of prednisone! Tomorrow I plan to decrease to 1mg for a week and then to completely stop taking it the following week. This is a very exciting achievement, especially since I can’t remember the last time I was completely off of this wonderful yet nasty drug. And I’ve been trying so hard to get and stay off of it, seemingly forever. Most people with RA or other inflammatory diseases/conditions will understand what I mean when I refer to taking prednisone as an unpredictable roller-coaster ride. My goal is to finally get off of this maddening ride once and for all. Or at least for a good, long amount of time.

Once being off the drug, the chances of having to take steroid medication again when you have RA are very high. I realize this and I realize how much the drug helps my joints in times of excruciating flares. I just would really love to have a break for a while. So would my steroid-induced fat, extended belly, “Buffalo Hump” neck, and puffy face. Not to mention the mood swings, anxiety, and insomnia that can all come with taking prednisone (and they do for me).

In July 2015, I experienced one of the worst flare-ups I’ve had in over 10 years. This was while I was attempting to live in New York, in the middle of a sweat-drenched miserable heat wave, and battling miles of necessary walking and stairs-climbing each day. With the humidity, stress, and the physical burdens forced on my body, it’s no wonder that I had a massive flare-up. An increase in prednisone (30 mg daily) plus an I.V. infusion of steroids was immediately prescribed for me.

The high dose of prednisone didn’t help much at first, and I was stuck hiding out in my stuffy attic apartment in Brooklyn, next to the window AC unit in my bedroom day after day. I could barely walk, my fingers were painful sausages, and it hurt simply to breathe. I couldn’t believe this was happening to me and I was immediately reminded of what these types of flares used to be like before my RA was better-controlled.

Devastated to be in this situation and having to take a higher dose of prednisone for who knows how long, I once again submitted to the power of the steroids. Being on steroids with the possibility of healing and relief was a much better option than dealing with pain, immobility, and probable joint damage.

It’s been about 6-7 months since I’ve been trying hard to taper down and off of prednisone since being on 30mg from the end of July-September 2015. It hasn’t been an easy task or journey and has indeed resembled more of a crazy roller-coaster ride than anything else.

In mid-September I switched medications, from the biologic Actemra to Xeljanz. My flare-up finally began to calm down to the point where my rheumatologist said I could start, very slowly, trying to taper down on the prednisone. Yes! Finally! Maybe then my life could start getting back to “normal.” Maybe I could start to lose all of the weight I gained from taking 30mg daily for over a month. Maybe.

As with other things in life, this plan of tapering down and off prednisone did not take a straight or easy path. During the following weeks and months I would go down in dosage for a few days or a week if I was lucky and then my joints would start to flare and I’d have to increase the dose again. This see-sawing went on mercilessly for months, severely testing my patience and hope.

Weeks went by and I’d be happy that I was able to stay at 15mg for a while. And then I was stuck at 10mg, 13mg, 11mg, 15mg, 14mg (once I got down to 15mg I refused to go higher). The good news was that I was going down, I just couldn’t get off of the darn medication. Up and down, up and down. High hopes, bitter disappointments. Over and over again.

Riding a roller-coaster can be exhausting, especially if you can’t get off of it. That’s why I’m so happy and relieved to be taking such a small dose of prednisone right now, which I’ve been steady at for at least a couple weeks. The end of the ride is in sight, hopefully. I just want to get back to living as normal a life as possible–which means a life without prednisone.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Connie Rifenburg
    4 years ago

    This article certainly has gained a lot of followers. I suppose we all know our friend/enemy prednisone well. The roller-coaster comparison is so on-spot.

    I wonder sometimes if the longer you are on prednisone, the more you HAVE to take to get relief. Has anyone else noticed this? I was told that if you are on it for a long period that your body will stop making the corticosteroid you need to live. Then you must remain on some level of prednisone for the rest of your life. Has anyone else heard or verified this information?

    I know that over the past 15 yrs or so of treating my RA, I think I have tried all the ‘normal’ meds used. They have either caused an allergic reaction, stopped working or never worked. But through all of it I’ve never been off Prednisone. Never. I remember when 2.5mg was considered a ‘high’ dose in the beginning (along with other meds). But after being on that dosage for a while, I could never go lower than 1mg. That sounds crazy (to me) because how could 1mg make a difference? Well, ask anyone coming off prednisone what it feels like between 10mg and 12 or 13mg. So finally, my lowest dose seemed to be 5mg/daily. Now, when I have minor flares, the first thing I do is automatically go up 5mg+5mg…or 5mg+10 or more. And then work my way back down with the goal of 5mg.

    When I was on Xeljanz for six months, I began having the side affect of being on a high dose of prednisone. Like when you get it IV in the Hosp. or even 60+mg/day. The need to eat when you just finished eating. The feeling that you are tired but fidgety, being irritated, angry or sadness was terrible. I noticed it within the first month I started on Xeljanz, but my dr. and I decided to stay on it for 6 months and see if those feelings went away.

    Then never even lessened for me. I gained so much weight. Yelled at everyone, or cried inappropriately. And finally after 6 months we agreed it was NOT for me. So I have been just on prednisone alone to treat my RA. (well, I take add’l meds such as pain meds and other things – but not for my RA) Once I was off Xeljanz for 2 weeks, the symptoms subsided. But the pain returned 2-fold.

    I finally was approved for Orenscia again. I was on it for almost 3 yrs but finally my insurance wouldn’t cover it and I couldn’t get co-pay assistance so I had to go off it. I just started back on it 2 weeks ago. I have high hopes as it was the only biologic (of 4 tried) that actually worked and even put me into a remission of sorts. Blood test results were the best ever. But I’m still caught on the roller-coaster prednisone battle. I’m at 10mg now with it just barely controlling the swelling and pain. To actually make me feel better I need 25mg at least and 40mg to stop some of the muscle spasms that have actually put me in the ER.

    It IS exhausting to ride that darn prednisone. And I no longer even look in a mirror to check my appearance. The hump, the round face and the weight gain of 100 lbs is too depressing. I only look in the mirror long enough to comb my hair.

    Those of you that are young and have a significant other in your life must find these things even more trying on your self esteem. I’m 65 now, but had to retire at 57 due to the RA. Now, I’m just content to keep the status quo and try to stay on as low dose as possible of our little friend Prednisone. After a while there really isn’t any other choice but acceptance.

    Meanwhile the damage done by only being on prednisone is like others mentioned. I need the right knee replaced, the left wrist and thumb are so bad with carpal tunnel, they’re basically useless. Oh, no use going on with all the other things, internal damage to my bladder muscles, shoulder rotator cuff, spine, hips, etc. I don’t know which surgery to have first. Each surgeon wants theirs done first ofcourse. But I finally spoke with my trusted primary dr. who has nothing to gain by me having surgery, and he and I set up a roadmap with Orencia as my first stop. Since that has to end before any surgeries, I wanted to give it a chance to be in my bloodstream since I’ve waited so long for it. Hopefully that will give me the best results when I have to get started on the surgery repairs of the rest of my body.

    Prayers are gladly accepted in the next 3 months as I hope for some relief and a gradual slow down of the prednisone roller coaster.
    Thanks for listening…
    Connie

  • Lauren Tucker moderator
    4 years ago

    Connie,

    Thanks so much for sharing your journey with us. You certainly are not alone and we are glad to have you here. We will be thinking of you over the next 3 months and we hope you get some relief.

    Best Wishes,
    Lauren
    (Community Manager RheumatoidArthritis.net)

  • Mary
    4 years ago

    I was diagnosed in 1996 and was on a daily average of 7.5mg of prednisone for 14 years! Sometimes more, sometimes less. To date, I have not been helped by any of the RA meds out there and just had my 26th surgery 🙁 Back in 2010, after a fourth knee replacement revision, I ended up with a joint infection, picc line for 7 weeks, and had so much trouble healing. My surgeon told me that my soft tissues were “crap” from the years of prednisone. That is when I decided to get off!! It took me six months of slowly weaning down but I did it and will never go back on. RA is a disease where you have to be proactive and work with your healthcare team to decide what’s best for YOU! YOU are in control, no one else. Infection is one of my biggest fears, so no more pred for me. Good luck to all on this RA roller-coaster 🙂

  • pinpinny
    4 years ago

    I am so glad you posted this. I was diagnosed in March with Autoimmune inner Disease (AIED)due to RA. My RA attacks the small bones and vestibular system of the ear. Hence I have loss hearing, balance, equilibrium and eye acuity. I’ve been on 60mg of Prednisone, Planquenil, Metotextrate and Sulfasalazine with supplements. This greatly improved my symptoms. I started to taper off the prednisone and now I’m down to 35mg/day. But recently felt like my symptoms return. I had to go back up on the dose. I thought something was wrong with me and all the meds were a waste of time. This is not for the weak! As I am tapering down I feel awful. I’m weak, tired get headaches, lethargic and depressed. Will this ever end? In addition, I have to learn to accept and live with hearing loss (bilateral) and loss of balance (I now have to use a walker) is there anyone else with AIED?

  • Danielle
    4 years ago

    I don’t have AIED, just regular RA, but I have tried multiple times weaning off such a high dose of Prednisone. I noticed that jumping down in 5 mg intervals made me feel even worse than usual. It didn’t even occur to me that it was the Prednisone at first because it always takes a few days for the side effects to kick in, but after I finally realized (thanks to an ah – ha moment and google) I asked my doctor if he could call me in lower dose pills of prednisone so I can taper my dose slower, and it has helped me get down to 20 mg. I’m not sure how you were tapering, but I know my doctor never suggested going down by smaller intervals until I brought it up. Good luck!

  • Geri234
    4 years ago

    I was diagnosed with RA about 3 months ago following a rather rapid onset of symptoms. I keep thinking that I will wake up one morning and this will all have been a bad dream. I am currently on Prednisone and Methotrexate and have been trying to taper off the Prednisone with 3 episodes of flaring up and having to go back up on my dosage. My Rheumatologist has been gradually increasing the Methotrexate each time so I am hoping we will reach a sweet spot where I won’t need the Prednisone. I already have osteoporosis in my spine and severe osteopenia in my hips and I’ve seen what Prednisone can do to bones. On the other hand, I don’t think my quality of life will be very good if I have to live with the level of pain I experienced before taking Prednisone. I am never pain free even with the Prednisone but I can push it to the back of my mind enough to enjoy some of my previous activities. I was even planning to try a short hike with my hiking group but the increased pain that came with the attempt to taper ended that plan for now. I find not being able to plan a big frustration. I keep hoping for a period (hopefully with limited pain) of stability where I can know what to expect – at least have a reasonably good idea. The only thing I seem to be able to count on now is that my RA will get worse over time. Anyway, I could really relate to the title “The Prednisone Rollercoaster.” That is exactly how I feel. Like my life and my emotions are on a roller coaster. There is the downs of pain and discouragement and fear and the ups of the sweet bliss of pain relief with an associated burst of optimism that I will be one of the lucky ones for whom this is “mild case” of RA.

  • Jillian S moderator
    4 years ago

    Geri234,
    Thank you so very much for sharing your story with us- you have come to the right place!
    RA can be a intimidating disease to navigate especially in the early stages of diagnosis. In addition to your medical team, our community is here to listen and support you and to always remind you that you are never alone in this battle.
    I wanted to share a few articles that I hope you will enjoy and benefit from as you begin to learn more about RA and how it affects you.

    Smart Goals: https://rheumatoidarthritis.net/living/smart-goals/

    Predni-Zone: https://rheumatoidarthritis.net/living/the-predni-zone/

    Grieving Is a Normal Part of Living with a Chronic Disease: https://rheumatoidarthritis.net/living/grieving-part-living-chronic-disease-like-ra/

    Fostering Hope While Dealing with RA: https://rheumatoidarthritis.net/living/fostering-hope/

    As you sift through and digest these articles, please let us know if you have any follow up questions, comments or concerns. We are so happy to have you in our community and look forward to providing resources and support to help you understand this disease.

    Warmly.
    Jillian (Rheumatoidarthritis.net Team)

  • lvdb16
    4 years ago

    I was DX in 2010 and sleep is both my best friend and biggest enemy. When I’m in a flare the most comfortable place to sleep/rest is the couch because it limits my movements and it is easier to use ice pack on the couch.
    If I’m taking Prednisone I can’r sleep sometimes for three nights and then I want the couch in order to read because my husband gets up at 5:00 and lights bother him Even a reading light.
    I’m stuck between a rock and a hard place because my husband gets upset if I’m on the couch more than two nights. It’s difficult to please him and my RA.
    If I go to bed in a flare I’m miserable and I if I do fall asleep I wake up from the weight of the covers on my toes or mt knees are touching and cause pain or my elbow is digging in.
    He hasn’t learned much about RA and I feel a bit let down with his lack of understanding but at the same time I DO want to sleep next to him when I can. The stress of just WHERE to sleep is enough to keep me awake! HELP!

  • Jillian S moderator
    4 years ago

    Lvdb16,
    Thank you so much for taking the time to share your story with us. I am so sorry to hear about what you are going through and realize how tough it can be. However, I want you to remember that you are not alone in this battle and we are always here to listen and support you. Many members in our community experience the dilemma that you and your husband are having. Unfortunately, RA does not only affect the afflicted person, but family and friends as well. It is important for your husband to try and understand how RA affects your life and perhaps we can provide you with some tools/articles to share with him. Also be sure to check out the comments under each article for more feedback from community members like you!

    RA From A Husband’s Perspective: https://rheumatoidarthritis.net/living/husbands-perspective/

    Relationships & Illness: A Chronic Problem? https://rheumatoidarthritis.net/living/relationships-illness-a-chronic-problem/

    A Love Letter to All Supportive Spouses: https://rheumatoidarthritis.net/living/love-letter-supportive-spouses/

    Educating People Is Exhausting: https://rheumatoidarthritis.net/living/educating-people-exhausting/

    I hope you and your husband find some of this information helpful- we are here for both of you for any follow up questions, comments or concerns you may have.

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

  • Karen
    4 years ago

    I have been on at least 5mg for years. Some days I will take 10mg, I try not to do that very often. The stuff does help. Every time I even think about trying to go off my lungs tend to say, “no. You are not.” And I will end up on a high dose for a bit to calm my breathing.
    Plus, my docs think I still need to be on it.

  • Jillian S moderator
    4 years ago

    Karen,
    Thank you for sharing your experience with us.
    Even though I understand your thoughts about going off prednisone, I am glad that you have found something that works for you- that is a big accomplishment!
    At this time, I would listen to your body and your docs as far as staying on the medication. However, if coming off is a goal of yours, definitely express that to your healthcare providers.
    It can certainly happen for you!

    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • Carla Kienast
    4 years ago

    Hi Angela: Yippee!! Congratulations. It seems that many of us have that love/hate relationship with prednisone. It’s great that (1) you’re at such a low dose and (2) the goal of getting off it is in sight. Hopefully things will stay calm as you finally get off the drug.

  • LifenowwithRD
    4 years ago

    I’m new to this game, but I was just on prednisone for about 5 weeks and just got off of it. I know what you mean about weaning off and it was just a month for me. Of course I’m feeling it in my feet and fingers, but I am determined to only take it when I can’t take it (the pain) any more. I’m only on Plaquenil with Methotrexate being on the plan to add if/when I need to. Praying I won’t but the way I’m already feeling I would guess I’ll be on it sooner rather than later. Glad I found this site it has helped me to digest this diagnosis a bit better, although I’m still scared as hell about my future. Wishing all the best to you!

  • Jillian S moderator
    4 years ago

    LifenowwithRD,
    It is good to hear back from you- I am glad you enjoyed the articles. I think that being diagnosed with a chronic illness despite living a healthy, active lifestyle is one of the hardest matters to accept. While I do not live with RA, what has helped me become more accepting of my chronic condition is thinking about how much worse I might feel if I hadn’t committed myself to health throughout my life. Another thought that helps me is learning to accept that no matter how much I want to be in control, there are going to be things in life that simply happen. Though I want to label my condition with a reason (I have to live with this because of ____), I am really trying to be okay with leaving the reason out of the equation.
    Just through chatting with you via our posts, it is clear that you are doing your very best to maximize your life with RA. I am so glad to hear that you have the support of your family and that you realize what a blessing that is.
    I understand that you were an avid runner and can no longer partake in that due to your ankles. However, have you tried any other forms of exercise that place less demand on your joints such as cycling, elliptical, yoga or pilates? I know that sometimes when you are in love with a hobby, it is hard to feel that joy when it is robbed from you and you are forced to try something else. That being said, I encourage you to try something new and try to embrace the mindset you had while running.

    I look forward to hearing back from you. Thanks for being an active member of our community- we are so happy to have you.

    Jillian (Rheumatoidarthritis.net Team)

  • LifenowwithRD
    4 years ago

    Thanks Jillian. The articles were very helpful. I really am doing better mentally now, partially because I am feeling physically better (thank you Prednisone!) When you’ve taken care of your health, watched what you eat, maintained a healthy weight, exercised, etc.. This is a hard thing to accept. Being told I can no longer be a runner due to irreversible ankle damage has made it worse. Thankfully I have an amazing husband and family who I am eternally thankful for. They have made this life changing diagnosis much easier to handle. There has to be a period of mourning for our past life though, and I’m almost to the point of acceptance. Thank you again for all the great info!

  • Jillian S moderator
    4 years ago

    LifenowwithRD,
    Thank you so much for taking the time to reach out and share your story. We are so glad to hear that our site has helped you digest the diagnosis a bit better. Always remember that you are not alone in this battle and our community is hear to listen and support you.
    Many community members fear the future living with a chronic illness. However, there is much to be hopeful about and I wanted to share some of that with you:

    Eating the Elephant: https://rheumatoidarthritis.net/living/eating-the-elephant/

    Back to the Future: https://rheumatoidarthritis.net/living/back-to-the-future/

    Clinical Trials for New RA Drugs- Hope for the Future: https://rheumatoidarthritis.net/living/clinical-trials-for-new-ra-drugs-hope-for-the-future/

    Fostering hope While Dealing With RA: https://rheumatoidarthritis.net/living/fostering-hope/

    I hope that these articles resonate with you.
    We are always here for any follow up questions, comments or concerns you might have.

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

  • Poconopatty
    4 years ago

    I understand exactly what you are saying. I have same issue with Prednisone. How is the Xeljanz working? I am on Actemra but I do not feel much better, except my blood work shows inflammation is in normal range now.

  • Jillian S moderator
    4 years ago

    Lori f,
    Thanks for sharing your test results with us.
    RA can be a tricky disease because oftentimes test results don’t reflect the level of pain experienced.
    I am glad to hear that your new rheumatologist did further testing and was able to give you a more clear picture of what is causing your pain.
    Have you found a treatment that works well for you?

    If you are interested in reading more about “normal” test results, feel free to check out this article: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/

    If you are looking for more feedback from community members like you, be sure to read through (and/or post!) in the comments under the article.

    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • Jillian S moderator
    4 years ago

    Poconopatty,
    It is good to hear from you!
    I am sorry to hear that you are not feeling much better on Actemra but your blood work is good news.
    If you are interested in reading more about Actemra, feel free to check out this link: https://rheumatoidarthritis.net/treatment/actemra-reviews-how-well-does-it-work/

    How long have you been on the Actemra for? Have you discussed other treatment options with your doc?

    Best,
    Jillian (Rheumatoidarthritis.net Team)

  • Lori f
    4 years ago

    My Sed rete and CRP showed in the normal range so I could not understand why my body hurt. I went to a new Rheumatologist and she ordered a Vectra DA bloid test. It measures more inflammatory markers. It came back in the moderate inflammation range.

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