It’s Been a Tough Week | The Prednisone Taper Begins

I did too much and now my body is paying for it. I’m having a hard time allowing myself to just rest. I’m slowly accepting this new diagnosis. Hope you all are well.
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My name is Samantha Wayne and I have been creating advocacy videos on KZbin since 2009. I created Live Hope Lupus in order to create a space where those with chronic illnesses could get information and support. Please subscribe to follow me along on this journey!
#lupus #prednisone

[@HealWithSamantha]

Sorry for the quality of this video. I will be getting back to my regularly scheduled videos soon. Hope you all are feeling good today!

[@MakaveliFan71]

What medication have you tried other than Prednisone? Did you ever consider a biologic Agent such as Humira, which has much milder side effects?

[@woods81jfe]

Get off meds do what I do diet Omad/keto/carnivore diet and plenty of water preferably white meat only no red meat no carbs/veggies no sugar/fruit no nuts or seeds no processed food or drinks and then be patient and be amazed

[@juliemaggard7094]

Hang in there!!! Remember, the prednisone is making you feel worse (mentally) you are tough and a fighter and are doing great!!! ❤💜💙

[@HealWithSamantha]

Julie Maggard this is true. Thank you for the reminder. 💜

[@sarahrune5318]

I’m sorry you’re having a hard time. As you said we can relate. I’ve forgotten what “normal” feels like.

[@clare1971]

Me too- a long time ago

[@meredithkat07]

I am right there with you trying to taper feeling like I want to die sometimes because it’s to much. The Lord is my refuge and strength. I cry out to Him daily and He helps me survive this awful disease. Sending hugs love and prayers. 🙏❤️🙏

[@gypsy197d]

Sending hugs. I know those bad days all to well. Hoping for a better tomorrow.

[@vendetta1922]

I sympathize with you on the "getting up to do a chore...and regretting it. I have 4 (yes count them) 4 autoimmune diseases. After being in bed for almost 2 years I changed doctors and she put me on Prednisone. The energy that flooded thru me was wonderful. I could do things again. But I overdid and paid for it. You have a sister in pain and lack of energy sweetheart. You are so young to be battling things like this. I'm 70. I have been collecting (LOL) autoimmune diseases for the past 18 years. You will be in my prayers.

[@emusedone]

I’m sorry, I hope you feel better soon. I have SLE and Achalasia and just came off of recent prednisone due to getting viral meningitis out of nowhere (compliments of lupus). I understand in my own way your struggle and you’re in my thoughts. Thank you for opening your journey and sharing. It helps to know I’m not alone in this struggle and there are super strong people like you dealing with so much more who give of themselves to help. You’re beautiful inside and out, just know that and you’re helping me get through tough days 💜 but I hope you feel better soon.

[@HealWithSamantha]

Emusedone so glad you got rid of the viral meningitis. That’s a scary one. Thank you 💜

[@PomPomTimy]

I understand so well what you are going through hun. It's like a catch 22 almost and it's not easy. I struggle with emotional/ psychological aspects of SLE almost on a daily basis. Despite organ failure and 1001 other issues I push myself waaaay to hard. BUT it feels so good sometimes to feel normal. My uncle told me off once for drinking a bit of beer, cause of my kidney issues and meds I am on. But he doesn't understand that I am 25 and sometimes I want to do what people my age do. Even if I will pay for it later. I just can't lock myself in 4 walls, let lupus win and stop living my life. I want to create memories and unfortunately most memories need me to lift my bum off the couch and do stuff. You will get through this hun. You are strong, courageous woman. Even the strongest got their weak moments, just don't give in to them

[@terri4353]

I’m so so sorry for everything you’re having to go through. I hope you feel better soon. I hope your family is weathering this storm as well as I’m sure It’s hard on everyone that loves you. You have a wonderful support system and thousands of people behind you. God bless you. You are helping so many others.

[@barbarapaul5804]

I know exactly how you feel, because i am on the same page your on. This month has been very crazy for me. Every week I'm sick, either lupus related or Sjogrens related. You are not alone. We are WARRIORS TOGETHER. Much love 🌷🌷🌷💜💜💜💜🌱🌱🌱🌱💪💪

[@ciaruuhhvlogs]

Watching in July 2021. I feel your pain, I am going through the same at the moment. Thank you for sharing your journey with us.

[@johnpower1680]

I’ve been off prednisone for nearly 1 month fully I was on it for 5 years after a kidney transplant it sucks .I’ve been feeling up and down and very stressed out and depressed also feeling week and not able to do things I’ve been very argumentative with people I love but it gets better and it will always get better never worse just keep fighting and u will be ok 👌🏼 hope things are good and I do no this video got made long time ago but I relate to this and thought I would leave a comment for my people going through prednisone withdrawal and the lucky people who get to come off it as we no what it does to are body’s and conferdence but in Jesus name things will become better for all of us godbless

[@phylliscruz8483]

I know how you feel. Drained, fogged, weepy, in pain and yes, some days defeated. I wish i could just hug you. We are not a burden. Today is my down day, slept for hours yesterday, but im still tired. Just go slowly, i tend to push myself and pay dearly when i overdo. Blessing little sister.

[@LifewithKrystle]

Sorry to hear you had a rough week. I did too. Have a cold plus strep throat and been basically in bed all week. It’s been terrible but at least my throat pain is gone thanks to antibiotics but my fatigue is still bad, appetite barely there and my sinuses are still bothering me. Ugh! Hope we all have a better week next week. Back to sleep I go.

[@HealWithSamantha]

I’m glad your pain is better. Strep on top of everything else is awful.

[@lillianzybarra6405]

Sorry to hear about your flare up, I noticed you hadn't posted and I began to pray for you, my husband tells me "getting old sucks " take time to cry, and get some rest when you allow, Stay Strong 💓 God Bless you

[@HealWithSamantha]

Lillian Z Ybarra thank you. 💜

[@andreabrown5731]

I had rough week also. Prednisone made me swell like a grapefruit and I literally cried everyday. I know its rough right now ,but you got this in the bag and you are a warrior. I love watching you ❤❤❤ you give me hope with lupus.

[@emilyxcappasola]

I hate to see you so down, i know exactly how you feel. Just focus on trying to get better and try to do things to distract you like maybe painting or reading or watching movies or writing in a journal... i know it gets boring after awhile, but i’ve been in a bad flare since april 2018 and have gotten to leave my house/room a handful of times since then so you have to just find things that will distract you as best you can... i’m going to start tapering down on my prednisone soon as well, watching your videos helps me to get through so much of my illness and when i have a bad appointment or am having a bad day with my lupus, your videos put a smile on my face and remind me to keep going. So thank you for being so inspiring to so many people out there with this illness including me. I hope that you start feeling better and i know that you can get through this 💜 you are so strong.

[@MrsHjort]

I think we all know what those days are like. They suck, but it will get better again. It's okay to feel the way you do, and it's okay to let go once in a while and do what ever you need to do to vent those feelings out of your system - need to swear and curse, or cry like a river, or both, it's all fine. Better to let it go than to keep it all bottled up inside. At least it's like that for me - it helps me deal with and process things, and move on. It's ironic, but I think those moments of "weakness" make us stronger. Hope you feel better soon!

[@sturgis1018]

I sure hope you feel better! Glad you are getting some rest today. Thank you for being so real and sharing your journey with us.

[@staci8596]

Oh girl I so relate to how your feeling.. It is ok to get frustrated and vent.. you need to do that or it drive you crazy! Keep your head up. Rest when you can and keep doing you.. I dealing with moon face from Prednisone right now myself. I didn't notice how bad, as I normally avoid mirrors cause of rashes etc, when I took a picture with family.. I looked rough! Prednisone is a life saver but the side effects make me want stick my head in the sand! Thank you so much for putting yourself out there and sharing with us. Your videos let me know I am not alone in this fight and life does go on..

[@sparklingstarzz5126]

Stay Strong! Hugs & good vibes sent your way from Ohio!💜

[@jessicahare8518]

I understand so much Sam xx I'm sorry you're not feeling great.

[@loridean8936]

Sending you love and light. Hang in there and get some rest. And know that you are loved😊

[@susies001]

Take a moment for yourself decompress and then move forward. You are strong! Everyone needs a moment. Hugs.

[@JzDisneyB]

Keep fighting. I know what you're going through; did way too much and have been in a flare for over a week and it hasn't let up yet. Prayers for you that you start to feel better.

[@kittybriones1703]

thank you for sharing your story.. my niece is going to the same. you sharing your story has helped me understand so much God bless you for that.. prayers going your way sweet sweetheart..

[@jamiesmith5391]

I can relate. I want to thank you for your videos. There educating, accurate, and they give me hope to get through bad days.

[@helenabobena]

We all adore you and are here for supporting you just as much as you support us with your posts and videos! I see it’s a totally overwhelming day for you, obviously, but you’re a pro at this, and it’s just as much about acknowledging the vulnerability as it is about keeping going. Sometimes we just can’t. Cry it out if you need to, rest in any way you can, and seek gentleness/pampering. The best advice I was given recently (while having a day like this/I definitely don’t usually want advice haha) was “treat yourself like you were taking care of a baby” 💜🖤 Sending a ton of love your way!

[@HealWithSamantha]

helenabobena that is great advice. Really love that and going to use that on myself the rest of the week.

[@clare1971]

Bless your heart, I can only watch this channel on better days because it’s too much a reflection of my own life. I was diagnosed with lupus and fibromyalgia 30 years ago just as I left college and am now 46. Then due to so many years of high steroids for those conditions I was diagnosed with osteoporosis as well aged 36 . Life is daily hell so I understand everything xx

[@cward970]

hey little sis still doing my med adjustment it hard now BUT i have new litter of pups 12 hrs old there is life here SO do not give up this is LIFE GOD BLESS ALL

[@estervaldez-donohue750]

Be strong!! Remember that this to shall pass.

[@anonyme3123]

Oh sweetie, I am so sorry you have such bad time. I see my daughter going trough the same things that you are and it break my heart. Hang in there. If you evervisit Colorado we would be more happy to meet and host you. I keep you in my prayers

[@unchilepicoso2502]

Stay strong! Your very brave.

[@michaelinekelley-boyet1713]

Love, Prayers and Hugs your way, Sam.🙋❤️💪😢

[@thatnorachick]

I could relate so much. I hope you start to feel better and best of luck on your taper. I'm starting to taper again too and I just want to get through this already. Hugs. You are not alone.

[@hindyehia196]

We’re too connected to you that it is hard to see you like that although you’re expressing a daily state of all of us. Hope to see you always fine❤️

[@jimmontgomery4703]

Hang in there girl. Prayers your way.

[@maxiebranch9660]

I can relate to what you’re going through as I am dealing with the same struggle., Keep strong.

[@jadedbeauty2013]

Hope you feel better 🙏🏻 Thanks for Sharing.... i too have my days more bad then good but I try to say positive 😔

[@Fldavestone]

I too am coming off,but proper nutrition is my saving grace.I limit sugar and caffeine.I keep my omegas in balance. I avoid processed packaged foods and vegetable oil.I am on 1.25 mg now for a week then zero.They said i would be on it 3 years,i was on it 6 months,i am 64 wohoo!!

[@vanessasalazar3865]

Praying for you!

[@heathermills29]

So sorry love, I can definitely relate. It's been very rough lately too and today I almost had a melt down. I'm on edge at the moment with the fatigue and joint pain . All I want to do is go to the gym and release some of this tention and stress but I can't even do that at the moment because I'm trying to save all the energy I can for the next day. Also I've been patently waiting for some time for the benlysta treatment. You are beautiful, brave, strong and so inspirational. Thank you for sharing as always. Hang in there hun. Big hugs to you🤗🤗🤗🤗

[@chloemahr]

Hey chicky its ok to not be ok xoxo i go through these days regularly. You need a you day! Watch a movie that you love, have naps, eat food that makes you feel better and have a cry xoxo remember this moment is temporary andbetter days will come 💜 gentle hugs from a spoonie warrior with RA & fibro 😘

[@jessicamartinez138]

I'm sorry hang in there praying for u.

[@cward970]

hang in there little sis you are strong too many meds i think myself also GOD BLESS

[@rws925]

I've been watching you for quite a while and that can relate to a lot of things you say. I understand it feels like one big merry-go-round. Almost like a bad dream that you can't get out of Thank you for sharing. Forgive me for being forward put on my phone you still look beautiful

[@reneerunyan3583]

Sometimes being vulnerable and having a good cry or cussing at the vacuum cleaner is what you need to do. Getting angry with God is totally ok, he can take it. Being tough includes breaking down, denying it is for the weak! I’m here and you’re in my thoughts and prayers.

[@LisaLisa001]

I'm trying to think of something inspiring to say and then I'm like, what if someone said that to me? Well, nothing fits. I know that cuz that's how I'm feeling and there's just not a comforting word out there that could do the trick. I wish I could hug you, cuz I think that's what would work for me. But just know that one thing is true: you've successfully made it through every single day before this one. I know that cuz you're here. You're going to make it through this one too. You don't have to be strong and hold it together because damn it that takes a lot of energy. Just be. Feel what you're feeling for the time you feel is appropriate then do whatever you want. If you wanna feel it one more time, do that. But please don't think you always have to be so brave because you don't have the energy to do that too and that's perfectly acceptable. Only person judging you is you. You're beautiful you're making it thru. You got this. Get some rest and just be. You can stare at a wall, think about mandala dot painting, how you would reorganize a sock drawer in 4 different ways, or just stare at that little bit of dust on the ceiling fan. That's enough. That's a lot. I've been doing something that sounds silly but I swear it is so nice. Talk to yourself in the third person very softly and lovingly. Only get one thing out of 20 on your list done? Tell yourself how awesome it was for making the list and checking it and that one thing is juuuuust fine. Your body and mind have made it here. Thank them sincerely. Then realize you are all one. Sweet dreams.

[@zizia9060]

Hi Samantha. I'm so glad you posted today. Despite how you're feeling and your health condition, you took time out to engage with us- thank you😘. I read a message on Pinterest, 'Your illness does not define you. Your strength and courage does'. And I just thought of you.💕

[@HealWithSamantha]

Aziza K thank you for sharing that quote with me and everyone else. A wonderful reminder!

[@trafficjon400]

I know how you feel and soo sorry'. i went off pred- triamcinolone 12 months ago . horrible week depressed moods brain fog and now getting much better but still do not go out much. pray i never take steroids again as i am putting it on my not to take med list. Hang in there it will get better and your spirits will start to lift wile your adreanal glands get back to normal.

[@reneerunyan3583]

Oh no😭😢🙁 walked past the mirror and I have the butterfly rash. I guess I’m going on prednisone.

[@dantewarren3829]

I was diagnosed with dermatomyositis when I was in the seventh grade and my parents finally took me to the hospital when I couldn’t walk anymore I was on prednisone for seven years 65 mg. So when I get to high school and they start leaving it up to me to take my medications myself if I missed a couple days I would just double up thinking I was doing the right thing and I did that for a while. But by doing that it was messing with my whole body physically and mentally and I told my doctor that I was having mental issues like not feeling myself feeling like I was empty feeling like I was just going through the motions not feeling happy nor sad just feltLike I was dead inside so I did some investigating on prednisones hey song with it causes but I never read about the importance of tapering off so after seven years I just stop taking it I was young and dumb and I was hoping that by me not taking it anymore that I will get better but I got worse moved swings just not being induced to do anything but I thought I was more crazy until I read about why tapering off prednisone was so important so till this day I’m still struggling with it I have moments when I just break now by myself I have a wife and two kids and one on the way and it’s hard to give them the love I want to give them when you’re always feeling down but I’ve been reading up herbal medications that some seem to help me out a little bit but when I go to the doctor and talk about itAnd ask him about prednisone long-term symptoms they give me the runaround because this is the number one selling drugs so they never like to talk bad about it so I just been going around looking for a good doctor praying a farm in one day but I do feel your pain and if you ever need to talk let me know cause it’s good to talk to somebody that’s going through the same trouble as you

[@smgillera]

I feel you...

[@buffysummers5080]

I am so sorry honey. I'm just coming off a flare while going through a hep c cure, and fighting my convalescent that told me I don't need their care. Wth? I can barely walk and my jaws hurt. After the flare. God bless you all.

[@HealWithSamantha]

Katrina Burrell it seems to be never ending. I hope everything smooths out for you & the flare gets better! Never fun when outside sources are causing us more stress.

[@bbqsmokernc7252]

This is a horrible drug. I'm dealing with it also. Good luck.

[@ЕкатеринаГолуб-р2ж]

It's always up and down, you know that if you feel terrible today it might be different tomorrow. Keep calm, girl. Everyone in this world is suffering from difficulties, but they all are very different. Your problem is rare, but it doesn't make you isolated. Life is tough for many of us

[@gabytejeda6332]

Hello I feel u

[@bigwrig0485]

How you feeling now? I have MS and just started my taper. I have a problem with the energy boost from the predisone making me do too much so coming off sucks. You have that problem too?

[@caitnee6863]

A really terrible joke that I hope will make you feel a tiny bit better: What do you call a nosy pepper? Jalapeño business. Much love, Cait

[@LisaLisa001]

That's awesome. I love it. My 10 year old told me one... She said what kind of steps are rude? The stairs/stares. Lol.

[@LisaLisa001]

@tecnoklaus bwaaaahahahahahaha that was so cute, I love it!!

[@jnlione1]

My wife has been in a flare for several weeks now. Dealing with the pleurisy, chest pains, weakness, etc etc.. Shez been on Benlysta home injections for like 3 months now & dont seem to be helping.. I know your struggle.. Idk if you would be interested in chatting with my wife, & compare notes via email, but if so, comment here & I will shoot you her email address. She has had lupus now for about 12-13 yrs now, & like you, still suffering & struggling.. Anyway, whatever you decide, feel better.. ;)

[@niahmothiba9750]

I also take them yesterday and today I feel like yesterday I was supposed to kill myself I'm not feeling well I feel like my body is not mine this medication is not ok

[@kristendees3860]

Please read about nutrition & keep an open mind. I know EXACTLY how you feel right now. I have been going through all of this mostly alone. You have been a huge sense of support & light for me & so many. Thank you so so much! Lifting you in prayer sweet love. It is so so hard. I am reading a book written by a Dr who uses both a modern & natural approach & education. She claims to have put her Graves disease & her patients' autoimmune diseases with 'The Meyers' Method.' I just began the book & have not began the diet or protocol yet but I will be starting a youtube channel & documenting my results! I am not trying to badger you like you have felt people have done to you in the past, just trying to help you feel hopeful again because I FINALLY do!

[@HealWithSamantha]

Kristen Dees I do believe nutrition has the power to heal! I have red Dr. Meyers book and plan on working towards something like that. Best of luck on your journey!

[@kristendees3860]

Oops. I meant to state that she put them into remission. Anyhow - That's great! I know the lifestyle is going to be next to impossible for me to adopt but I've never been more motivated & fed up! I've been suffering from anxiety & suicidal thoughts because life has felt so hopeless for so long. It's not. That's what I wanted you to know. I know you know. Sometimes it's just helpful to hear it. I know you're trying so hard & always have! That's why I admire & follow your journey!

[@MakaveliFan71]

You are Beautiful :)

[@hondaatc1987]

You are beautiful

[@njepo3840]

Tray raw vegan, but you must by radical. You not enaf last time.