Sam this is the best! And we totally get the brain frog!

Prednisone is the devil. However, it kept the lupus pain at bay for a while .😩

I have Meniere's Disease and your videos get me through some of my dark days. You are seriously an inspiration! Never give up!

Very happy you are feeling better and I like the vlog format! Thank you for all the information you provide, its helped me deal with this in-between stage of not being officially diagnosed with Lupus yet but my Rheumy thinks its highly likely.

Just came off 60mg and at 40 now. This is month 9 of it trying to get me out of a severe sarcodoiosis flare. And the sick routine wears me out too. It’s there but I want to be normal and happy. Love and hugs to you. New subscriber here.

I’ve been on prednisone for almost 7 years! It’s been a constant battle to try to lean off of it. Currently I am alternating 5 mg and 2.5 mg every other day. I can defiantly feel it.

I am on day three of my second course of the year and just decided to search videos! So grateful I found your channel! I am so sorry that anyone has to go through what I do, but there is definitely something to seeing someone similar to yourself going through it and killing it instead of the other way around! I have always thought “we might not have come with a Manuel, but that doesn’t mean someone can’t make one.”! So I am glad you did!!! I hope you are feeling well in the present. Please know this DOES help people! Thank you.

So loving the vlogs. I totally get everything you're going through. A short or long shower will drain me so badly and quickly. I only take 5 mg daily of prednisone but I have the same side effects as you describe. And brain fog, insomnia, moon face...😫😔. I follow you on Facebook but the vlogs are great. Take care of yourself and stay strong!! 💪🏽👍🏼🙏🏽🤗💜

“Trying to get back to health... which is why I put the Oreos in my overnight oats!” 😂🖤💜 love it, and I totally do the same stuff and go 🤷🏼‍♀️🤷🏼‍♀️ prednisone made me do it. I liked this video a whole lot - it’s cheered me up a ton and made me giggle! Hope to see more of these for sure!

Sweet and kind Sam💗. I completely understand how your feeling and it sucks. Am still on 10 mg of prednisone for maintenance and girl I used to eat everything sweet even in my sleep (my weakness ice cream😉😋really) I also have platelet issues, blood clots, anemia. So i have sorta good days and like you just said i do the best i can. Theres alot i have been thru with lupus, but 22 years of living with lupus, am so happy to be alive. Am so proud of you, always with a beautiful smile and positive energy I love you and your always in prayers💜🦋🖐💟🤗😘

I really like your confidence, that is great, be strong...Good bless you.

Thank you for doing these videos. Helps us all.

I was diagnosed with systemic lupus in 2016 at 19 after my gallbladder and brain were attacked. I have to do 6 months of chemo, but even that was a blessing because the doctors didn't expect me to even live after I had three back-to-back seizures. Since then I've been on off prednisone ( at the highest 85 mg.,where I would sleep maybe four hours every week and my face was so huge I couldn't wear my glasses) and in and out of the hospital (this summer I was literally hospitalized all three months of Summer and when the doctor said I have to go back on just 40mg prednisone, I have never cried harder in my life. I'm just now tapering down to 5 mg and I'm still going through insomnia, and literally just going back to work now after finally deciding to take a break from school, and that was mainly due to all of the side effects from prednisone really affecting my sleeping schedule and overall self-esteem). Thank you so much for posting these videos, seeing other people going through something as complex as lupus really does make it feel less unbearable and gives me hope. Truly hoping nothing but the best for you, I don't know you or anything but you're very strong for putting such a vulnerable experience on such a public platform!!

Feel better get lots of rest 💜🙏🦋. I’m on prednisone also.

I like the vlogging videos!

I am right there with you, lately it's been so cold here in Vegas and I just moved into a new apartment and our AC/heater is broken and so inside its been the temp its been outside. Also I hate waiting for my hair to dry, mine sometimes can take over 24 hours to fully dry. Plus I try to avoid using heat on it so no blow drying. I like vlogging style type of video even if you're not doing much throughout the day.

I was put on high dose prednisone 80mg this past summer and i didn't feel normal till i was down to 40 as well but i am still on it because i have to taper slowly now and i am down to 8mg. I gained about 60 lbs since June which is a lot, super moon face, depression, broken teeth and the worst it ruined my bones in my back and degenerated my disks that i ended up needing a laminectomy two weeks ago. Mind you, I never had back problems before Prednisone. My suggestion is take it till u don't need it and get off as soon as u can handle it because long term prednisone use will cause more harm than good. I regret it so much and I am still undiagnosed auto immune/possible lupus doctor said i tested positive then negative so he cannot officially diagnose me. They put me on it because my sed rate was 108 in June. Good luck and thank you for sharing this I have been following your journey for a while and you are a fighter. Hope u start to feel better soon.

Hang in there. I'm a lupus warrior of 22 years. Recently awarded disability. Prednisone is the devil.... but necessary. I take 5 mg daily. Keep up with the vlogs. Show videos of what you cook/eat, how you clean, exercises, yoga, crafts, read.... anything.

I have severe lupus and I’m still on prednisone. I know how you feel just keep it positive.

God bless you Girl. I could not imagine going through this at your age or if ether one of my daughters had to go through this.

I like the moving around and day in the life type vlogs. The sit and chat are ok but not my favs. Glad you’re feeling better even if it means taking the drugs. Sadly we don’t always have an option when it comes to living with Lupus.

I love your videos and personality.

So glad your labs are getting better. Such a love/ hate relationship with Presnisone. Love the energy I get from it, but the side effects are awful. I have to do a Prednisone burst to get through the holidays...and I freaking got stuff done, but ate all the things and got no sleep. Fuck Lupus. Would you talk about working? I know you went to college, but I wasn’t sure if you’re done or still going? If it’s too personal I understand. I am 34 and haven’t worked in 8 years because of Lupus, and miss it so much. Last month I had my disability hearing and I’m feeling pretty good about it. It’s just so bitter sweet. I hate to be considered disabled at such a young age, but it will also help me because, money. I dunno, I was just wondering if you have to deal with this too.

Loved this ^_^ hugs! Id like to colour today... i have been housebound since christmas so im hoping some colouring will help get my mind feeling less foggy? Oh desnt prednisone taste yummy lol i am on 5mg daily been on it for years. Hope your day kept getting better and better!

I was just diagnosed with secondary sjorgens but my primary disease hasn't showed up yet in my blood work which is odd but I know its SSA-RO SPECKLED PATTERN

Thank you so much for your honesty in dealing with these auto immune diseases. My daughter, 33, was just diagnosed with sjogrens so I’m doing a lot of research on helpful pain relief that may work for her, but she isn’t very receptive at all. I’m wondering if I need to back off so she can work through this new diagnosis herself? I’d rather I go through the internet since there are horror stories out there that she doesn’t need to worry extra over. She has chest pain, some back pain and random leg pains, resting heart rate goes up for no reason (help me anyone with answers about that!), dry eyes, dry mouth. I’m going to get her the back pad hoping she’ll make use of that. She’s been to the cardiologist, pulmonologist, ct scans, xrays, blood tests. So she’s done everything needed so far, but I’m just afraid of her not taking a proactive enough approach and that will cause even more symptoms and damage to organs. Is that the case? How quickly does she need to address all of her issues with this disease? Is there time for her to just process all of this?

My friends probably think I’m nuts because I’ll forget what I’m talking about mid sentence and just say “brain fog”, then continue like nothing happened lmao

Damm i feel so bad for u i been there where u are right now and it suckss i hate prednisone i retain so much liquid the moon face was the worst feeling i hope u feel better soon god bless

Can you make a video about your medical cost? What medical insurance has worked for you or what resources have you used?

I’ve been on now for 2 years for severe allergies and asthma..I’ve gained 100lbs and I now use a walker because it’s made me so weak…it’s so difficult. Hugs and love to you

The last time I had to take Prednisone, I was up painting the office at 0300! LOL. Then I got a painful wart like sore on the ball of my foot. I do not like Prednisone. I've only been on it three times since my SLE diagnosis in 2013. I'm trying. Loosing patience with this disease.

Your hair looks great very healthy anything specifically you use?

Question what dosage are you on ? They are about to put me on 60 mg I’m freaking out so I need some input?

If you add some light background music I feel like the video would flow better! Also, if your moonface does go away can you talk more about it and how to deal with it? Cause I was on heavy prednisone a few months ago, and one cheek is still a bit more swollen and makes my face uneven /:

Great video. I was on pred for 2 years not fun I gained over 100 pounds. Still trying to get the weight off been on and off it since 04. But now for emergencie Flair's as I call them. Your inspiring ty

I now take 5 mg pred for rheaumatoid arthritis I eventuality lowered the dose myself it has. Caused a lot of problems

You still look gorgeous!

I was on it for two years constantly know I am on and off with it I take plaquiel and methatraxate and folic acid and omeprazole, I am having sever problems with stopping infections but I’m working on it

Hi Prenisolidine how long you taking & any side effects observed, what is the dose..it effects to the body...

Hey hun that music that came on around 6 something playing in your video what’s the name of it :) please

Hey Sam, do you still take Methotrexate?? Unfortunately she up my dose today to 10 pills once a week, also my Rheumatologist was wanting to put me back on the Prednisone but I'm so afraid of it the side effects was so horrible

Prednisone is the only thing that helps me. Anti inflammatory meds help, but not like P. I did a burst over Thanksgiving I had a lot to do and traveling, I learned that I can take to much but 5-10 mgs is the sweet spot for me. All the side effects to me have been worth it. I think you should start a #becauseprednisone trend. Going to do a little more yoga today.

Does prednison have less side effect than methyl prednisolon? Thank you

Do more videos like this!

Hello rebecca and fellow autoimmune sufferers.....I have read that having injections of Triamcinolone (a cortisteroid) can be less debilitating side effects wise to oral steroids.....Has anyone tried "Triamcinolone" ? What are the pros and cons of the injection vs the oral steroid use ? I'm new to all of this so any opinions,experiences,or knowledge would be greatly appreciated....

Do some of you have the "malar rash" over your eye lids as well?

I think the prednisone has made my blood pressure high? The last few dental appointments I have had they took my BP and said it was high. In fact, once the dental tech said I was “a walking stroke.” That has worried me since. 😒

Starting my 50mg course and get a bone marrow test in 7 days. I'm at my lowest trying to see a light. I don't deserve this much pain.

I completely relate to the brain fog🙈

Brain fog lupus! I felt so normal when I forgot

About to start P😟. Is there no sleep at all?!:/worries me more than a moon face. Is fatty belly and neck real while on P?

I have Hemolytic Anemia, AS and TMJ. I just had my 3rd hospitalization for HA and am back on prednisone after 4 days in the hospital and two blood transfusions. Supposed to be taking 60 mg but I'm only taking 30 mg because of the side effects (my Dr. wouldn't listen to my concerns so I'm just flat out lying to him). Already so achy. It destroyed my bones (broke my wrist last year doing nothing) and have had osteopenia turn to osteoporosis. It's made me gain so much weight. It's the devil's drug. I'm starting 4 weeks of Rituxan injections next week. Hoping to taper off soon. Oops - just realized I didn't take my prednisone yet tonight.

I have been on P for over three years now and can't go off it. It is the only med that really helps me. My research doc wants me to go off it so he put me on cellcept 1000 mgs twice a day about a month ago and if that does not help in another month he wants to give me rituximab infusions and he says that WILL stop the inflammation. My inflamatory markers ESR and CRP and rheumatoid factor are always sky high. I am dxs with lupus based on positve ANA, dsDNA, phospholipid abs, low white cells, low complements, Lupus Myelitis and extreme inflamatory arthritis with severe effusions with extreme pain where every joint has been affected at one time or another. I even have had several joints drained and many cortisone injections. And I even had a small brain bleed. Its like years off pure torture. Lupus Sucks.

You always look so beautiful.

Just got put on 20mg prednisone yesterday and I slept 3 hours last night. It’s going to be a long few weeks. Also girl totally feel you on the showering at night

My autoimmune symptoms are lessened when I avoid grains lectins dairy and sugar. Not saying it will help u but sadly it helps me but there is very little I can eat 😭

I have lupus too! On P for 50mg for now. Hug you!

I was diagnosed with Lupus back in November of last year. Just found out I may have kidney involvement so prednisone and cellcept is in my future. I'm on plaquenil only right now. I would love to chat with you since you been dealing with this a long time.

6' 46" Wow! Beautiful.

Hmm my doctor told me I might start on this tomorrow. So I looked up life right away on KZfaq haha. I’m 32weeks pregnant and my baby girl is giving me kidney damage 🥲 I don’t smoke or drink. And there’s no history in my family of kidney disease or lupus. But my ANA test came out positive. Seeing the rheumatologist tomorrow for more blood work and possibly starting this steroid due to high creatinine levels. I just hope everything goes back to normal after I give birth 🥺🥺😢

I was put on prednisone two weeks before getting married. Everything got done because of energy but gosh was I swollen lol

You look good

How about trying the whals protocol for autoimmune diseases? Look up Dr. Terry Wahls on KZfaq.

You say everybody is different. But I don't want to think about our differences. I only want to know what's the same. Truly we are blind to sameness. Oatmeal is right for nerves. Ok what of moonphases. Ever try zanaflex.

You’re hysterical...30mg of prednisone. Something new, I want to learn how to ice skate but my family is not so keen on the idea (Menieres Disease) Here’s something to watch on KZfaq , search UGA mascot meets Texas Longhorn, BEVO. I need the recipe for the overnight oatmeal. Sorry 40mg of prednisone...🙄

The problem with the medication when you drink it after two hours when you take a water you'll feel dizzy again you have to go back to sleep your body is itching again you don't have a life if you're drinking this my friend

Lib watch how much you take cause it makes you eat a lot and puts weight on your joints so be careful

About to start P😟. Is there no sleep at all?!:/worries me more than a moon face. Is fatty belly and neck real while on P?

About to start P😟. Is there no sleep at all?!:/worries me more than a moon face. Is fatty belly and neck real while on P?