Let's Talk: Prednisone, Lupus Flares, and Going Out
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- Опубліковано 21 гру 2021
- I enjoyed filming this video and sharing what is currently on my mind. How are you all holding up this holiday season?
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My name is Samantha Wayne and I have been creating advocacy videos on UA-cam since 2009. This channel was formerly known as Live Hope Lupus and was created in order to start a community for those living with chronic illnesses. In September 2019, I transitioned to a plant-based diet and I have found my body is responding well to it. Along with my lifestyle change, I am learning to alter my focus more on the positive. My current content will focus on my healing journey, what food I am eating, and everyday life. I will still be posting an occasional update about my health. I hope you all are ready to join me on this crazy journey of healing. We are all learning how to navigate this life together. If you have subscribed, thank you! I appreciate your support and look forward to talking with you all in the comments.
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DISCLAIMER: This content within this video is not medical advice. The purpose of these videos are for general education and to share my own experience. This content should not be used to self-diagnose or self-treat any health condition. Please consult a healthcare professional before attempting anything in this video.
Glad you are talking about Lupus again. I have had Lupus since 1989, also Sjrogrens, Fibro and RA and Osteoarthritis. Prednisone is no fun. It helps, but it's side effects! ugh!
You look fabulous by the way. Speaking as a person with lupus as well. And I also am taking prednisone wish I didn't have to, but what are you gouna do huh.
Thank you so much! Yeah, we gotta do what we gotta do. I hope it is not for the long haul for the both of us!
Thank you for talking about the hand shakes with prednisone! I’m on 50 mg currently (tapering down from 80 when I presented) and the hand shakes have been rough (mostly because my job requires a lot of dexterity and fine motor control), but I feel like I either can’t find others talking about it or info on the internet makes it seem like a critical emergency. A relief for sure I’m not the only one
So nice to see you again. Yes, I was having a flare up. Not fun. Just weaned off of the prednisone. Still have a puffy face, but it's ok. You look amazing
Thank you so much for sharing💗 it really helps me.
Great to see you back on here 😊😊
You’re stunning!!! 😍😍😍 love these kinds of videos, and thanks for making me feel a little less alone this holiday season. My worst symptom atm with the prednisone is cycling through like seventeen emotions in the span of five minutes 😂it’s also triggering migraines which has never happened to me before? Might also just be from the flare, who knows, because my symptoms aren’t gone either, especially the dryness and fatigue actually. I’ve been using aquaphor for my lips btw and it’s doing alright! There’s a lip balm they make for when you’re on the go too. It’s not perfect but it doesn’t have that rebound dryness chapstick does and feels pretty similar when you first put it on. Sending all my love and strength ❤️❤️❤️
Thanks Julia! I may have to give Aquafor a try as I haven't tried it yet. I just think of all the lip balm I have to be ingesting for how much I have to apply lol. I feel you on the emotions, I have definitely had my moments this time around.
Great to see you…I have taken prednisone in bouts…and I do feel the side effects…and round face.
But it does bring things under control so it is worth it.
I have primary Sjogrens and weakened immune system from colorectal cancer chemo
I totally get doing your makeup. It is my thing. I love it!
Hope you have a wonderful holiday!
Another little Lupus warrior here. Thank you so much for your channel. I’m in the uk and your videos have really helped me understand what’s going on. It seems much more understood where you are. It can be very much overlooked in the uk. With reference to the sjogrens I use Elizabeth Arden protective lip balm that really helps me. For my dry eyes I uses product called Xailin gel. I’ve also had my eyes plugged to keep as much moisture in them as possible. Also at night/ day there is a melt called Ora coat xylimelt from Amazon. There designed to adhere to your gum or cheek and take four hours to dissolve. There really helpful. Keep up all your good work. Your looking really well and thank you again. Enjoy your Christmas holiday and stay safe.
Thank you for sharing what you use. I am going to check those products out but I do use Xylimelts and can't sleep without them! They are the best. I am glad my channel has helped and I hope you have a wonderful holiday as well!
Looking beautiful as usual. I use the richest rosehip oil (orange coloured) I can get and Nivea in the blue tin over the top. Merry Christmas and thank you for your videos 💖
Thank you for sharing! Merry Christmas to you as well!
Happy holidays beautiful
Thank you, happy holidays to you as well!
Did you have any success with the Goldner diet?
I haven’t been sick since right before covid (actually think it may have been covid) which triggered a bad lupus flare. Haven’t flared since then either. I used to get some kind of cold or virus like twice a year before all of this so I really dread the day I get a cold lol
Sending you good thoughts. Aquafor or Vaseline is your best bet for your lips. It just sits on top of your skin and doesn’t sink in, so it locks in moisture. Hope that makes sense.
Thank you for sharing. I definitely have felt that the Vaseline has been helping the most.
Do you get the butterfly rash? If so, how do keep it away? You look great!
Always enjoy your videos. Even though I'm older, I like to hear others experiences with lupus. I am curious how much prednisone you are on and at what milligram you get the moonface in your case. I have been on IV Benlysta infusions for several months now and they definitely help with my energy but haven't noticed any change in the joint pain symptoms yet. Wishing you the best.
I am currently on 15mg-10mg, alternating each day. My face swelling is starting to go down at this amount but I was on 40mg for a few weeks.
@@HealWithSamantha Thanks. Yes 40mg is a lot. I would definitely have the shaky hands. I5mg is still quite a bit. I hope you are able to taper down soon. I am down to 3mg/day.
I was on prednisone for two years on high to low doses for Crohn's and colitis. Now I am down to 20mg from 60mg. I am very sick from the side effects and withdrawing possible. Shaky, and dizzy and migrains. Is that normal? Also severe weight gain and night sweats with waking up 6 times a night. 😭 Thanks for sharing.
Samantha, look for herpecin L. Its a lip balm that moisturizes chapped dry lips and prevents or treats cold sores.It doesn't have a weird taste or smell. It comes in chapstick form. Its a nice balm to have with you at all times. I keep one at my bedside, in my purse and always in my beach bag. It also has spf. Its awesome for us lupies. I cannot use chapstick. It literally makes my lips worse. Look for it. Its Herpecin L.
Try Nivea on your lips. It is over by the lip balm at Walgreens or you can find it on Amazon. I have to keep it on all the time but it is the only thing that cuts the super dry Sjogren’s lips.
Thank you for sharing! I have yet to give Nivea a try.
You are so beautiful princess god bless you sweetheart nice to hear from you bless you
Aquaphor as a lip balm is good, but not the one for lips (it’s not as good). I get the travel size tube of the regular Aquaphor for my purse!
Thank you for sharing, this seems to be a good one based on the recommendations!
Hi Samantha 👋
Hi Tory!
Have you ever had an ultrasound or ct scan done on your neck due to Sjogren's? I just had a US done because of difficulty swallowing, swollen right parotid gland and submandibular. Result came back showing multiple cysts on thyroid and a 1.2 cm cyst I think just under the ear. Do you know anything about these symptoms?
I believe I had an ultrasound on my thyroid at 14 when I was being diagnosed. I did not have sjogrens back then though. Sorry you had some cysts show up. I may have to look into revisiting that because of how swollen my glands can get.
@@HealWithSamantha ya I would on occasion. I didn't know I had cysts on thyroid
but how I got to the point of seeing my primary was because of tenderness in bottom right jaw and it kept progressing to the cheek along with painful swallowing and ear pain
I go in next week for CT scan.
Hi. Have you try rituximab infusions? Its the only med that was able to help me with refractary hemolytic anemia. Maybe you could ask your doctors. Hope you are feeling better!
I have not yet. Luckily it seems the prednisone is helping this time around but if not I will be giving rituximab a try.
@@HealWithSamantha I'm glad to hear that prednisone is working for you! Hope you keep getting better. Hugs from argentina 😘
I have ra and Sjogrens . Any ways I got Covid on December 3. It was the worst pain and headaches I have ever had, for two weeks. I am still trying to recover. I had to stop taking all my medication.
i hate my basketball face
@@luizquiz1 Oh no. Sorry to hear that. If you don't mind answering, were you vaccinated? I hope you continue to recover and start feeling better soon!
@@HealWithSamantha i was not vaccinated and i regret it. in 90 days i plan on getting vaccinated in 90 days.
Hi Samantha. What is your diet know? Are you still know vegan? Send love and a lot o health!!
Overall yes but I did have some items with dairy in the past few months.