Nephrotic Syndrome | Relapsing At 5mg Prednisolone 🤷🏻♀️ Trying To Stay Positive & The Next Steps
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- Опубликовано: 12 сен 2024
- Hi everyone, not really a video I was expecting but I guess that's the beauty of living with kidney disease! You never know what's around the corner! My emotions are pretty much all over the shot in this video but in the meantime, I'm calm :)
Thanks for all your support so far I really appreciate your kindness!
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We live in Mississippi USA. My 6 year old daughter has had Nephrotic syndrome in 2018. Shes going need her 1st round of Rituximab infusion in July!! We Hanging in there! Thank you for putting your journey out here!! Your really helping this momma!!
Never a easy feeling!! I hope you feel more yourself soon. Don’t forget the community you have created, we are all here for you my love ❤️❤️❤️
thank you so much for your kind words I really do appreciate your support! thank you! ❤️
Hug hug, I am sorry to hear that, hope you recover and get that into negative, it will go away, you can do this!
thank you so much! i hope so too! 💪
Had some success with my son who had constant remissions that sabotaged his schooling.. I adapted the JADAM natural farming recipe for Oriental Nutrient, that include fermenting licorice root, Ginger, Garlic, Cinnamon and Angelica and added the equal size part of fermented Astrulugus root, and Golden Rod... With the onset of the disease I had a dream of files dropping from the hospital roof tangled in plant roots... the files had some sort of fly in it... When my Son's remissions became more controlled I had another dream of a fly in an intestine... that seems to have stalled or something.. The dreams are contrary to what I understand and what logically make sense, but I had them anyway. Praise Allah!! My son is still on his meds... but his relapses had not interfered as much for the past year and his recovery was more swift and managable.
Iam sorry this happening dear ,sending hugs and prayers.my son had rituximab after trying tac and MMF. He had it last December.but he is still tacrolimus as his doctor said not to stop now things are more stable. He just had a cold and +1 protein for three days.but reached negative on his own without steroids.its first time this happened that he needn’t take steroids.so fingers crossed 🤞 rituximab continue to work . Good luck xx
thank you for your kind words! I’m glad things are more stable for your son! All the best to your son and I hope it was a little blip in the path!
hey, i've watched all of your videos about prednisolone and can i just appreciate how courageous your are. i was put on 60mg in the beginning of Jan and i am currently on 20 mg with azaron 50 as well. i really am tensed about my moon face, its like i havent looked at myself in the mirror for two straight. will that go away as soon as im off prednisolone?
hope you surgery goes well :)
hey! aaah 60mg of prednisolone isn’t very nice for anybody to cope with! I totally understand what you mean about moonface (unfortunately it gets to me some days too!). From experience, I know it took a good year for my moon face to completely go away but I was also extremely active in that year as I was part of a very intense professional musical theatre show so exercised a lot once I was fully off prednisolone. Everyone is different so I can’t say when yours will go away, but don’t be frustrated and as hard as it is try and think about the pros of the medication rather than be hung up on the moon face ❤️ all best
Hey i also have nephrotic syndrome just wanted to ask did Rituximab worked for you?
High jasmine have you had any more relapses with you nephrotic syndrome minimal change?
My daughter also relapsed last January 11th then rediagnosed as steroid dependent.We might have a talk on her pedia neph for 2nd line meds treatment 😞 Hugs and Kisses Jasmine!BTW I really like your pasta recipe on Instagram ❤
Sorry to hear that! Don’t worry, my second line agent actually got me into remission for a very long time until my recent relapse. All the best to you and your daughter 🙏 oh thank you!
@@JasminesJourney I will pray for your speedy recovery ❤
I am steroid resistant I had 4 does of rituximab and now again I am having two doses of rituximab
thank you for sharing! very interesting, I hope you find the Rituximab okay and get into a long remission!
I am on cyclosporine and steriods..from last 5 days...
my 11yrs son was nephroctic sydrome last 4 months
Hi im suffering last 2yr. I had 4time rep
Relapse steroid.one days ago i check my urine then its again relapse i see. Im so disappointed n upset i dont know wht should i do to cure the problem.
Hi I just came back from the hospital and the protien has gone up for me too💔 um what kind of steroids are you taking?
You will be fine
☺️
Hey Jasmine, how much water do you drink when relapsed and how do you manage that thirst?
hello! thanks for your question! personally I don’t feel thirsty during relapses. Usually I still drink a fair bit of water as I hate being dehydrated. When in remission I’ll drink the average 2L but during relapses I am a bit more conscious that I’m not urinating as much so will try to only drink 1L-1.2L, however it’s still best to ask for professional advice too as everyone responds differently to different amounts 😊
currently going through this too! 50mg of prednisolone for me and the rest! mood swings are biiiiiig
😂 had Rituximab today
hope it went well!!!