Nephrotic Syndrome | Everything I know so far

[@JPATCH677]

I was diagnosed when I was ten years old and it's been five years since and I recently went back to the hospital to get a checkup and my kidney consultant you haven't relapsed since 3 years which mean't he discharged me from the hospital but he said if you relapse just give a call again. Prednisone affected my body in many ways such as reduction in growth which made me smaller. My doctor said you'll grow out of it if you were diagnosed at a younger age but u can out grow older as well.

[@JasminesJourney]

J Patch wow I never knew that it can stop your growth if on it at a young age :) sorry to hear about your relapse I hope you make another speedy and long recovery!

[@booleh1844]

Thank you for making this video, I'm 16 years old and was diagnosed with nephrotic syndrome 3 years ago, and have been struggling with it since I'm currently taking 12 pills a day to help with my swelling in body, im on 60mg a day. Honestly it's scary so im happy you posted this video and that im not the only one who is going through this, not that I want people to go through this is it's just comforting that im not. So thank you for this video.

[@JasminesJourney]

Thank you so much for your advice! I’ll remember it! And thank you for sharing your story with me!

[@venusteuyandim]

You are an awesome person. When I feel lonely and hopeless with this situation I watch you and I become like “it is just me!”. Thank you for making these videos.

[@JasminesJourney]

Vu always remember you’re not alone! Although this may be a 1 in 50,000 disease, there are 7.6 billion people in the world this being 152,000 people with NS ... you’re never alone, stay strong and I am glad I can give you hope and confidence 🌟 keep shining!

[@chimichanga8608]

That’s exactly how I feel like I have matured , and yes I have appreciated life a lot more and just being more self aware. The struggle definitely makes you stronger when you do talk about it.

[@booleh1844]

It really makes you appreciate your body a lot more, we only have one chance so we gotta look after ourselves, hope you're doing better now.

[@milkychan1]

I absolutely love how you are doing these videos focused on your journey, experience, and perspective with Nephrotic Syndrome. I agree that there aren't many people talking about this disease and I'm glad you are adding to the videos out there that do talk about it. I remember growing up not knowing anyone else with this disease and not having any resources to look up or identify with. Your videos, I feel, will be so helpful and relieving to those who have this disease like myself. I am actually going through a relapse right now that was triggered by a cold/cough, and am dreading going back on steroids (3 years on remission) ... But your optimistic perspective is enlightening - being grateful for the drug at least existing. Thank you for that. You are wise beyond your years :). I dread taking Prednisone because it increases my appetite, makes me really anxious, gives me a moon-face, and more ... If you can, could you list the drugs you talk about in your videos in the description section? There are some I have never heard of and was never prescribed, like the diuretic you mentioned. I could continue this long post, but I will stop for now, haha. Please keep posting these videos! It is almost like we, as a group of people affected by this disease, are going through this together :).

[@JasminesJourney]

Alex C. Thank you so much for your amazingly lovely comment! Sorry to hear you’re relapsing but stay strong and I know you will get through it in no time at all! As with medication here is everything that I took when I would relapse and first got diagnose... 1. Prednisolone 45mg 2. Omeprazol 20mg (helps like the stomach/stops stomach ulcers) 3. Losarton 25mg (controls blood pressure) 4. Furosemide 20mg-40mg (water tablet) 5. Calcichew (1mg to help with bones) When relapse occurred for the 4th time in one year I added... 1. Cyclosporine neoral 100mg (50mg twice a day) 2. Cyclosporine now increased to 200mg (100mg twice a day) When in remission, what I’ve been taking since April 2018 1. Prednisolone 2mg 2. Losarton 25mg (controls blood pressure) 3. Cyclosporine x2 a day of 100mg I hope that was helpful and I will be sure to never give up making these videos an bring you all along on this positive journey with me God bless

[@milkychan1]

Thank you for your encouragement and sharing :). There are definitely things I haven't been prescribed before which I hope are not due to my doctor's lack of knowledge ... To give you an idea of my regimen, my medication primarily consists of: 1. Prednisone 60mg for 2 weeks, then 40mg for 4 weeks, then 40 every other other week, and then eventually taper down to 5mg every other day. 2. Omeprazole to prevent ulcers from large dosage of Prednisone. 3. Multivitamins Your list was definitely helpful. Thank you again!

[@pranjalimehta3653]

I was diagnosed with nephrotic syndrome this year in january and since then I have not been on steroids still , just one medicine is doing good but yes healthy eating and cutting down extra salt/ sodium is veryyy important ! I am 20 years of age too. This brings me bit hope of focusing well on my career too and not thinking why or how such thing happened in the place as doctors call it idiopathic disease.

[@ritudas8356]

Hi are you suffering from fsgs or mcd

[@reasonablyhappy]

Thank you for making these videos! You are so positive and uplifting!

[@JasminesJourney]

Lisa Barrett-Chan aah thanks so much!! Very kind of you to say! 💕

[@wubzbro]

I haven't been able to go into remission, my body just keeps spilling protein and the swelling just won't go down :(. I'm doing my best with everything but this has been the hardest 7 months of my life

[@JasminesJourney]

WubzBro 11 so sorry to hear this! I was unable to become stable on just prednisone an maybe it’s time to add another mediation to your plan soon? All the best

[@crislanemarielumacang6303]

Hello. im also a nephritic/nephrotic patients. and one thing helping me now is keto and intermittent fasting

[@najwa2939]

I don't hear about anyone having this but I have it and I hate it

[@JasminesJourney]

A lot of us live with this don’t worry you’re not alone!

[@venusteuyandim]

By the way I also have been diagnosed in 2016; but it was june and I am 20 too. You give me hope.

[@gold37158]

Amazing. Thank you so much

[@nonoygarotetv975]

I hate moon face huhu, i'm taking pred 16mg every other day my face getting bigger!😢

[@toxicflour833]

Im gon have albumin transfusion tomm and im fking scared

[@kayleelam6893]

I subbed!

[@gautamkrishna543]

im age 23. I had NS & i tappered my medicine(Prednisalone) and stop in March 2018. bt now also my urin is foamy. bt no edima is seen ... Do u know why??

[@ayanibrahim5092]

Why don't u see doctor bc to stop medication without doctor the problem come again

[@vivekthorat6865]

Hi

[@toxicflour833]

I need help my feet is swollen again is it ok? To a newly diagnosed patient to get the swollen back?

[@roja091986]

Hi my child has had her 4th relapse. Any tips on what kind of diet? We cut out the sodium. What else can we do to help her food intake?

[@toxicflour833]

My albumin turn to +1 from +4 but after 1 week until now i got small swollen body parts is that means im Going back to +4?

[@tammy96]

I think I may have this. What type of doctor diagnosed you? Did you just go to a general doctor or a specialist at first? thx

[@JasminesJourney]

Tammy Condra I went to my GP as my face was hella swollen for too long and they tested my pee and did bloods etc :) id go get it checked if you’re worried

[@nadinestajuana359]

lozarton or lozartan ?? is for hiblood pressure ryt?? I'm have also a neprotic syndrome .. and I have headache everyday .. wat I supposed to do?

[@JasminesJourney]

hi! i recently made a video about this topic! kzbin.info/www/bejne/m4WZamavfqd-oNU

[@Anu20810]

What is the cause of Nephrotic syndrome??

[@JasminesJourney]

hi there i recently made a video on this topic! kzbin.info/www/bejne/nXKacqCbYqhmiac

[@manishkadariya9115]

i'm also 20 yrs old now .i was suffered froom mcd 3 months agoo

[@toxicflour833]

Hi i am 3 weeks turning 4 newly diagnosed neph is it ok to a neph patient to get their feet swollen again? Or is it normal to people who have this?

[@poulmeta637]

Toxic Flour my feet started swollen when I eat to much salty also I don’t usually pee too.

[@toxicflour833]

@@poulmeta637 im at the hospital rn and my albumin turn lower

[@poulmeta637]

Toxic Flour did your doctor asked u to take albumin serum?

[@toxicflour833]

@@poulmeta637 nooo i was wrong my doctor said i got swollen feet again due to abscess but i am fine he said gooosh i thought something happened to my kidney again

[@alief7266]

Can i ask how about ur condition now

[@JasminesJourney]

Alif Zunisa hi! My control has now been under control or in remission as they say for nearly a year now. I am on 2mg steroids and 200mg cyclosporin and 25mg Losarton :)

[@alief7266]

@@JasminesJourney and you feel better after that?

[@JasminesJourney]

@@alief7266 hi! please find my most recent health update here! kzbin.info/www/bejne/m4WZamavfqd-oNU