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Cyclosporine And My Experience #nephroticsyndrome #minimalchangedisease

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This minister hi guys welcome back to another video today i’m gonna be talk to you guys about my experience of tapering off steroids and introducing cyclosporine that i got asked in one of my videos in the comment section why i’m on cyclosporine so i wanted to take today’s video to basically explain that around two years ago i experienced a second relapse and it

Was my second one a year since i’d got diagnosed and here my doctor had basically decided that steroids was not working and by that point we had to introduce something called a second-line agent so the second line agent was either cyclosporine or the other one i think it’s good sikes cyclists form id or something like that i probably really butchered that name

But that’s the other option but in the end we decided to go with cyclosporine because the other one apparently affects your fertility so i really did not want that from then on i think i was on about 15 or 20 milligrams of prednisolone and the plan was to introduce a cyclosporine and at the time i think i got put on a hundred and seventy five milligrams per day

And over the course of six months i then started tapering off steroids and then hopefully i would just be reliant on cyclosporine we were hoping that basically i would do really well on tapering off the steroids and introducing these cyclosporine into my system that i actually came off steroids completely last may and i do actually have a vlog of that day and it

Was honestly the best day ever because i got told that i no longer had to take steroids because obviously the cyclosporine had kicked in it was working and i had had blood stan i had my weight my blood pressure checked and everything seemed to be fine so that was two years ago and it’s now two years on i’m still on cyclosporine as you guys know so i got told

That i would be on cyclosporine for a minimum of two years now me filming this video today it has been two years and i don’t know what’s gonna happen next and i have pre filmed this video so i do have hospital appointments coming up so if anything changes obviously it will be posted on this youtube channel but for now i am taking 200 milligrams of cyclosporine

Per day now i don’t know when i’m gonna discontinue this medication obviously it has to be a slow process and i have to be weaned off the medication you can’t just suddenly stop the medication because you get a scream audio if you do that i know though that if this cyclosporine didn’t work then obviously there would be an alternative way to get into remission but

Honestly i can’t remember what my doctor said but at the time i was just praying that this sucks porn would work and obviously it has and it’s worked really well for me the main side effects that i have found from cyclosporine really there’s hardly been any so one thing is hair growth which i really do not mind at all everyone loves a bit of hair growth especially

After losing all of your hair from steroids i’m gonna try and find a photo of how my hair used to look about two or three years ago and oh my god it was dreadful it was so limp so lifeless and all because of steroid woo but since i’ve gone on cyclosporine i have got my hair back i don’t know whether i would have got my hair back if i wasn’t on the cyclosporine but

That’s something that i’ll never know obviously i’ve got very wavy hair but it’s made it very thick and i don’t know whether it’s made it more wavy i’m not sure another side effect that i found is my nails grown up there’s no tomorrow i cut my nails yesterday but these are my nails now and i’ve cut them yesterday i guarantee you by this time next week they’re gonna

Be really long again and then i guess it’s not a bad thing you were trying to grow your nails out but it can get really frustrating when you’ve literally just cut them another main thing to talk about with cyclosporine is your immunity cyclosporine is an immunosuppressant which basically means it wipes out your immune system completely because obviously with new

Products syndrome and with it being a autoimmune disease an autoimmune disease is when your immune system fights itself so in a sense it doesn’t work and what cyclosporine tries to do because it is an immunosuppressant it tries to suppress the immune system so that you don’t have one basically so i guess that kind of sucks but i mean if it makes you better in the

Long run then great i found if you do have to be really careful and i remember when i was living back in london at the moment obviously when i’m filming this we’re in lockdown so i am back at my dad’s flat but when i did live back in london last year i was at the train station and i was just walking with my boyfriend we have a nice chat he came to pick me up from

The station and a guy in front of me sneezed and because of the direction of the wind his he did not cover his face hey that is disgusting anyway and be cover your face and because of the direction of the wind his bacteria let’s call it flew backwards and obviously landed on me and my boyfriend now following this i got really poorly because obviously he has spread

His germs to me and my immune system was not there it was nowhere to be seen obviously because of cyclosporine and i got a really really bad cold which kind of sucked because i was auditioning at the time and i needed my voice i needed to be well and it just sucked then on the other hand my boyfriend was completely fine so i would say just take a little bit of care

When you are around poorly people so this is the box that it comes in and i have the new ural 102 milligram tablets but i need to take 200 milligrams so i take two of these per day two in the pack they come in these really long strips of about five is that five one two three yes five so what you can do is you can just tear it off and you will get one so what i

Do is i take one of these in the morning and you don’t need to eat it with food there’s nothing in the packet that says you need to eat it with anything but i just like to take it when i’ve had my breakfast so that i just remember and then to remember in the evening i will set myself an alarm at about nine half-past nine just to remind me to take it because to

Be honest sometimes i do forget so then obviously two of these equals 200 milligrams overall i’m not sure what’s gonna happen with my cyclosporine journey but i will try and document as much of it as i can on this channel because i know that other people over the same journey as me and it is really important to just talk about these things as well that’s it for

Today’s video if you enjoyed this video then please please please do not forget to subscribe to my channel and hit that notification bow so that you are notified every single time that i rode a video i’m also on instagram as jasmine’s journey where i regularly upload meal where i regularly upload what i’m eating that day and just overall positivity posts i hope to

See you guys next week and enjoy the rest of your day bye

Transcribed from video
Cyclosporine And My Experience #nephroticsyndrome #minimalchangedisease By Jasmine’s Journey