Hi so i just wanted to do a video about anxieties related to medication for dermatomyositis obviously you may have anxieties for medication whatever disease or condition that you have but for me it’s the amount of myositis so the reason i’m making the video is because recently my consultant has told me that i have to go back on a drug that i was on way back at the
Beginning when i first got diagnosed uh mycophenolate also known as cellcept so this is like another transplant drug people get it to stop their body reject and transplant organs that’s been transplanted so when you first when i first got diagnosed with dermatomyositis the first thing they do is give you steroids because it’s an inflammation going on in the body
They try and get that down straight away so steroids is the way to do that and you have to stay on these steroids for quite a while but to begin with they put you on a very high dose so to start with amazon 40 milligrams every day uh this was for quite a while and then it went down to 20 milligrams for another while 2015 down to 12.5 don’t need 10 7.5 i’m currently
At 5 milligrams but to get there i also had to use other medications so because they’re my site is an is an autoimmune conditioner so basically the body is attacking itself you have to take medications that stop that happening so way back at the beginning i was given the steroids so prednis alone but i was also given microphenolate so make a family yeah these aren’t
My new ones yet but here’s some that i’ve got left over so i had to take these in the morning and at night and the annoying thing about micah finally is and the more when you take it in the morning you have to take it whenever before you eat and then your second one you have to take two hours after you eat so it has to be on an empty stomach which is a bit of a
Pain things like that just really i can’t be bothered with but obviously it’s to make you feel better so this didn’t really make me feel better to be honest and taken this strength of drug always just makes you feel really iffy and horrible and at one point while taking these i almost passed out on the motorway when i was driving so luckily my daughter was in the
Car and she was learning to drive at the time so we pulled off the motorway and she took over um with her little plates on but that was a very scary time i also remembered having nightmares of the night to the point where i bought myself a little nightlight a little kid’s nightlight because when you wake up from a nightmare it’s just almost that sinister feeling
And it was horrible and it was just night after night so i bought myself nice little colored lights to try and cheer me up i also got headaches i get headaches anyway but i think that made it worse i felt nauseous it just didn’t feel right walking around i just didn’t feel right at all but that was stopped because a complication of dermatomycius interstitial
Lung disease which i’ve got and my lung disease progressed while taking mycophenolate so at the same time i started receiving ritoxamab infusions which is you know you go to hospital it’s a bit like chemo some people call it chemo it’s way up there with chemo but you go and you’re basically getting this stuff put in your inner drip in your body for about four to
Six hours so you get that and then two weeks later you go back and get it again and then that’s perhaps every six months so that made a huge difference and i think i had that three lots that made a big difference and then i had a new consultant who instead of the microphone elite decided to put me on tacrolimus or program which is another organ you know like
Transplant drugs so i’ve been doing really well on the tackle imus we stopped the rituximatum infusions about a year ago and us to continue to do well um the chocolate imus had its own side effects where it would make me shake constantly like my hands would constantly be shaken uh my little nephew even asked that let’s see why is your hand shaking all the time
But it was constantly so you’d constantly feel you know you just feel different you don’t feel your normal self when you’re on all these heavy meds but that was working that was keeping the lung disease under control it’s kind of keeping my condition under control but my body was not happy with it so my kidney my kidney function went really dangerously low my
Liver levels have always been off but they’ve been affected at my diabetes i’ve got diabetes um i’d got diabetes steroids and just diabetes but the tacrolyme is just it went off the scale like i could barely see it some some points um it was terrifying uh and my bloods were just constantly high the minute i’m not joking the minute i came off the tacoma my blood
Sugars came right back down so they were used to be sitting it consistently at 30 and they came right down in fact i had a hypo two days after stopping this echolar mass and that was the first hypo i’d ever had so i’ve had consistent high pose since then but things are starting to level out again um i’ve kind of been moderate in my bloods myself and taking my set
Reduced my medication myself as i see fit and at the moment i am not taking any diabetes meds that may change next week but when i get my period i’ve noticed that my blood drop so i don’t take any medication while i’ve got my periods and for the past while they have been consistently leveled they’ve been within range so i just keep a check monitor my own bloods
To test my blood four times a day so that’s good but my consultant rang last week to see that he wants to try me on micah finally again because he thinks that maybe by lung disease progressed through it last time because maybe it just wasn’t ready to settle at the acute stages of the disease so he wants to try me on my family again with the hope of getting me
Off the steroids and to stop the disease you know to keep the disease under control because we don’t want it flattening up because i recently had a chest infection and that kind of threw me a bit so he can’t really lower the steroids as is and when you lower steroids below five it’s you know it’s not pleasant even if i forget to take one one day it’s not pleasant
Uh it’s like withdrawn from i can only imagine withdrawn from heroin uh the sweats the shakes it’s horrible so i have to now take these make a family again and i’m really not looking forward to it i am currently trying to finish my phd i’ve got to have that i’ve made in december and i really don’t want to be taking anything that’s going to make me feel horrible
Again and i don’t want to be lying in bed feeling sick and feeling shaky or feeling like i want to pass out and i’m driving i need to be feeling normal it’s nice to not have these drugs pumping through my system at the minute apart from the steroids but i know i’ve got to or the disease could flood up and i could be back at square one so yeah i just wanted to
Express how anxious i’m feeling about starting these drugs again and the whole eaten you know having to take them and eat at different times that just sounds like hard work to me but yeah these are some of the medications that you can take for dermatomyositis and other conditions i’m sure um but not something i’m looking forward to
Transcribed from video
Medication Anxiety with Dermatomyositis | Mycophenolate/ Cellcept By Spoonie Love
