Steroid trial part 2

I have come down from 9mg of budesonide to 6mg. The tablets are 3mg size so the decrease happens in 3mg intervals.

So far, it hasn't been easy. I have been taking the smaller dose for a week, and all the energy I got from the 9mg, has left. I felt better than I have in years. Even before I had liver issues. I have a feeling that my low energy levels have more to do with cortisol levels than liver. My liver functions beautifully, it's just being destroyed for what ever reason.
So as to what's been going on since starting lower dose. So when I was on bigger dose, I had the classic signs like moon face, acne, high energy levels. My face actually started to change in a day after the smaller dose! It looks now a lot more normal than it did. My acne is slowly clearing up as well. My cheeks and whole side of the face down to mid neck was covered in red spots. Since starting the lower dose, I haven't gotten any new spots and the older ones seem to be clearing up slowly. These are the nice effects. As for my energy levels, I have no energy. I seem to have gone back to my normal energy level. I had stressful week and worked three days and I needed three naps during the weekend to get some energy. I still need about 8-9h during the night, plus many naps. Hopefully by tomorrow, I will be able to work again. This is classic problem with low cortisols. There is still some hope that longer I'm on the lower dose, my body might realise it needs to start producing more of them. Problem is that doctors can't do any tests on cortisol levels, especially how my body produces them until I've been steroid free for several months. I am on the one that should effect less overall cortisols, but it doesn't mean there isn't any effect on them.
Also my insulin levels are still a bit mad. I have managed to go down 4 units of background insulin a day, which is less than 5%..

Also my liver specialists seems somewhat mental. They have somewhat tendency to chance their minds on moments notice. Every singe time I visit their office, it's different doctor and different opinion of what I have. Last visit came out of the blue. I was told I won't get any appointments until my steroid trial is completely over. Then I was called in couple weeks after. Apparently this one seemed to think I have been confirmed to have AIH and wanted to see my levels at 6mg to see if it's my dose.. No one told me about this. And as for the reading I've done, if they decide I have AIH by the end of this trial (after being steroid free for 2 months), they will restart steroids and then figure out my ideal dose. According to what I have learnt, then they will keep me there until my levels stabilise and then start moving onto more permanent immunosuppressant, most likely azathioprine. What I have learnt, be your own expert. Read, remember all the letters and information about your case. I had to remind the doctor that the reason why I am doing the steroid test in the first place is because my biopsy was indicative for medication damage, not AIH. Be your own expert. The doctors don't have time to read your full file. You might need to remind them of the important bits.

Also, find something that relaxes you. For me it's crocheting. I often crochet while waiting for the appointments or blood tests. Read, write, draw, walk in the park. Just keep active, do what ever you can to keep sane. The process of diagnosis is longer than  you want and it's stressful. Just take care of your own mental wellbeing!

Off My Meds!!

I'm returning back to ADHD. Almost exactly a year ago, I was told I have liver damage. They didn't know what caused it (it's still unclear), and my doctors took me off Concerta immediately. One of the listed side effects is liver damage. From what I have read, it's very rare to happen after years of taking it, it's more likely to happen just after starting. Normally it settles down after being off Concerta for few months.

But away from my liver. So they took me off my stimulants. I was lucky and unlucky that at this time, I left my job. Lucky that I didn't need the stimulants for work, unlucky that well finding jobs that I can do without stimulants isn't really possible. I wouldn't have been able to continue my work without them anyway.
So since then, I have needed to manage all my symptoms. I have gotten new symptoms from all the stress from my liver condition being diagnosed. I can manage home life somewhat ok without my stimulants. My home is messy, things don't get done quickly and I often forget, well everything. But I have food, I do clean when I remember. I keep active since I know it keeps my symptoms away a bit. But trying to find a job is impossible. I cannot focus enough on writing applications. I forget what I'm supposed to write, and I remember all the good stuff, after I've posted my application. My applications are mess anyway. I am not good writing them on a good day, it's impossible on a bad day. Meaning without my medication. I know what I am good at, and what I am capable and I know for certain that I am not capable of London standard without my medication. I am good when I am on stimulants, but without them, my head is full of chaos. With the stress, I am drowning in it. And it's how it is. There is nothing I can do about it. I eat healthy, so I get energy throughout the day steadily. I exercise as much I can since it helps with stabilising my brain. I try everything to manage my stress and try to focus on other things. I do crocheting, which for me is best form of mindfulness. Learning new techniques helps to keep my mind occupied. But I don't have much control of anything anymore, least of all my own brain.

I did manage to get a part time job doing something I have done before, but I notice that I am not as good at it as I used to be. I miss stuff, I make mistakes and at the end of the day I am often quite frustrated with myself. But at least I get enough money to survive to the next day. Which is all I can hope at this point.

And the reason why I am not on medication at the moment is that my GP has requested medication review from mental health team and I am waiting to hear from them. I expect I will continue to wait another several months, before I hear anything from them. The waiting list is very long. I expect I will end up waiting for over a year to get an appointment, and I was referred during the summer. Hopefully I will have my appointment year from now! Until then, I just have to hope I manage to get enough money to get food and some extra so I can continue crocheting to keep sane!!

Steroid trial

I am in the middle of my steroid trial. I was given budesonide to see how my liver reacts to it. So far, my inflammation in my liver has gone down considerable amount and my lab work are closest to normal than they have been for a year.

So they started me on steroids about three weeks ago. Budesonide is weird one, because it's not meant to go into the blood stream much. It is meant to fix the intestines and liver. With proper dose, it shouldn't go past liver. If you take too much, or your liver isn't good at metabolising it, it will leach into blood stream. With my case, it has gotten into my blood stream because I am taking massive dose of it.

First day, I took it about midday. Never doing that again! I didn't fall asleep properly until about 4am. Not fun! Especially since I woke up couple of hours later to go to work. Second dose, I took more appropriate time. Steroids are meant to be taken as soon as you wake up. Mine are to be taken 30-60 minutes before breakfast. Second day, I felt almost normal! I couldn't remember last time I felt so good! I had energy, I didn't tire as easily. My blood sugars were out of control, but otherwise I felt good for someone who slept couple of hours.
Since then, my energy levels have gotten better. Weirdly enough, my heart rate and blood pressure have gotten a lot lower. My resting heart rate has come down from 70s to low 60s. Blood pressure has been normal first time since last year. This shouldn't be possible with steroids, but apparently it is with me! My blood sugars are somewhat out of control. I had decided on the first day that I will not worry about how much insulin I'm taking and just increasing them as I need to. It seemed to help not to worry about doubling my doses. It's very scary for a diabetic.
As I have continued to take them, I have noticed other symptoms as well. My acne is back.. I wasn't looking forward to that. My exercise induced asthma is gone. I can really easily exercise now. I hadn't realised how bad it had been. I haven't had an inhaler for a while now since I didn't think I needed it. I am reconsidering that now.. And I still don't sleep too well. I don't need as much sleep as I have few months ago, but I keep waking up during the night.

Now I am starting the scary bit, bringing down the doses. I have been on 9mg which is the highest safe dose for me. Next will be 6mg. I am somewhat worried about my energy levels and weaning off from it. I am more convinced than before, that I have some form of problem with my cortisols. I am hoping that my cortisols have taken this as a holiday and will keep working when I lower my doses. Going from 6mg to 3 should be easier than the first one. My body will already have figured out that it't not getting enough steroids outside and will hopefully compensate.

Life Continues

Sometimes I wish time would stop so I could catch my breath. Getting diagnosed with something new is terrifying process. I don't know if the process being so slow for me is a good or a bad thing. I have more time to research what I might have. Research is one of my coping mechanism. The more I know, the less terrifying this new boogie man is. I have learnt to trust my process. This is not my first rodeo. Being diagnosed with three autoimmune diseases, ADHD and so much more, I know what to expect.

First part is the fear and never ending questions. What is this thing? Will it kill me? Will it affect my quality of life? How will it affect my life? What is the treatment?
At this point, my head will be full of fear, anxiety, anger, and questions. Taking control of the situation is only thing that helps me. First step is to figure out what questions I have. Then looking into what are the answers. I trust myself with google. I know where not to go, and initially to stay away from threads of people's experiences. Peer support is important, but it's not the first step for me. I can spent hours reading about what is happening in my body with this new condition.

After I have figured out what is going on, the despair and anger kicks in. Why me? What have I done to deserve all this? Easy answer, nothing. I was just very unlucky. I was born with genetics that hate me. Anger is part of acceptance. Anger is an emotion, and it has it's purpose. I try to figure out the reason, feel it and use it in a productive way. When you deal with it in a healthy manner, it will go away. If you dwell in it, it will take more energy than it gives.

At the moment, I seem to have hit apathy with my process. I am not officially diagnosed, so I cannot accept I have a new condition, but I am at the mercy of doctors and them doing another round of blood and other tests. I have no control over what is going on, so I just have to try to keep myself busy and not think too much until I have reason to. It's not easy. I have set up a new business. I crochet and try  to sell them. The fear of failure is very good distraction. I am trying to figure out all the ways I can market my shop. I will never make too much money out of my business, but few quid here and there would help. I work part time due to being so tired, so this helps. It keeps my mind active even when my body feels tired. It doesn't take too much effort, and it feels nice to create something pretty.

New challenges

A lot has happened since I last wrote on this one. I have moved to a different country. I have gotten so many new experience and challenges. I wanted to write about my next new journey.

Since I last wrote, I had gotten a new health problem. Until last November, I lived my life normal. I was working, taking my ADHD meds and living normal life. Well, as normal as life with ADHD ever is. I have type 1 diabetes and due to that I get yearly blood tests. These are routine. They always test my cholesterol, renal function and liver function. My ALT levels were high. Their range is up to 52, and mine was almost 300. Doctors continued to take more blood test to see if they would spontaneously go down, like they do sometimes. They didn't. In fact, they were getting higher. They took more tests and I was getting some odd readings. My liver function has never been compromised and my liver works fine. Something is just destroying it. They took me off Concerta, because it has a rare side effect of causing liver damage. They referred me forward to liver specialist. They took more tests, including MRI, fibroscan and biopsy. Now almost a year and long road of the doctor's going back and forth what is causing my liver issue, they are doing the last test. They believe I have something called autoimmune hepatitis. It's autoimmune condition, where the body attacks the liver cells. Only treatment for this is steroids and immunosuppressants. They first start you on the highest possible dose of steroids, budesonide in my case, and let the inflammation heal. You will be able to see improvement in blood results in just a few weeks. For me the last test, is to see if my liver values go down with these steroids.

I have several diagnosis, but none of them have been as difficult journey as this one. The doctor's keep going back and forward what I have, they haven't been able to do anything except see what happens. Now for better or worse, I have medication. It's a no win situation in my opinion. If it doesn't work, they don't know what I have. If my labs improve, it will settle that I have AIH. Which means, for the rest of my life, I will take immunosuppressants. Those drugs aren't entirely fun either. I won't be able to be in the sun, because my skin will get even more sensitive to the sun. My risk of melanoma and other cancers will increase. The side effects aren't fun. Steroid side effects include minor but annoying ones like weight gain and moon face (very round face) and major ones like osteoporosis. With others they include, aside from the sun and cancer, horrible nausea, loosing hair and having worse immune system. I know these medications will save my life, but it't not easy to accept that my quality of life will not improve in the future. The disease itself has symptoms, like tiredness, nausea, loosing weight, possibly even cirrhosis. I am lucky that so far, there has been no evidence of serious liver damage. Just that something is persistently attacking my liver. I think one of the biggest obstacles for me is to accept that I don't have energy anymore. Days of feeling like a healthy human being are over.

Hopefully I will remember (I haven't been on ADHD meds for almost a year now and symptoms are fully back with new ones) to write about my journey to new health issues and how to overcome the mental effects of this new problem.