Steroids part 3: 3mg

I have been on the steroids for about two months. I started with 9mg, went down to 6mg about a month ago. That was the worst one so far. Now last week I went down to 3mg. I have been on it for several days, and I will be on it for only a week and then stop. I was meant to lower myself on this earlier, but it's not recommended to lower dose if you have a cold and I ended up having quite bad one. In fact so bad, that I had to go back on the 9mg dose for some days to help my body combat it.

Being on the lower dose, I have noticed a few things again. My acne is now almost gone. I still have a few red spots, but they look like to be healing rather than angry ones they used to be. Also I haven't gotten new ones and I can actually see my proper skin behind them!
I ended up getting quite bad moon face with all this. It just means that my face swell up quite badly looking like the moon man. With every decrease, it has been going down considerably. I still have moon face but it's a lot better now than it was. I can see some contours of my cheeks now!
I feel more tired again. Last time worst lasted about a week. This time it should be easier, since my body is producing more cortisols. I haven't been exhausted without a reason. I get tired, but more manageable tired than the exhaustion. I have had a few instances of needing to sleep half a day, but I put that down as having very aggressive cold. 

I think one of the worst things of this whole experience is that I felt normal, like myself while I was on the highest dose, and that I can barely recognise myself in the mirror. With my face being like a basketball with roundness and with the worst acne I can imagine, it's not easy. You can deal with changes like that better when they happen slowly and you have time to adjust, but with steroids, they happened within one week.
Also my blood sugars are slightly coming down and they are somewhat easier to control. They are still higher and I still need a lot more insulin than I used to, but it's more manageable. I really do hope that when I stop taking them, my face will go back to normal as would my blood sugars. Good thing with all this was that my eye check happened to be over a month after starting steroids, and I did not get any steroid damage to my eyes. It can happen very quickly! It often doesn't go away when stopping. It will slow down and possibly stop getting worse, but too often, it doesn't disappear on it's own.

At least now I know what to expect when they start this again. My doctors seem quite confident I have autoimmune hepatitis, so they will put me back on when my ALT starts going back up after this treatment.

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.

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.

ADHD and Sleeping

I haven't written for a while. My muse hasn't given me any ideas until today. I had hard time falling asleep and even harder waking up. It's normal when I'm not taking my stimulants. I toss and turn during the night, because my brain won't shut off. It just wants to keep thinking stuff. Even though I'm tired, I just won't be able to fall asleep. And it doesn't help, that ADHD brain generally tends to work best during the evening and night. A lot of ADHD people tend to be night owls. The brain picks up speed during the day. Excercise helps. So nights can be hard. I put my mind into a calm place for me, and keep it there, but it's still very difficult to fall asleep. It's a bit easier if I've gone to the gym or otherwise I've exhausted myself physically. Also I don't sleep as deeply as with stimulants.

And the other thing, waking up. Remember me saying about the brain picking up speed couple of sentence ago? Yeah, it doesn't help the mornings! When I'm on stimulants, I can wake up pretty alert. Without them, I keep pressing snooze button as long as I can. I'm just too tired. Amount of sleep doesn't matter one bit. It's as difficult after 6 or 9 hours of sleep. It gets a bit easier after coffee or other caffenated drink. Without them, mornings can be almost impossible. I have a rule, that my mom is not allowed to talk to me before some form of stimulant, coffee or medication. Normally people understand to give me space before badgering me. My mom doesn't. That's why I've given her the rule not to talk to me in person or on phone before I've had my breakfast and I give the ok. I'm extrovert and happy and patient person normally, except when I'm not on my stimulants and before coffee. I need to wake up first properly! After my coffee, I'm myself again.

And off the topic information: I need to take breaks from stimulants every once in a while. I had a talk with my doctor and stimulants can raise cortisol-levels in some people. Me having so many other health issues, it's doing that with me. I have to take couple days off every month and two breaks a year, where I don't take them for week or more. Symptoms for me are: difficulty falling asleep and staying asleep and anxiety.

Me and Weird Experiences with ADHD

I had to take off a week from ADHD meds. I was feeling a bit weird. I get like this when I have an infection and I thought I had something, but my blood test came normal. I did have slight cold but not bad enough for this kind of reaction. But it was an experience! I definitely noticed the difference. Doing normal stuff took so much more time than with meds. Preparing dinner was a nightmare! I would constantly forget things, go back and forth between kitchen, computer and forgetting the timer. Forgetting to put right things in right places at the right times. I don't think I used ANY seasoning on my food! I forgot half the ingredients in the store. Using lists never helped me since I kept forgetting to do the list, take the list with me or check it. The chaos in my life and head was a lot worse. I like a bit of chaos, but now with the meds I've grown used to less of it.

Another thing: I don't count any of my health issues as bad things or curses. I know many people feel even having one of these is horrible. Especially with ADHD. So many feel that it's a curse. I don't know if it's how I was raised or my own personality, but I don't think it as a bad thing, nor a good thing. It just is. It gives and takes like anything in life. Nothing is perfect but the attitude towards everything and anything is the thing that matters the most. There are days when I curse having diabetes or hypothyroidism or ADHD, but those are just bad days and they go away on their own. Then there will be a good days! I've had diabetes so long that I don't really actively think about it anymore. Most of the processes are automatic, like counting carbs and correcting for them, taking insulin, and staying consious on how I feel. I've had it so long I can recognise signs, ok now I*ve got high or low blood sugar. And I can have some fun with it. One of the funniest things for me is BS. It's short for blood sugar. I think getting diabetes at such young age really affected how I think about health malfunctions. My body hasn't worked like most people's since I was 8. So getting different diagnoses isn't too shocking for me. I get the initial shock yes, but after that it's just, ok I've got this, lets go back to normal life! I'm glad I'm like this. It makes my life so much easier! I do worry about some normal stuff, but I rarely get hang up on them. I refuse to let myself get that way. Life is very stressfull as it is, I don't need to create more stress. So much of that stress is created by the person. I can choose to let it go on, or think and worry about it. I'm not perfect in that aspect. There are certain things that I can't get over just like that, especially things that involve other people or waiting. I'm hopeless at waiting! And I always listen to people who have problems, but my patience runs out when they come to me about the same problem several times a week expecting me to fix it, when it's their thing. I'm their friend, I offer advice and any help I can give, but fixing big issues is their responsibility. Unfortunately there are people like this..

I got bit off track again! What attention problem?

side-effects

Ok lets try again!! I can't work the blogger with too much grace since I don't know how to undo the weird colour behind the text

So side-effects of Concerta. It doesn't work well with anxiety. I had to stop taking it for two days before the opening night of the play, since I was too nervous. Then started it again with hope I wouldn't get the starting side-effects. Which are panic attacks. They come out of nowhere and go away about as quickly as they come. I just had three panic attacks in one hour and then just stopped. Although green tea might have had something to do with it. I don't want caffeine with the drug since they have similar effects on the body. I was just standing in the queu for cashier's and it just started. I wasn't doing anything to trigger it and I was just listening to music on my mp3 player. ADHD kicking in again, I wrote mp5 player.. I wonder what that would be, you can't really play mp5... Anyway back to where I was. I knew what it was so I just waited for my turn and kept coughing. I don't know why but it's what I always do when I get panic attack. By the time I got all my stuff in my bag it was all over! well the first one was over.. When I got back home, I got two more. Then nothing. I feel a bit tired after all those but mentally ok. I know what causes them so they aren't that scary. It's a bit scary when they come out of nowhere. But knowing what they are helps! and remembering to breath and not get more anxious!
 Tomorrow will be complitely different thank goodness!! Only worry tomorrow is that I remember all my lines and don't lose my voice overnight. I can barely talk after yesterday. I have to yell in the play and with a cold... Good thing is that Concerta really helping with acting. I can focus more on being on the stage. It's easier to remember lines, where to be, how I am related to audience, what I'm doing, what to feel. On a normal day, it's really exhausting for me. Too much going on. And with all that trying to keep focused on the right things and not get distracted by others. AND we're doing comedy so the stuff other's do is HILARIOUS!! I have to keep poker face through the whole thing and it's so much easier with this!! I'm not saying it's a miracle worker but for right people it makes life more.. I don't want to say easier but more  manageable maybe? Life isn't easy but it doesn't need to be too difficult. If there are things to make it more manageable, I'm all for it!!