I am not typically a whiner but as I sit here at 3 AM this morning having been awaken after only 6 hours of good sleep with a sudden craving for food and to get out of bed, I figured what better quiet time then to discuss the biggest bane of my existence... steroids.
It is no secret that medical steroids cause a lot of problems with just about everyone that takes them. Therefore, I am really no exception to it I'm just tired of them already and need to vent about them a while. Might also give something for others that deal with these to relate to or warn those that may have them in the future.
A little background: I am NOT a medical doctor so anything I say here should be verified with you your own medical doctor. I am no expert on steroids just someone that has had the misfortune of being on two types during different periods of my life and is a little annoyed right now at the side effects caused from her latest 13 day and counting stint on them. (Don't get me wrong I'm happy to be on the 13 day stint of the particular one I'm on rather than one that I've been on in the past but Evil is Evil!!!)
Anyway, as this post moves along please forgive me if things don't seem in a logical way. It is a cross between the steroids, the issues I am having in my head anyway, and the fact roosters aren't even thinking of getting up yet.
So what do steroids do? They help/replace the bodies natural production of corti-steroid (typically produced by the adrenal glands) to help control swelling and inflammation. While there are several forms of medical steroids, I can on speak on my experience with two: Prednisone and Decadron.
My very first experience with Prednisone happened several years ago (6+) and for all intensive purposes was pretty good. After having fought a serious attack of bronchitis/reactive airways I was put on a 10 day dose. The only real side effects I noticed with this short of dose was general mind disorientation (I don't remember how I got to work that morning) and trouble falling asleep.
My second experience was with Decadron. Dec is a very strong steroid compared to Prednisone and uses a different formula. This is typically the first choice for those with brain swelling (such as what I get) and many forms of cancer. I went on Dec the first time following my first brain tumor resection in 2008. I was on it for a 6 week time with it gradually being tapered off. At the time, I wasn't 100% sure if all the side effects I was having were from the steroid, surgery, or the anesthesia but by the time it was over, I have no doubt that 95% of the things I discuss here were Decadron related.
I went through surgery with flying colors. I had very little if any pain, mentally I was sharp as a tack post op, and generally felt great. As the days post surgery went along, my mental sharpness fell drastically with each day to the point that some days I could barely put my words together (at the time I thought it was just my brain protesting its invasion). Then the joint weakness and pain started in. I would stand up and my knees would act like they were rubber. I couldn't get out of bed without assistance from my husband because of my rubbery joints. I was in horrible pain and had to take something than Tylenol for the first time since surgery. None of this was related to my head but to my body from something. By two or three weeks in, I could no longer climb stairs, my knees could just not lift me. I actually had one heck of a time getting in and out of most vehicles because I couldn't get up if it was a lower vehicle or climb up if it was higher. While this was a pain, it was only the tip of the iceberg and lasted for me for 2 months after I was finally off of the Dec for good.
Sleep was also an issue. Despite being exhausted from anything I did during the day, I would often spend hours laying in bed trying to sleep. I tried everything to get there. Most days I would just give up on a regular sleep routine and sleep when I could. This helped but at the same time I never got the sleep I probably needed. I guess one advantage of the steroid in relation to sleep was that when I did sleep it was a dead sleep. I don't think I remember having a dream again for at least 6 months after this. (Again something I thought was surgery related not steroid until I went on the Prednisone here again)
Moods were a killer on Decadron as well. I was very mild angered compared to some of my friends I've talked to and what they were like but I'm also a very mild angered person so I guess that's not so unusual. However, it was not unusual for me to be talking to you happy as can be, be totally sad 30 seconds later, and then unable to shut me up as I talked in circles. These were annoying... yes but concerning no. The one thing that happened to me on Dec that has made me vow to only go on it if it is the absolute last option is the manic moods I got into. I wasn't just moody but would daze and get (luckily only to myself) downright hostile. I remember more than once dropping to my knees (which is a bad thing to do when you can get off your knees) and begging God to just end it. I was doing very well physically and there really was no reason for me to feel this but I just wanted it over. This scared me a lot during this time and again I wondered if this was some horrible personality I was going to have to learn to live with since my surgery. However, after the steroids finally cleared my system, things improved until finally after six months or so, these episodes stopped.
I'm going to basically combine my current Prednisone experience with my prior Decadron experience as I talk about the other symptoms rather than repeat things. Weight gain is a huge issue for most people. It's typically not your "you eat to much now you are going to pay for it gain" it's the "gain 10 pounds for no reason and in places you wouldn't normally" gain. With Dec I gained 45 pounds before it was all said and done. This time I'm holding at 15 but it's still early.
My sense of touch and the tuning I have with my body is basically non-existent. My skin feels numb, I can't feel hot or cold, my taste buds are numb, and I can't feel how much pressure I put on anything so my poor hands take a beating when I don't realize I'm too close to something and I'm ripping skin off of my nail beds. My skin is also extremely dry on my hands, lips, and most of the rest of my body but my face is oily and getting an acne issue (which I only have problems with when on steroids). Even my muscles are always tense and I can't feel anything with them because of the desensitization of my body. My body pretty much takes over on its own when it comes to the most basic functions. Basically, if it's something it does naturally it has to try harder to alert me to it (I won't go into any more details than that).
One of the things that caught me off guard within just a few days was the change in my sense of taste. I could not touch anything that had tomato in it (stopped for a burger on the way home from the hospital and about gagged from the ketchup... Yuck), things like orange juice tasted like you had just brushed your teeth and then taken a drink of it (I love orange juice... still haven't figured out if it's a citrus thing of a tangy thing though because I can drink lemonade with no problems), soda tastes flat, and various other things that I normally don't like I can eat or vice versa. I also had a major craving for protein the entire time I was on them. Skip the potatoes give me the roast... no I didn't say a slice GIVE ME THE ROAST!!! LOL
Water retention is a big issue because the metabolism of sodium is slowed. Therefore, you try to stay on low salt but even then the water collects. It is not unusual for me to weigh myself in the morning and by early afternoon I've gained 10 pounds. I remember the first time this happened was on Dec and I was have a really cruddy feeling day. I had only been up a couple of hours (long enough to eat and do my dishes from breakfast) and went into the bathroom where I saw in the mirror that I suddenly looked 9 months pregnant from all the swelling in my stomach. This made my skin hurt bad (where's the desensitization when you need it?) and I kept thinking to myself that at least when this happens when you are pregnant you get something good out of it in the end. I later figured out that I gained 11 pounds in about 2 hours in fluid.
On the same or similar note be in weight gain or water that causes it, I often find it difficult to breathe when on the steroids. It makes my check feel like someone put a huge weight or heavy water filled sack on my chest. This is often very uncomfortable and it makes me labor to breathe especially with my history of reactive airways and bronchitis. I use a lot of my tricks from dealing with the other issues to get through this but as if everything else isn't enough? LOL
You also have moon face which is swelling in your face making it very round and moon like. I think it took well into 6 months for me finally to look normal again.
At around the time I was nearly done taking the Dec I started getting muscle cramps (charlie horses) in my calves. I had not had trouble with that since I was pregnant with my son. Steroids can mess with your electrolytes and was causing me a potassium deficiency. So, of course, out come the bananas and heat which would eventually help after you are put into tears a few times.
Energy is also an issue on steroids. They pump you up, make your heart race, make you raring to go even when your mind and body want to shut up and sleep. It's a strange feeling to be laying there without the energy to open your eyes but yet your body is running a marathon. Just another one of those joys of steroids.
I really want to believe that some of the issues I had with Decradon the first time could have been made more minimal if I had a doctor that could communicate or gave a darn. However, the NeuroSurgeon that did my first surgery was anything but that. I was never prepared for what the steroids would do at that point other than that they would probably make me moody (and this was thanks to being told by my tumor buddies not my doctor). I guess you chalk my first (and hopefully last) experience with Decradon up to learning. This time I have plenty of bananas in stock, am drinking juices to help keep my electrolytes up from the beginning instead of having to try to rebalance them, controlling my sodium and water intake, taking the proper medications to manage symptoms (gastro symptoms mostly) before they start, and maintaining just the right combination of moving and not to keep me limber and strong without overdoing it.
I do know that, while I feel like crud while on the Prednisone, my symptoms with both the more "tolerable to me" steroid and the lessons I've learned has at least made my current episode manageable. It always helps to have a good doctor that understands everyone reacts differently to medications and is able to help you get on what is comfortable and effective for you. I think there's a good chance that had he not agreed that if the Prednisone is taking enough of the pressure and swelling in my head down that I can function fairly normally and switched me to Decadron because that is the standard practice... I wouldn't be sitting here calmly typing or mentally preparing for this next surgery. I would be in a daze and technically unable to make my own medical decisions. (I still often wonder if I would have done radiation so readily after surgery if I had not been on the Decadron. I really don't think I was mentally competent enough at that stage to have been making that decision.)
Anyway, enough ranting and whining for now. I'm going to go grab another something to tie me over for a few hours then go back to bed.
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