My first Experience with Prednisone

Oh Prednisone! What a relationship I've had with it! I've had my auto-immune disease for nearly 20 years now (diagnosed at age 8). I've rarely had a year since then that I haven't needed Prednisone at some point. In my personal opinion, I feel like I learn something new about Prednisone every time I'm on it! Through the years, I've learned how to navigate the side effects of Prednisone to some extent but it certainly didn't start that way!

After a LONG diagnosis process I was finally diagnosed with a disease called Systemic Juvenile Rheumatoid Arthritis (Systemic JRA) at the age of 8. Very shortly after finally receiving that diagnosis I was introduced to Prednisone in a big way! My doctor put me on 60mgs of Prednisone daily which for a sickly, 45lb, 8 year old girl, that's a pretty massive dose. 

Now at this point I had become more accustomed to medication so I was not hesitant to take Prednisone. However, in my young mind I was not familiar with the idea that a medication could be both a treatment and a problem. At that point I'd never taken any medications that had any side effects, at least side effects that I noticed anyway. This was both a blessing and a curse. Why? Because had I known what the side effects of Prednisone were I probably would have been looking for them and that would have caused a lot of anxiety from the get go. However, knowing what the side effects of Prednisone were before hand might have allowed my mom, family, and I to be better prepared for how the Prednisone would change me physically and emotionally. 

I can clearly remember going on Prednisone at the beginning of winter break, which at my school was roughly 2 weeks. The first few days on Prednisone I really didn't notice anything at all. I wasn't anticipating any side effects and I was relieved to finally be feeling better. And, boy, Prednisone can definitely get your disease under control quickly! It was wonderful! Almost over night my fevers started to disappear and joint pain and swelling diminished.

Then one day about 10-12 days after going on Prednisone my little brother pointed out to me that my face was looking bigger. I know that's not a very long time on Prednisone to be seeing side effects but when you are very small the higher doses will potentially effect you with more severity, sooner. And that's exactly what happened to me. I remember looking intently in the mirror and finding that my face did look quite a bit different and I was shocked and very sad. That the the first time I ever realized the side effects of Prednisone.

My mom and I soon met with my doctor to talk about the side effects. I remember that conversation. There was a lot I still didn't understand and I was very upset. I was worried about my friends and what the kids at school would say. I found that I was having a lot of trouble controlling my emotions and became upset very quickly. I started putting on weight, something I had struggled to do my entire life. It changed so much about who I was.

When I went back to school the first day was really rough. Every kid had a question! Some of them were just plain mean and some of them meant well but it was still overwhelming. I was still learning to accept Prednisone as part of my life and the changes it brought and I still didn't understand Prednisone very well myself. Over the first few weeks I was bullied pretty bad, some kids were afraid I was contagious, and some kids offered advice on how to get feeling better. I became very outspoken about my condition and the more I learned about Prednisone the more I told my classmates. School became a lot more bearable after that.

My first sentence with Prednisone was a long one. I ended up staying on Prednisone at varying doses for just short of 3 years. My mom was always quick to point out when the side effects seemed to be going away. It was a huge encouragement to me. I struggled with self confidence for a long time but I still had a very full life. My family, especially my mom and brothers were very supportive. My mom was always there to hug me and talk with me when the kids at school were mean and my brothers tried to protect me as well.

That first time on Prednisone taught me a lot! My family and friends helped to remind me that the effects of Prednisone didn't define me. I was still able to enjoy life despite the changes. I learned to be strong emotionally. Most importantly I learned to have compassion for others who were sick like I was. I learned how important it is not to judge a book by it's cover because you just never know what someone else might be suffering with.

And let me tell you guys, the side effects, they certainly don't last forever. It might feel like a long journey and honestly in the moment sometimes it really is but there is a light at the end of the tunnel:)

Talking with your Doctor about Prednisone

There is no way to sugar coat it - Prednisone is a rough drug. It can help a TON but it can also have you dealing with some pretty harsh side effects along the way. The very best way to not only fight your disease properly but also to endure the side effects of Prednisone is to have a great - not just good - but great relationship with the doctor that is prescribing it to you!

Like every great relationship, communication and honesty is the key. That goes both ways! I've talked with many, many people who have been on or are on Prednisone that feel unsure or uncomfortable talking with their doctor about the side effects and even about their tapering plan. With Prednisone, it is vital to be on the same page as your doctor about your treatment plan. 

So Here are some things to consider;

 - Often times Prednisone is not an easy drug to come off of so it's very important to have an idea about a tapering plan or ideal time frame before going on Prednisone. This is something that you will really need to discuss with your doctor thoroughly. Often times people are put on Prednisone very quickly and many times at large dosages because their immune system is going nuts, while this might be the case, it's still important to ask a lot of questions. Sometimes, your doctor may not know how quickly your immune system quiet down on Prednisone so it might be hard for them to tell you exactly how long you'll be on Prednisone. I've certainly had this happen to me. In those cases I usually ask my doctor for the worst case scenario that way if plans change it's usually for the better:) 

 - You will most likely be dealing with some sort of side effects, especially if you are going on large dosages. Talking with your doctor about what to expect on Prednisone with your specific dosage is a really good way to get a handle on your side effects before you even began having them. I can't tell you how many people have told me they wished they would have been better prepared on what to expect with the side effects, myself included. It really does make a big difference. 

 - If you are going on long term Prednisone treatment it's also a good idea to ask your doctor about recommendations for follow up care with different doctors. Unfortunately, Prednisone has the ability to effect many areas of your body so you may need to be treated with multiple doctors. For example Prednisone can do a number on your teeth, bones, eyes, and even your emotional state so it's very important to have follow up care to catch any problems early on and even to prevent them entirely with the appropriate providers.  

 - Consider asking your doctor about different methods to deal with the side effects of Prednisone. For example weight gain and water retention is a side effect that common with many people on Prednisone. Your doctor may be able to advise you in ways to change your diet and even exercises you can do (even while ill) that can help keep some of the weight off. 

 There are also some red flags to watch for. If you are having a rough time with Prednisone you need to be able to discuss them openly with your doctor. If your doctor isn't willing to talk to you or work with you for a possible change in treatment or dosage then it might be worth looking into another doctor. Prednisone is such a serious drug with the possibility of intense side effects so if your doctor isn't allowing you to express your frustrations and your worries and taking your complaints that is a big problem! 

I hope you have been able to talk with your doctor openly! I have always believed the more knowledge you have the better so if you are facing a treatment with Prednisone I urge you to seek out as much information as possible so that you can feel confident about your treatment plan The best place to start is with your doctor!:)

Daily Quick Tip

Two very important parts of your body that need to be well monitored on prednisone are your bones and your eyes. These are important parts of your body to watch anyway but even more so on Prednisone. Prednisone has been known to be a catalyst to Cataracts as well as bone density problems such as Osteopenia and Osteoporosis.

If you are dealing with Prednisone chronically meaning more than a couple months and especially if you are taking higher doses (25mg+) your doctor should schedule you to get a bone density scan every 6 months to make sure your bones are strong. Many people on Prednisone are prescribed Calcium and even medications like Fosamax if the bone scan shows bone decay and for many people these drugs are very effective. I was diagnosed with Osteopenia (early stages of Osteoporosis) about 10 years ago. I went through a couple courses of Fosamax and today I've had hardly any problems with my bones:) I'm very glad I got checked because my doctor was able to treat it quickly before more damage was done. Unless we have some really awesome robot limbs in the future I'm stuck with them bones so I want to keep them working!

Long term Prednisone use can also do a number on your eyes such as the growth of cataracts. This is a very simple thing to watch and it should be done about every 6 months. Your eye doctor should give you a dilated exam to check the health of the back of the eye which will show any evidence of Cataracts. Luckily if Cataracts are forming, treatment to have them removed is very safe and extremely effective!

On Prednisone it's definitely helpful to use preventative health measures. Checking in with all parts of your body is so very important to do even if it costs you a few more trips to the clinic. But I truly believe it's totally worth it!

Different Forms of Corticosteriods (Prednisone) Part 2

Even though most people refer to corticosteroids as Prednisone there are actually different types, used for a range of different problems. Some people have even had bad reactions to some forms of these steroids but not are still able to take some of the other forms. So to give you a little idea here are a few of the different types of corticosteroids and what they might be used for;

 Topical cortisone

There are OTC treatments like Cortizone 10 which are used to treat mild to moderate skin irritations. They may be used in a person with a skin condition such as eczema and psoriasis.

There are also many prescription topical steroids that your doctor can use for specific conditions. OTC creams are generally to treat more common, less problematic issues while prescription creams are usually stronger or more specific to a particular problem.

- Oral Corticosteroids

 Including both liquid or pill forms, there are quite a few of them as well but some of the more popular steroids are Prednisone, Methylprednisolone, Deltasone, and Decadron. Oral Steroids have a very wide range of dosing. They are not OTC so you will need an Rx but they can be used to help with relatively simple problems such as treatment for a poison ivy reaction or very chronic, severe illnesses. The pills come in a variety of different mg 1, 5, 10, and 20 so that they can be used in many different doses.

 Doctor's also might prescribe something called a Medrol pack which is a tapering dose of steroids. These packs are often used when a person is having an asthma flair or a flair of an auto-immune disease. The packs are usually no more then 10 days.

                                       

 IV (intravenous) and IM (intramuscular) injections 

 Often given when someone is having a severe allergic reaction or if they have an auto-immune disorder that is getting much too out of control and the symptoms of the disease need to be controlled immediately. IV and IM steroids are usually used in larger doses in an effort to control the disease quicker. In extreme situations high doses of IV prednisone can even be used to save a person's life. Sometimes they are given as a treatment "cocktail". For example IV steroids such as Solu-Medrol are often used in conjunction with chemotherapy drugs and/or radiation in the treatment of cancer. This sometimes can help to slow the growth of the cancer cells.

Also just a little tip if you are going to take IV prednisone (and many doctors don't think to mention this...) when you are getting the infusion, which can take as little as 20 mins or as long as a few hours, it's always important to bring with you sometihing tasty to suck on. I have had at least a hundred IV infusions of Prednisone and every time, for some reason, you get this strange metallic taste in your mouth. My personal preference is to suck on creme lifesavers - for some reason it does a GREAT job at masking the taste:)

 Steroidal eye drops

Steroids may also be needed to control inflammation in the eye. I actually work as on Ophthalmic Technician and we routinely prescribe steroid drops to keep inflammation down after cataract surgery. They can also be used when a person has an eye infection.

Cortisone Injections

Cortisone injections are given usually in the joints to control swelling. Obviously this is mostly used when someone has Rheumatoid Arthritis and there is a joint tha is chronically swelling. Many times doctors will not only inject the cortisone in the joint but they will also use that opportunity to draw out a lot of the fluids that are in the surrounding tissues. Cortisone injections don't tend to have very many side effects and have a pretty high success rate of controlling the inflammation in the joint for at least a time.

So there you have it guys! If you have any questions about any particular form of corticosteriods please feel free to ask away and I'll do my best to answer:) Thanks for reading everyone!

Back to Basics - What is Prednisone?! Part 1

Funny enough I started this blog a little while ago and never actually wrote a post on basic information about just what exactly Prednisone is and why you might be on it! That might actually be helpful to you all, right?! When I started writing this post I realized that this post would be covering a lot and therefore REALLY long. So I decided to split this into 3 posts - What is Prednisone and why do we need it (1), Different Forms of Corticosteroids (2), and What diagnosis' might require Treatment with Prednisone (3). Hopefully splitting it up this way will make it a bit easier to read lol!

First things first...

Let me just tell you that there is nothing in the world of medicine like this drug - you can take that as both a positive and a negative. I'll be the first one to say Prednisone has, without a doubt, saved my life many times as well as hundreds of thousands of other people suffering with an auto-immune disorder and even other illnesses. The medical field refers to it as a miracle drug and it is truly nothing short of that. As much as I loath the thought of being on Prednisone (I'll explain that later lol) I'm incredibly grateful for the brilliant minds that explored this drug and made it available to us. I absolutely have to express that to you all because a lot of what you might hear about Prednisone and the side effects are very negative. However, Prednisone does have a very important part to play in the world of medicine and I have to give it the props it deserves in that way!

Okay to enough rambling lol - What is Prednisone?

Since most of us on here are probably not doctors (nor am I lol) so let me just explain Prednisone in the way I understand it - WebMD says that Prednisone is a medication in the drug classification called corticosteroids (which doesn't mean a whole lot now but we'll get into that later) and it is a very powerful immune suppressant drug. Basically, it is used when the immune system is seriously wigging out. When Prednisone is taken by someone with an auto-immune disorder the symptoms of the disease quiets down. So for example in my case - I have something called Still's disease which is (loosely) a bizarre form of Rheumatoid Arthritis. When I take Prednisone my immune system quits attacking my joints and they are no longer red, swollen, and painful. The Prednisone has suppressed my out of control immune system so that my body is no longer being attacked by itself which causes all of  these nasty symptoms.

Getting a bit more technical, different auto-immune disorders manifest themselves in different ways depending on what cells in the immune system are glitched. Whatever auto-immune disease you have the symptoms are always caused by the body's inability to control the immune system response and it's ability to tell what is "self" and what is a foreign invader in the body. Since Prednisone has the ability to tackle such a wide range of immune cells it is the perfect drug to use during the diagnosis stage and when the disease cannot be controlled by a more specific immune suppressant drug that doctors prefer to use for a long term treatment plan. This is for numerous reasons: they often have much less side effects and are better able to suppress the the specific cells your immune system is over producing. It also takes time for a lot of these drugs to build up in the body so Prednisone is often used in conjunction with them while they're building up in your body to keep you from feeling all the symptoms of your illness.

So why DOES Prednisone work? Prednisone is actually very similar to a natural hormone that is produced in our bodies that you've probably heard of called Cortisol. Cortisol is a very important hormone produced by our adrenal glands that acts as a type of natural immune suppressant. It is absolutely essential for life! A healthy body uses Cortisol to keep the body in a state of homostasis or in other words, balance, allowing the body to fight infection but not allowing it to get out of control. However, there may be times when an environmental problem such as a poison ivy reaction or a disorder that causes a glitch in the immune system which then causes the balance to shift in the body and the body's defense (Cortisol) is not enough to control the immune system. Sometimes the glitch (an auto-immune disease) is that the immune system is no longer able to tell what is "self" and what is "foreign". All of these scenarios is a cause for some amount of corticosteroids in one form or another. Prednisone is a play on Cortisol. It is very similar so it helps further suppress the immune system.

Alrighty guys, I think that's enough for this post. Of course, let me know if you have any questions and be sure to check out the 2nd part - Different forms of Corticosteroids (Prednisone) - for even more info about this drug. Thanks for reading!

My house is clean when I'm on Prednisone!

If there is anything that Prednisone can help you do, it's get stuff done! If you are lucky enough to be up and moving around you will notice that that Prednisone can make you really, really hyper! Honestly, it also makes me a little OCD about things as well and that can be a little annoying to everyone around me.

The one thing that I've noticed Prednisone has helped me with is cleaning my house... and getting it spotless! Many people have found that they have an abundance of energy on Prednisone. This is mostly due to the additional hormones in your system and the effect those hormones have to boost your body. The only down side is that sometimes Prednisone can make you feel really spazzy so working on things that require deep thought and meticulous concentration are not easy to do on Prednisone. But when it comes to doing something like housework, which does not require a ton of concentration - really just keeps you moving and moving and moving which is a great activity to do while on Prednisone!

Keeping your hands busy also can distract you from the other side effects of Prednisone. I found that when I am running around burning energy on cleaning I'm not as worried about that nagging hunger or the fact that my face is getting puffy. It's something you can do and feel productive doing which is finally a positive effect of Prednisone:)

Shakin' Shakin' Shakin' on Prednisone

LOVE BLAZING SADDLES lol! But in all seriousness poor Jim's condition can really be what it feels like to be on Prednisone. The higher the dosage and the longer we take Prednisone the more severe hand shakiness or tremors can be. Actually, a lot of people that are new to Prednisone are quite shocked by this side effect because it's something that can come on pretty quickly and, although it isn't the most severe side effect, it is still pretty noticeable. I've had a lot of people ask me and the community of other people on my youtube videos and on our facebook support group if other people experience the same thing - there's always is a resounding, "YES!" 

Why AM I shaking on Prednisone?

Drug-induced tremors (our shaking hand syndrome) is a simple nervous system and muscle response to certain medications and of course for us that is Prednisone. 

Treatment

Unfortunately there is very little that can be done about the shakiness we feel on Prednisone. If the tremors are very severe and if they are affecting your whole body it would definitely be a good idea to seek medical attention. However, even if the tremors are slight it would still be good to mention it to your doctor just so your doctor is aware that you are experiencing this side effect and perhaps your doctor can adjust when you take your Prednisone or how you take it to help ease a bit of your tremors. 

However frustrating this side effect may be it's important to remember that as you go down on the Prednisone the less you will feel those tremors and it will completely go away when you stop taking  Prednisone and the Prednisone has had a little time to work it's way out of your system. It may stink now but we certainly won't be shaking forever:)