Crisis Averted

For what may be the first time I can think of, I averted an Addisonian crisis!

This happened a couple days ago and between being wiped out from that and having family in town for the holidays, I haven't had time to post. But I wanted to be sure to record what happened, in case it can help me or you in the future.

If you read this blog regularly, you know I have been trying to slowly wean back the mega dose of Prednisone I was on. I started on 25mg in early November and was down to 7.5mg the week of Christmas. The day after Christmas, I only took 5mg. By the next morning, I was a shaking, sweaty wreck.

I woke up around 7am and fed the kittens, like I do every day, but I forgot to take my Prednisone. I know, so not ok. I was just so tired and I kept falling back asleep. I finally remembered I needed to take my meds at 10am so I had gone a good 20 hours without any steroid.

My body got PISSED off.

I started to feel the familiar signs. Severe nausea and feeling like I need to vomit. Shaking and heart racing. Followed by heart slowing.

I checked my blood pressure and heart rate twice during this episode. My heart rate went from 48 bpm to 110 bpm in the space of about 60 seconds. I have no idea what that means, I would think it was wrong but the bp reading came out the same, so I don't know.

I knew I needed to stay hydrated, get some food in me, and probably take more steroids than the 5mg I had managed to down around 10am. I called my oh so awesome dr, who totally calmed me down. I was in tears at that point, I was so sure I was going into crisis and I didn't want to spend the last few days of my family in town in the hospital.

My doctor advised me to take another 5mg since I hadn't thrown up yet, and then take another 5mg in an hour. My sister made me some scrambled eggs and I downed about a liter of Kangen water.

And for the first time since I don't know when, instead of falling down the scary cycle of nausea, throwing up, then hospital, I actually started to feel better! I stayed in bed and watched movies with my sister most of the day, but by yesterday I was actually feeling pretty good. I kept taking 15mg/day which was my dr's recommendation. I think I will stay on 15mg through the holidays and then start cutting back by 2.5mg a week again.

The goal is to stabilize around 7.5mg or 5mg of Prednisone so I can switch to the equivalent dose of Hydro Cortisone. It has been a long, slow process but I'm determined not to give up.

I can't stand the side effects of Prednisone or Dexamethasone and HC feels like my only hope!

PS: If you pray or believe in positive thoughts, please send some love to my friend Heather, Baby Gavin's mom, whom I have posted about before. She has a very important blood test tomorrow that could affect the course of her life. Please keep her in your thoughts. Baby Gavin passed away 11 months ago today. We were able to perform a Random Act of Kindness in his memory on his 11-month birthday, December 26th. I will post pics from that day soon. It was incredible.

Let's Talk About Drugs

Sorry, not the fun kind.

Here's what I am on, what I used to be on, and what I am trying to transition toward.

You should probably know that in addition to Addison's Disease, I also have Hashimoto's Disease (which affects the thyroid), and have had episodes of Long QT (which can either be a genetic disorder or a reaction to medication, we have never been able to determine which one), and episodes of tachycardia and skyrocketing blood pressure, so I take meds for these issues as well.

Addison's Meds:

 - I was on 5 mg of Dexamethasone. That is down from 10 mg that I was one at one point. In hindsight, a ridiculously high dose. I wonder what drugs the doctor that signed the prescription was on.

- About two months ago, I switched to 25 mg of Prednisone (15 in the am, 5 around 10am and 5 around 1pm). This is a high dose as well but considering my body was used to so much from the Dexamethasone, and because I was in a community theater performance (making for long days), I wanted to start high and be sure to avoid a crisis. I am glad we did too. The first day I felt like I was going to faint all day. The director pulled me aside to ask what was wrong. Randomly enough, her husband has Addison's so I told her I switched my steroid and she totally understood. Each day after, I felt a bit better.

- I am currently weaning my Prednisone dose down to 7.5 (5 in the am and 2.5 in the afternoon). I am doing this by cutting my Predinisone down by half a pill (or 2.5 mg) every week. My doctor recommended "tricking" my body by taking that 1/2 pill less every other day. Right now, I am taking 7.5/10 in the morning and then 2.5 in the early afternoon. Next week, I'll take 5 one day in the morning and 7.5 the next, then 5, then 7.5, and so on. Does that make sense?

- My goal is to get down to 7.5 mg/day because I understand 5 mg of Prednisone is equivalent to 20 mg of HC. And my next step is to switch to HC. Why? Well, I've received a lot of feedback since starting this blog and a number of people have said how much better they feel on HC and how few side effects they experience.

Note: Everyone who has reached out to me has had their own story and has found their own medication or mix of medications that works best for them. I heard from one person who takes Dexamethasone and only gained 5 lbs! But overall, it seems the majority of people feel best on HC and experience the least side effects. 

Other Meds:

- Novotiral (1 pill in the morning for hypothyroidism)

- Metaprolol (a beta blocker I take 50 mg of in the morning for heart issues)

- Calcium - I take twice a day since steroids make you at higher risk for osteoporosis

- Vitamin D - I also take this twice a day since the last time I had my Vitamin D checked it was very low

- Vitamin E - I'm not even sure why I take this but I have two big bottles I bought at some point, so I take two Vitamin E pills a day

- Adepisque - a combo of three meds (Amitriptilina HCI, perfenazina and diazepam) that I take in the evening. It helps me sleep, helps me not have nightmares, and is an anti-depressant as well.

Supplements I plan to start taking:

- Magnesium
- Vitamin C
- Vitamin B complex (I had B12 sublingual tablets I was taking but I just ran out)
- DHEA

I will keep you posted as I change meds and add supplements and let you know of any positive or negative changes I feel.

I think the main thing I have learned through researching this all, is that Addison's Disease is NOT a one treatment fits all situation! I don't think I even heard from two people who took the same dose of the same med, at the same times. It's all about what feels best for your body - something only YOU can tell. Your doctor can't tell. Your partner or parent can't tell. If you aren't happy with how you feel, don't give up. There are only about 17 million miracle cures out there and I'm going to try them all.

Maybe I should have called myself the Addison guinea pig. Oh well. I love alliteration. Always have, always will.

Love,

an Addison Alien

Picture Proof

The steroid swelling doesn't stop me from smiling and dancing. (I'll explain my senior dance partner in a later post.) 

Love,

An Addison Alien

Welcome to Addison's Disease

Most of you know this blog was started after I wrote "My Story: Part 1". It was originally a very long Facebook post and it received a lot of good feedback. So much so, I thought I would start a blog and keep track of all the great information and advice I was receiving from various Facebook support groups.

A wonderful woman sent me this message after reading my post. She has graciously allowed me to share it here. It is for those newly diagnosed with Addison's Disease, but I have to say I learned a thing or two and I was diagnosed almost 2 years ago. She says she's not a writer. Clearly, she is lying.

Dear newbie:

I hope this helps to explain this autoimmune (you did nothing to get it), rare (I’ve read that only 1 in 100,000 people get it), chronic (goes on and on and on…) disease. Please remember that I'm not in any way medically trained. This is just thoughts put together by someone who has lived with primary Addison's disease for 47 years.

#1 Day to day living with Addison’s Disease can be complicated for many. Although not all of us with the disease experience the same daily challenges, the basis of living with Addison’s can be challenging. 

Once you find out what your correct dosage of steroids is, you can probably live about the same as you did before diagnosis. But there will be changes in your life. You will need to remember to take your medication on a daily schedule. You will find out what times work best for the type of steroid you use.

Here is what I have found out about living with Addison's. Remember, this is my version based on what I’ve lived and learned from others over the years.  I’m no medical person, just someone who has lived with Addison’s for 47 yrs.

For a person without Addison’s, the body starts to produce it’s cortisol/adrenaline around 5 or 5:30 a.m. By 6 a.m. or so, he/she is waking up. That is why many people wake up just before their alarm goes off during the week and will be awake earlier than they want on the weekends and not able to fall back asleep. It’s the body getting ready to face the challenges of being awake during the day. 

Night time comes. You start getting sleepy. It’s that the cortisol/adrenaline in your system is lower than it was first thing in the morning. You start out with a higher dose first thing in the morning, the body keeps you supplied with what you need during the day and slowly tapers off until bedtime. You fall asleep, but there’s still that pituitary gland monitoring your body just in case something happens during the night, and you need to be wide awake for what came up to be addressed before morning. 

Not so for those with Addison’s Disease. The body produces no cortisol/adrenaline. To get cortisol in our system, we need to take a steroid replacement. Steroids come in several forms: hydrocortisone, prednisone, cortisone acetate, prednisone, dexamethasone, and some others I might not know about. Each one is released at a different rate and has slightly different properties. Once we take the steroid, it takes from 30 min. to 45 min. to be absorbed into the system to give the energy the Addisonian needs to face the day. 

Until it is in our system, we don’t have the energy it takes to perform “normally”. What does this mean on a day to day basis? If we want to be awake and functioning by 6 a.m., we need to set the alarm to wake up at 5 a.m. Then we need to get up, take the steroid, and go back to bed for an hour. As the cortisone gets into the system, it slowly wakes us up. Then we try to get about a normal day – having breakfast, getting ready for a job, driving to work. In a perfect scenario, this would work. Who wants to wake up 1 hr. earlier than the rest of the world every day to take a pill this way?? 

My endocrinologist once told me it was like a person who is going on a long road trip and would be driving all day long and possibly into the night. If you get on the road with just a few fumes of gasoline in your gas tank, you will need to be trying to constantly fill up the tank while you are continuing to drive down the road; however, if you start with a full tank, you don’t have to fill up constantly or worry about the level of gasoline in the tank for a long time. 

Non-Addisonian: During the day, any time the body needs more energy to cope with stress, the adrenals in a non-Addisonian will provide the body with more cortisol/adrenaline to meet the level needed to get through the situation. At any time and no matter what the situation, the body will be ready to face whatever life throws at you. 

A long, difficult day with many challenges at work while you’re not feeling well and mentally stressed about a family situation waiting to be discussed or ongoing at home: no problem. The pituitary and adrenals take care of you with as much cortisol/adrenaline as you need. You can handle it. 

Need to stay up late (party; bring home work to get done for the next day; sick child waking you up during the night? etc.)? 

No problem. 

Need to be in extreme heat or cold? 

No problem. 

Didn’t get enough sleep the last few nights? 

No problem. 

Some extra physical activity you need/want to do? 

No problem. 

The list goes on and on with any change or challenge you face every day. “Fight or flight” and you’re ready for either. This is constantly going on in your body 24/7/365. 

Addisonian: You wake up and get ____mg. of steroid. After 45 min. to an hour, you can start to function. Depending on the steroid replacement we are on and the medication schedule, we don’t get another dose until that time. What if all of a sudden after being up for 3 hrs., we face something we refer to as “stress”? No extra steroids in our system until next dose time. I’ve seen 9 or 10 endocrinologists (specialists in Addison’s Disease) over the 40+ years I’ve had this disease, and they all tell me that the only time I should increase steroids is if I’m running fever over 100 degrees, having surgery, have the flu (vomiting and diarrhea), or something major like that. 

We face the same challenges as any other person, and I’m sure there are times I needed more energy to get through. A cold; extra demands at the job; sick parent/child; etc. Unfortunately, I’m limited to ___mg. of hydrocortisone. When it’s gone; it’s gone. 

There is really no conclusive study I’ve heard about that tells exactly how much steroid I should take. Everybody is different and has different needs. I have other medical problems, but there is no research on how much steroid I need to handle them. We try to live through a whole day as a non-Addisonian taking the dose of steroid prescribed by our endocrinologist without being tired earlier than “normal people’s” bedtime. It doesn’t always happen that way. 

Diabetics have a tough time, I know. My father has diabetes. For those with disease, there is a glucose monitor. They can check their blood sugar whenever necessary and as many times a day as they think there might be a problem. 

Unfortunately, there is no way for an Addisonian to know how much steroid is in their system. All I know is when I feel so bad that I need to lie down before I fall down, muscles start aching bad, I feel nauseated, and other symptoms, I then know that I’m low on steroids. I take what endocrinologists call a stress dose. It’s an extra amount of steroid to prevent me from going into an Addisonian crisis. 

The crisis situation is when you are really weak and probably on the verge of losing consciousness. This situation calls for someone to get you to an emergency room immediately. At this point, you need an IV with 100 mg. hydrocortisone to pull you through. It is life threatening. I’m not exaggerating here. The bad part is that there is no way to determine exactly how much extra steroid to take when you notice that things are starting to go bad. If there were only a type of tester as there is for those with diabetes, many of us would not have the problems we do. 

Sleep time? Not quite the same as non-Addisonian. If there’s still too much steroids floating around the system, you can’t fall asleep. That’s the steroid job!! Keep you awake. Many complain of trouble falling asleep or getting a good night’s sleep on a regular basis. This has been a big problem for me for 45+ years. 

The other part of the adrenal gland helps to control blood pressure. It balances the sodium and potassium. Most people are aware of this with all the publicity about high blood pressure. Addisonians have the opposite problem. We need the mineralocorticoid to help retain enough sodium to actually have a blood pressure. Our problem is the opposite of the rest of the world. 

Many of us, those with primary Addisons, need to take a medication called florinef to help retain salt in our body. We are also told to put as much salt on food as we can stand. This is because for the florinef to help the body hold the sodium, we need to have the sodium in our systems.  

I live in a very hot, humid climate. During the summer, I need to take salt tablets in addition to the florinef and added salt on my food. I cannot tolerate heat, even with the medications. My personal limit is 85 degrees. After that you can tell which one I am in a group outside. I start to sweat profusely, breathe heavily, and pant like a dog who has been left outside in the heat without any water. I start to get weak and wind up sitting down or finding some air conditioning. 

Again, I’m not able to participate due to my body not responding to the need. 

Again, no way to determine how much of the florinef and/or salt I need. 

This doesn’t take long to happen. I’ve gone out to get the mail in the middle of a hot summer afternoon and come inside with my blouse all wet due to sweating, very thirsty, and very tired. I could go on and on with examples of what the heat does, and how little time it takes to be in this heat before I start to feel ill. Over the years I’ve learned what to do to avoid these problems and crisis. Unfortunately, it means that I can’t participate in many activities or family outdoor get-togethers. 

This is just a brief summary of what I find I live daily. 
There is also the issue of side effects of long term steroid use that I wasn’t told about when I was diagnosed. Steroids can cause osteoporosis, so DEXA bone scans should be done and we should take extra calcium daily. I didn’t find out about this until I’d had this disease for 20+ years. At that point I already had osteopenia. Luckily with Fosamax and calcium, I’ve managed to get back to the normal range. Steroids do cause weak muscles; thinning of the skin – I can wake up and find small openings in my fingers or on my nose from pin head size to the size of a small paper cut; “moon face” as it’s referred to – puffy cheeks due to retaining fluids from taking too much cortisone – but what do I do if I need it to keep me alive? As can be expected, there is more to this which you can research, but I’ll end this here. 

Summing it up, many endocrinologists seem to have the opinion that as long as the cortisol and florinef are taken daily and the electrolytes are in the normal range on blood work, the Addison’s Disease is under control until the patient gets to a crisis or the verge of a crisis. This is not what I live, and from others with this chronic, rare disease have said, many of their lives are not like they were pre-diagnosis. 

-- Vicky Pantusa

My Story: Part 1

This is part 1 of a very long story which I plan to share here. I am starting from now and working my way backwards. 

After years of undiagnosed health problems, we finally figured out that I have Addison's Disease. The treatment is a type of corticosteroid - dexamethasone being one of three possibilities -all of which can potentially cause weight gain, especially around the face (aka moon face), back of the neck (aka buffalo hump), and belly. Other side effects include fits of rage, hence parents of children on this drug nicknaming it the "demon drug".

I was originally put on Prednisone and my prediagnosis weight of 85 lbs slowly and steadily climbed to 100 lbs over the next few months. Sadly, my Dr had a heart attack and I had to find a new one. After some time, I was recommended to a local Dr who came across as very smart and very charming. He convinced me to switch to Dexamethasone because of medical details none of you care about and because it was significantly cheaper. He insisted it would not cause side effects when taken at a replacement dosage.

I was so excited when I hit 100 lbs...I had no idea the number on the scale would keep going and going and going...

Was he ever wrong! It took a little while but I started to literally balloon up. I looked pregnant! I got in touch with the Dr who told me I just needed an enema. Oh and my steroid dose was too high so cut it back. Ok, that seems to work for awhile.

Cut to me in the hospital with what feels like an adrenal crisis - severe pain in abdomen, vomiting, heart rate jumps, bp goes crazy, basically feel like you are dying cause well, you kind of are. Your body can't survive long term without cortisol and an adrenal crisis is your body's way of saying "HELLO I need some cortisol stat!"

New Dr has no idea why I am in crisis if I have been taking my meds. Basically implies I am making this up and actually says I am more likely to figure out what is wrong than he is. Great.

Meanwhile, emergency clinic drs do not understand Addison's and do not have me on a drip and instead just give me a shot of cortisol. They accuse me of being a heroin addict and drug seeker. I am crying, confused, and in incredible pain. I finally convince them to do a cortisol blood test to prove I am in an adrenal crisis. They scoff and shake their heads but do it. The bottom of the healthy range is 15. My test showed .03.

I finally see the managing Dr at the clinic. He says I clearly need to up my daily dexamethasone dose and that is the only reason he can think of why I went into crisis. That and possible ulcers because steroids are hard on your stomach. I decide he will be my new, New Dr.

When I am well enough, I research and find out that the same Dr who put me on dexamethasone also put me on a med that prevents your body from absorbing cortisol. So, I guess he was right about one thing: I was the one to figure out what caused my adrenal crisis.

New, New Dr wants to see me in a week. In that week, I gain 10 lbs. I ask him, is this normal, maybe my thyroid is acting up again? No, no he says. Just keep taking the meds and see me in two weeks. I gain another 10 lbs, he insists again it is normal, and clears me to be seen on an as needed basis.

My face is changing, I hardly recognize myself. I feel like a whale. I try to diet and exercise and it doesn't make any difference. Frustrated, I do my best to just ignore it and tell myself to stop being so shallow. I mean, I'm alive! When a specialist tells you to go directly from your appt to a pharmacy to fill a prescription "to prevent sudden death", you know to be thankful for each day. But deep down, I know something is wrong.

Finally, I called to schedule an appt with new, new Dr. He is busy but another Dr in the building can see me. I actually think this is a great idea and ends up being the best choice ever.

Enter Dr Jim. I explain everything to him and he immediately sends me for a full thyroid panel. When I bring him the results, he says he can't believe I walked in to my appt or could walk at all. He was amazed I wasn't hospitalized nor felt the need to be. I was thrilled! Something was making sense. No thyroid function equals quick and dramatic weight gain.

We have to slowly introduce the thyroid med. Getting to a full dose takes 3 months. I feel less swollen. But it's not enough. I'm convinced it's the dexamethasone after hours of research and communicating with people who have taken it themselves. Certain side effects, like stria, seem to be dexamethasone specific.

Dr. Jim helped me switch back to Prednisone about two months ago. We started high to be safe and make sure to avoid an adrenal crisis. I am now slowly weaning that steroid dose down. I know from others it can take 6 months or more to see a total reduction of the dexamethasone side effects. And long-term prednisone use has its own side effects and most people gain weight on it too. But I think it's the better option and I feel more like myself since getting off of dexamethasone.