Wednesday, August 07, 2013

Summer means...

Summer can mean we have to be very mindful of the state of our electrolytes. I was already needing a slight increase in my fludrocortisone probably due to the heat of summer then I began to eat all the wonderful fruits and veggies available and pow! I got into trouble before I knew what happened.  Seems all the wonderful things I love are full of potassium.  I am trying to watch how much I consume and drinking lots of water, either club soda or plain water.  Also, watch how much caffeine you consume as it will serve as a diuretic.

This is just  gentle reminder as it is on my mind of late! Summer is a wonderful season but for anyone with Addison's it has a few pitfalls we need to avoid. 

Enjoy the rest of your summer!

Monday, May 28, 2012

Weather is getting hot...

Those of us with Addison's Disease have or will learned to be cautious when exposed to high temperatures. We just don't handle heavy sweating and salt and potassium loss. It is a balancing act to keep the two in the right ratio...drinking too much without enough salt and we flush ourselves out. If we are taking fludrocortisone this helps to retain sodium but can lead to low potassium. Some have to really watch the potassium foods they consume as they tend to have high potassium. As I stated: it is a balancing  act! Not always easy...but necessary to live well with Addison's. 

I love warm weather but I can't take the heat! So I stay inside a lot! Or time your outside activities to a cooler time of day. It's all about compromise and knowing what your body is telling you. Getting overheated can be very serious for us so take measures to protect yourself from the heat of summer. 

Drink lots of fluids and get enough salt to insure you enjoy your summer! And if you need to keep your potassium levels up, a banana or tomato can be a good option there.

Have a great summer!

Tuesday, May 15, 2012

I don't look like me anymore!

I believe that life has a way of cutting us down to size. I can see that I used to be a thin little thing who couldn't understand why anyone had a weight problem, I wouldn't have admitted to it, but I am afraid it was true. Well, I am one of those with too much weight having taken up residence on my body. It embarrasses me, it disgusts me, but I am apparently not strong enough to do something about it. I am sure most do not know that I have an illness that requires me to take steroids to live and that they have finally destroyed my metabolism, and I have a thyroid disorder, all creating a perfect storm for weight gain. And I have to add menopause! I am not happy with myself. But am I ready to get serious about doing something about it?

So, those of you who have been diagnosed with Addison's Disease and have seen a big change in your body and looks, it happens to many of us at some point. The sad thing is it happens to many newly diagnosed patients and not only are they struggling to feel better, they see a rapid weight gain. Of course many times there has been a large weight loss before diagnosis and you need to gain back the lost weight but it doesn't stop...and is soon way out of control.  I took steroids for years without being over weight but then things changed! Why? Probably age and hormones affecting the metabolism. Doesn't help much to tell myself this...I want to be the thin me again!

And when friends make unkind remarks or fail to recognize you...that really wounds, doesn't it? So, there can be a real and troubling change to the appearance of those with Addison's, which strikes at our core! You are not alone when this happens...and of course it is much more important to feel well and take our medicines in order to achieve this wellness, but it does seem to add insult to injury when the steroids we require affect us so.

Don't let it change the inner you! You are still the same person you were before the steroids. Now, I agree, that is not as much comfort as losing the weight but be patient and happy with the person facing you in the mirror each day. It will get better with diet and exercise. Try a lower carb and higher protein diet with no white foods and less sugar. I personally have made the move away from artificial sweeteners so that means I am eating more sugar but I feel it is better for me...you just have to think portion control! That's my big obstacle! I love to eat! And for most of my life could eat whatever I chose and as much as I wanted. Well, that day is over and I am having trouble coming to grips with it. Denial, really! But I have to take responsibility for my situation and make the changes needed.

Let's not let Addison's win!

Thursday, March 01, 2012

Being positive...

Even though you have been diagnosed with Addison's Disease or Adrenal Insufficiency it is very important to stay positive. I am not by nature an upbeat, positive person...but it is much better for me to not dwell on how sick I feel or am or that I have an incurable disorder. Addison's is a very treatable disorder. We can live a fairly normal life through taking care to take our replacement steroids properly and learning to stress dose when needed. It is essential that we keep our electrolytes in balance while drinking enough water to stay well hydrated. A well balanced diet, with lean proteins and fruits and vegetables helps keep our weight down. Keeping active if at all possible is good. Enjoy hobbies and interests that keep you upbeat. Just don't make Addison's the thing that controls your life anymore than it must.

Do not let your illness define who you are...you are the same person you were before Addison's. Don't let it control you, you control it! Be happy and healthy, everyone!

Thursday, June 02, 2011

Lessons Learned - Living 42 years with Addison's

This is a post authored by a friend who has lived with Addison's Disease for 42 years as of this writing. She wanted to share her experience of dealing with AD as well as Rheumatoid Arthritis. This has posed it's own set of problems and she shares her hard earned knowledge with us. Thank you, Vicky.

Another thing I learned after 42 years as an Addison's patient

As you can all imagine, after 42 years struggling with this disease, I've been through a lot as far as trying to figure out the correct amount of medication(s) to take to stay as normal as possible. I've read as much as I can, which sadly isn't as much information as we should have, to try to avoid a major crisis problems, or other information we should have to try to control Addison's in relation to other health problems. One publication that was very helpful is 'Living with Addison's Disease: An Owner's Manual' for individuals with this disease. It was very thorough. Also, I finally found a couple of places on the internet where others shared their experiences. I'm not that great on the computer skills, so I thank all who take the time to share what they know.

One thing I want to share now that I just recently figured out. I complained of sore muscles and swollen, painful joints for several years. It was all attributed to side effects from long term steroid use. I had started back to work as an instructional assistant in Sept., 2005. I was in some pain, but as you know, the only way for us to get health insurance is to be part of a large group. If not, you wont be able to have anyone write you a personal health insurance policy. The only other health insurance I could get was through the state high risk pool. The premiums are extremely expensive. I thought that instead of all of the rigors of full time teaching, just being an assistant would not be as difficult for me. In Dec., 2006, I was having more joint pains and coming home more and more tired as the months passed. More doctor visits, and I was told the same thing: side effects from long term steroid use. I plugged along. In the spring of 2008 I was really in pain and struggling to walk a lot due to extremely sore thigh muscles, sore back, painful feet/toes, and very swollen, bent fingers. Naturally, the heat in South Texas was playing havoc with me trying to balance the correct amount of salt and florinef, since I spent a lot of the day going around campus with most of the walkways outside. When school let out in May, 2008, I came home and went to bed. I could hardly move. I was in a lot of pain and knew it was more than spending long days on the job having to be in the heat so much. I saw my primary care doctor. She said I had acid reflux, which I did. To be sure it wasn't more, she had me go to a cardiologist for a complete heart work up. Everything was fine. I saw the endocrinologist. All of the blood work was fine. I spent almost all day in bed and with no energy and sleeping most of the time. Another visit to the primary doctor. No different result. In April, 2009, I again saw the endo. He said thee was something going in not related to Addison's and referred me to a rheumatologist. I'd spent the last 10 months pretty much doing nothing but lying in bed in pain and feeling terrible and complaining to my doctors. I saw the rheum. 2 weeks later. He listened to my history and symptoms, examined my hands/wrists/fingers and feet/toes. He simply said "You have severe rheumatoid arthritis". I was shocked. He gave me a Medrol shot, a Medrol dose pack to take and sent me for tests to confirm. On my next visit the tests showed RA. I had 2 cortisone shots, one in each knee. He put me on methylprednisolone to try to reduce the inflammation. Another month and cortisone shots on teh 4 most painful fingers. I also started on and oral medication called methotrexate, which is taken once a week. I took it at night as I realized that it made me very sleepy. In fact. for 2 days after I'd take it, I was more worn out than normal, if that's possible. I was on a rather high dose of methylprednisolone for 10 months in an attempt to give me some relief. The endo. said that I should cut back the methylprednisolone as quickly as possible, but the rheum. said I needed it for the severe RA.

In June, 2010, I started on Orencia infusion. ( that means it's a medication given through and IV.) After the first one, I came home and within 2 hours I was sound asleep. I sletp for 3 days. After the next infusion, i had the same result. It dawned on me that maybe the Orenca was a "stressor" on my body. I called the endo. before the next one. He said to increase my hydrocortisone 5 mg. on the day of the infusions. I was scheduled to see the rheum. before the 3rd infusion. I told him what the endo. had said. He told me that I should increase the methylprednsiolone to 2 of the 4 mg. tablets 3 times a day: the day before, the day of, and the day following the infusions. Now, there is quite a bit of difference in the amount of extra steroid here. As I understand it, methylprednisolone to hydrocortisone is a 1 to 5 ratio. Meaning, 1 mg. of methylpred. is equal to 5 mg. hydrocortisone. In effect 2 of the 4 mg. methylpred. tablets ( a total of 8 mg.) are equal to 40 mg. of hydrocort. Since I was taking 8 mg. 3 times a day in effect, I was taking an equivalent of 120 mg. extra hydrocortisone for those 3 days. Endo. says 5 mg. the day of treatment; rheum. says 120 mg. for 3 days. Naturally, there is no information from the company that makes Orencia about what to do if you're taking the infusion and have Addison's disease. I tried the high dose, but I kept having trouble with the high blood pressure and high heart rate. I kept trying to adjust the methylpred.: take 1/2 the methylpred. the day before, so my b.p. and heart rate weren't too high, then take a tapered dose for a couple days after infusion; take 1/4 the methylpred. the day before, and taper; etc. After not getting much relief for the rheumatoid arthritis, I had the last infusion in April, 2010. I still hadn't figured out how much steroid I needed to take to avoid being on verge of a crisis.

I was then switched to an oral medication plaquenil, which I took daily until April, 2011. All along I was on the methotrexate, too. About 3 weeks ago it dawned on me that every time I took the methotrexate, I would be extremely tired and in bed for a couple of days. I wondered if this oral medication could be a "stressors". The last 2 weeks I tried extra steroids the day of the methotrexate. It s a very powerful drug. but I thought nothing of it, since it's just an oral tablet.

I just started on an injection called Cimzia 2 1/2 weeks ago. Here I go again trying to figure out how much extra steroid I need to get through without having and Addison crisis. Again, no statistics. The rheumatologist has no idea what to tell me. The endocrinologist has no idea what to tell me. I've figured out on my own that I definitely don't want to take both the Cimzi injection and the methotrexate on the same day. I give myself the injection on Thursday night and take the methotrexate in Saturday night. Of course, for both I definitely know that I need extra steroids. Unfortunately, for me, there is no way to know what to do. It's up to me to figure out what I need based on "how I feel". I do stay well hydrated, but now it's starting to be summer with temperatures in the mid 90's here in Texas, so I'm fighting the heat thing for Addison's and trying to be sure to take enough salt. Then the rheum. reminds me to limit salt to help prevent some of the bad swelling and pain and stiffness I have due to the rheumatoid arthritis. What to do? What to do? I hate being the one to try to figure out how much steroids to take and for how long when I need my RA meds. Unfortunately, right now the shots are once a week, and the methotrexate is once a week. By the time I start to taper down from one, it's time to increase for the other.

The reason I'm writing this, just in case you read it this far, is to share with those who have Addison's that what I learned during 40+ years about increasing steroids for stress was limited to things like diarrhea/vomiting/surgery/other trauma/etc. I can tell you from what I've been through these past 2 years that you might want to check out medications either oral or injected or IV that are strong. Methotrexate was originally for certain types of cancer; plaquenil is used to prevent or treat malaria. They are powerful drugs. They have been shown to have positive results for some RA patients. Orencia and Cimzia are for RA. it just took a while before I figured out that maybe they could be more than my Addisonian body could handle without extra steroids.

I just hope that maybe someone else can learn something from this note and be able to apply it ti their specific situation. There is woefully little information for us with this disease.

Wishing you all health.


Saturday, April 09, 2011

How your adrenal glands work

The adrenal glands are tiny triangle shaped glands located atop each kidney. These glands are vital to our body's function and it is life-threatening when they fail. There are two parts of each gland: the cortex, which provides several hormones, including cortisol and aldosterone as well as androgens; the medulla providing adrenaline or epinephrine and norepinephrine. It is possible to live without the medulla functioning , but the hormones released by the cortex are necessary for life.

The following article explains what happens when the adrenal glands malfunction and Addison's Disease occurs.

The following shows the role the adrenal glands have in our waking response, cortisol is released at this time in response to the stimulus by the pituitary gland. Without ACTH from the pituitary the glands will not release this needed cortisol, which allows us to go about our daily life.

Cortisol is integral to our body's functioning. Without it we can not get up in the morning, metabolize our food, handle everyday stress, in other words live! But those with Addison's Disease or adrenal insufficiency must do this with replacement steroids, we must learn to mimic the action of the adrenal glands as closely as possible. That is key to living well with Addison's or AI.

I wish you health!

Saturday, March 19, 2011

Voluntary Recall of Dexamethasone Vials & New NDC Number for Solu-Cortef Act-o-Vial

There has been a voluntary recall of Dexamethasone injection ( vials), both single and multiple dose. This is sometimes used to treat an Adrenal Insufficiency/Addison's crisis. I am enclosing the link to the FDA/ Recall-Firm Press Release, dated Mar. 16, 2011. Please read for further explanation of recall.

Please read if you use dexamethasone as your emergency injectable.

Solu-Cortef Act-O-Vial Preservative Free!

Pfizer is now only producing Solu-Cortef Act-O-Vial preservative free. The new NDC number is 00009-0011-03 for the 100 mg. vial. This is the recommended dose for an adult during an adrenal crisis. If you are being told that the act-o-vial is no longer available, please ask the pharmacy to look for the above NDC number.