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.

Vicky