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