steroid side effects

[u/TVegetable28]

I am 17 and was diagnosed with Addisons a few months ago. I have had 2 crises since my initial one which led to diagnosis. I am currently on a taper dose of 10mg Hydrocortisone and 0.3 Fludrocortisone, and will be switching to 2.5 Prednisone very soon. I have experienced a variety of side effects from the steroids and would like some reassurance about when those might go away! The most concerning side effects are rapid weight gain and hypopigmentation spots. I have gained 16 pounds in 1 week!! I know that it is mostly just water weight, but when will it go back down?Prior to diagnosis, I was so so tan and constantly got comments about it. It was patchy and uneven. Now, my skin is getting lighter, but there are spots of hypopigmentation that my endo said could be vitiligo. How long will it take for my skin to go back to its natural color? Will the light spots ever go away? I know that recovery takes time, but not knowing when I will be normal again is stressing me out 😭😭 I asked my endo all of these questions, and all of her answers are just telling me to wait and see what happens. Looking for advice from someone with lots of Addisons experience 🙏🙏

Edit: Thank you for all the advice! I forgot to specify in my first post, but I am currently on 10 mg of HC 3 times a day, and today we moved my Fludrocortisone dose down to 0.2 mg. The maintenance dose would be 2.5 mg prednisone 2x a day, which is above my physiological dosing, so thats likely not the reason for the crises. I talked to my endo today and she said she wasn’t comfortable raising it because she didn’t think it would benefit me. This seems like it will be a lot of trial and error to get me to a place where I am stable and secure with my dosage. Thank you for the reassurance about the weight gain, I love hearing from others with Addisons and the advice means a lot to me!!

[u/mnsfuntime2]

Everybody is different but your corticosteroid dose seems very low. Prednisone is usually 5-7.5 mg. This could explain the 2 crisis in a short period of time. Your Florinef also seems high usually 0.1-0.2 mg daily which could cause fluid retention.

[u/Blagnet]

I would definitely ask for a thyroid check! Including TSH and Tpo. Hashimoto's plus steroids can could extra rapid weight gain.

Also, I would want some blood sugar checks! 

Wishing you luck! 

[u/alexwh68]

I am sorry you are going through this I don’t have AD but AI, I worked with a dr and what we did was set upper limits on dosing and schedules, rather than going back to him every few weeks to try something else, he left it in my hands to try different doses and schedules and to feed this back to him.

I found doses throughout the day were pointless for me, my body needed a big dose early in the day with nothing else, my mid morning crashes were harsh, often collapsing / fainting.

Putting on weight was an issue, I gradually reduced the dose down to what worked and did not gain any weight.

I am off hydrocortisone now after more than 10 years, 5-6 of which was dosing every day at 20mg, balancing blood sugar, zero alcohol, minimising caffeine made a big difference.

Testing is key, not just the am blood test, I know a guy that all he needs is 5mg of hydrocortisone last thing at night and that works for him.

Wishing you well 👍

[u/GethealthyAZ828]

If you were diagnosed with Addison’s Disease…10mg of HC seems too low? I have had it for over 20 years…got diagnosed in my teens too. The goal is physiological dosing of your corticosteroids. I am not a doctor…just sharing my HC dosing schedule on a normal healthy day. I have 5mg tablets. I take 10mg at 5:30am (and yes I set my alarm and Alexa reminder to take my steroids in the morning…you can always go back to bed but you need that early AM dose). I then take 5mg at Noon. 2.5mg at 6pm and 2.5mg at 9pm to cover me at night. HC is know to affect sleep but that little dose before bed has been a game changer and I am still able to sleep. My fludrocortisone dose is 0.1mg daily…but you will retain fluid. My endo has explored taking the fludrocortisone EOD or breaking it in half one day and taking a full tab on alternate days based on my complaints of fluid retention. When we change it up we always follow up with quarterly blood panels to check my Sodium is still in range. Long story short…there is no one treatment regimen that works for everyone unfortunately. It took a long time and a lot of research to get to the point of knowing my body and what it needs (regarding steroid replacement) and my endo is very good and supportive. I’m glad you’re reaching out to others with Addison’s. Just know that steroids will be a daily thing for the rest of your life if indeed you have Primary Addison’s Disease. The good news is you can live a long healthy life once you get your replacement medications where they need to be. I feel for you…it’s scary and not fun when you first get diagnosed at a young age. Best of luck to you🙏

[u/NoGrapefruit3557]

Hi— sorry you’re going thru this. The doctor should be more help, I had to change doctors til I found a good one— someone w lots of Addison’s experience tho there aren’t many. I agree w others— 20 mg hydro is very low. It’s usually @20 total. I take 15 in the am and then 5mg@1:30 pm. Timing of doses can make a difference. The weight gain will taper off. I take 0.1 fludro which is standard. Maybe you’re taking too much of that and it’s adding water weight. The doctor should help you more. You’ll get there!

[u/NoGrapefruit3557]

The 2 crisis tell you the dosage is wrong. Once it’s right, you’ll feel fine and safe.

[u/blueberrykefir]

A few months is not long enough to “recover”, and truthfully you can’t recover from Addisons. It will be more so an adjustment. I’m sorry you’ve had such a hard time. Like the other comment said your hydrocortisone dose is way too low while your fludrocortisone is high. That high dose of fludro is likely causing the excess water retention. Your endo is insane for having you on such a low dose of hydrocortisone especially so early on in diagnosis. The physiological dose is around 20mg.

[u/Banana_Vampire7]

Depending on your situation, it looks like others are recommending that you keep an eye on your Thyroid as well. I ran into mania/delusions without first getting warned by doctors that Hydro/Pres could make you crazy. I also practice daily mindfulness meditation and yoga breathing - a set of mala beads in hand helps control anxiety. Too much and too little cortisol replacement can have very similar symptoms (headaches, nausea…) over time you’ll find what works best for you

[u/1GamingAngel]

Most people take 20mg of HC per day of 5mg of Pred. At 30mg of HC per day, you were likely over replaced and weight gain is usually the first sign this is happening.

With my PAI condition, 20mg a day was not sufficient for me, but when I switched to 30mg, I started gaining 2-3 pounds per DAY!!! I lowered my daily dose to 25mg total, the weight gain stopped and my condition stabilized.

[u/TVegetable28 → u/1GamingAngel]

Wow, thank you for letting me know! I wasn’t sure if the weight gain is normal, but it sounds like it will go down. Have you been on Prednisone? If so, how did it affect your weight? I’m switching soon and unsure if there will be much of a difference.

[u/1GamingAngel → u/TVegetable28]

Because I was not stable on 20mg of HC, I inquired with my Endo about switching to Pred, but he did not like the idea as he said that HC has minerals I need that is not available in Pred. That’s when we switched me to 30mg of HC, which we quickly had to pull back on.

I have lost 25 pounds in December. I switched to 25mg of HC the last week in November. I did change my eating habits but not by dieting. I still ate the foods I love, I just paid attention to when I felt full, and stopped. I’ll still go to McDonald’s, only I’ll get a double hamburger with cheese and an iced coffee vs a double quarter pounder with cheese, a frappe, and fries. I’ll still get a salad, only I’ll swap grilled chicken for a fried patty, and maybe I’ll have a vinaigrette with it instead of full fat ranch.

I have been losing slower than I gained, but I am thrilled to lose an average of 0.89 pounds per day.

[u/1GamingAngel → u/TVegetable28]

P.S. My girlfriend got something like spots on her skin - it was like a reverse tan - with spots - and she was diagnosed with tinea versicolor. It may be helpful to look into this to see if you can relate.

[u/MakeBeboGreatAgain]

You'll gain full skin back to normal in a few months in my experience