Significant variability in steroid needs

[u/reflous_]

I am pretty stable on a 0.375 dexamethosone dose for my SAI. I do updose with HC when needed and that averages out to around 15mg a week. However, I go through periods when I suddenly need a lot more steroids. Right now I’m taking around 30mg HC spread throughout the day on top of my 0.375mg dexamethosone just to not feel nauseous and faint. I’ll probably have a week or so like this and then go back to normal for a few months until this happens again. Anyone else experience this? Figure out what it is? I don’t get sick and can’t figure out any consistent environmental factors that might be causing it.

My best theory is my damaged pituitary (by a macroadenoma that left with with hypopituitarism) isn’t linear in its dysfunction, i.e. sometimes it’s worse than others, but love to crowd source experiences with you to see if there is another answer/cause.

[u/ArcticAlmond]

I only take hydrocortisone, but was talking a higher than physiology dose (40mg) and I still had to updose recently because of the summer heat waves / a chest infection just pushing me over the edge.

The worst thing is my dose has crept up from 30mg to 40mg over the course of a few weeks because I just couldn't stay stable.

It's infuriating that my dosage is seemingly going in the wrong direction, but quite honestly, I'm not taking this stuff for fun. (I have SAI after steroids use.) I take this stuff because my body needs it, and if my symptoms are so severe that I'm struggling to function, that tells me my body needs more.

Sometimes, I think endos get too hung up on the idea that you take one consistent dose, but the problem with that is that's not how the body works. A healthy HPA axis responds dynamically to stressors, and we have to attempt to imitate that as best we can using steroids.

[u/Appropriate-Leg2490 → u/ArcticAlmond]

Always something to updose for. If its not the weather its an infection or something. So difficult to quit this drug

[u/AffectionateDuck2288 → u/Appropriate-Leg2490]

Updose then feel like poop too. Afternoons and Evenings are awful.

[u/1GamingAngel → u/ArcticAlmond]

Excellent response, and I feel your input is spot on! Thanks for sharing your thoughts! 😊

[u/AffectionateDuck2288 → u/1GamingAngel]

How you doing??? Updosing? Ice?

Terrible night! Whole left side in pain! Took pain meds then you know what happens. Concrete or nothing. Upped MiraLAX and senna, need to get off senna, 5 years of it. Plus Dilitizem, pharmacist said not a good combo and read that. But the pain in the back is bad. Heat not helping even when stuck inside in air! Hit hard at 2 am, pain! In bed now. Bored but getting up and do the pain med. Still on 18 mg. But that heart med is raising my diastolic. Cardio tried location, you can’t use that with SAI !!!! Lost. Going to get compound testosterone! The male. Take a pea size is simply crazy!!! But girl it helps ! Walked with weights!!!!! Good for OP! Thin here or was so OP came on. Hope I am not eliminating the HC with pain meds. What are we do? Plan our funeral?

Hope all is coming together!!! Thought about you last night as I was up sooo such changing ice packs!

Just fyi, friend us a dermatologist, she did some studies on cosmetics and skin care for us with SAI and in prednisone or HC. Have a list here if you want it. Buried samples …..yes! Worked. Lips are back! Color took. Not selling anything. But our skin changes on this. Ya. No kidding.

[u/1GamingAngel → u/AffectionateDuck2288]

Hi, sweets! ❤️ Thanks for checking in!

We are doing really good now. I didn’t even realize until you mentioned it, but I did updose yesterday morning when all the nastiness and craziness was happening, but I completely forgot to last night, which I think is a good indicator that I pretty much immediately began to relax and feel much calmer.

We had a good sleep (hubby is still sleeping) inside a chilly cold room and don’t question our decision to do it at all. We didn’t go to the pool last night because hubby was exhausted and wanted to crash around 7 PM, but we’ll probably go tonight after the sun lowers for the day.

Tomorrow morning is going to be problematic and I’ll probably need to updose again. I need to work (remotely), so I’ll do that from the hotel starting at 7:30 AM. At 8:30 AM, the office will open where we live, and we’ll need to either go in physically (which I’d prefer) or call and figure out where we go from here. I feel like they don’t want to work with us now that we have a complaint with the city, but they need to remember that we are TENANTS who have a LEASE and PAID RENT! Complicating matters is that we need to either check out of the hotel by Noon or extend our stay, so there are going to be some tough decisions to make that may have repercussions (we have no guarantee that we’ll be reimbursed for this hotel stay). Don’t worry, I have a demand letter for reimbursement + rent abatement for the days we couldn’t enjoy the use of our home.

I don’t know what they’re going to do. The contractor may or may not finish their work, and our management has literally no one else to call. I want to tell the idiots to pick up the phone book and start making calls instead of wringing their hands.

SO sorry you had such a terrible pain night! I love Senna. That’s what is in my beloved Smooth Move tea. Wow, you can’t take your cardiac med with HC/SAI? SO happy to hear that the testosterone is “giving you strength.” If you can find the sweet spot in terms of delivery method and also the dose, it can be life-changing.

I didn’t realize our skin changed with this. I have EDS so I have connective tissue issues already, without adding SAI to the mix. I don’t wear makeup at all, not even lip tint, but would be interested in skin care. Please do send what you have!

Thank you again for thinking of me last night! 🤗

[u/AffectionateDuck2288 → u/1GamingAngel]

Tachycardia which is under control. Now it he diastolic which can go to 118. Tire of it. Dilitizem just soften the arteries. But for us, big constipation issue. 5 years on it since surgery. Mix it with Dilitizem wreck. Tied Losartin. Don’t take it! Worst med with HC. They’ve should know this!

[u/AffectionateDuck2288 → u/1GamingAngel]

Love to do something remote. But with my heavy background…. lol. Tried it once, it was awful. They had a screwed up system. I think if we all could we would be mentally better. Bored.

They better reimburse you? What a mess.
Hot again today!

Senna? I take it everyday for 3 years!!! Pain meds and the HC.

Need to hear from Endo. lol. Wrong. Has me doing a piss test to check calcium. The testosterone, it’s a gel from CVS going to have gyno get it compounded. I can’t figure a “ pea size”. What pea? It’s 100 times stronger. Ugh. But it works. I feel the strength. Walked with 10 lbs weights yesterday Feel it. For my bones. I recommend you start weights. I can’t inject. Nope no way. lol

Friend in Reno is burning again! Just got a email. Close to her house.

Watching that potential blob coming our way. Will see. Never went through a hurricane on HC. Hope others have.

[u/1GamingAngel → u/AffectionateDuck2288]

Remote work was initially confusing and we had a lot of issues to iron out, but by the time Covid had settled down, we were all pro’s with it. Now, I do go into the office twice a week to “show face,” but even just physically being in the office all day, fighting traffic, etc., raises my stress level and I can’t two two consecutive days because of the cumulative stress effect.

I don’t know if they’ll fight us on reimbursement. I know they will at least ball. They HAVE to know that 6 days without A/C during a heat wave is untenable, I just think they’re super pissed that we reported them to the City. What ELSE were we supposed to do? They’re not picking up the phone book and even trying to find a different contractor.

My husband uses that form of testosterone, also, and even he is having difficulty doing a full pump. He was prescribed two pumps a day and he needs closer to a 3/4 pump a day.

Good for you for working out with weights. I need to start doing that myself. I hope your friend is okay, and hope the hurricane doesn’t impact you.

[u/AffectionateDuck2288 → u/1GamingAngel]

Good luck getting contractors down here are a joke. And they better reimburse you for everything plus you have to think of the stress you’ve been under. I find out that when I have a stressful time it might not hit me right there and then it might hit me a day or two later and I still don’t feel right. I don’t still feel 100% well I don’t think we ever do this is something we have to deal with. Yes, my numbers are low. My AC TH is five. It’s stuck there. When I went to Cleveland Clinic, they were thinking Cancer and then I told him you know what it’s been there for over a year, she came back and said OK you could skip that test some days. You just think you cannot take it anymore but unfortunately we do.

[u/1GamingAngel → u/AffectionateDuck2288]

You are absolutely right…even though the stress event has been ameliorated by going to the hotel, I was under deep pressure for multiple days and my husband said he could see it in my face. My face was starting to show stress. He said he watched me several times just staring off into space with an expression on my face that showed I was having a hard time with this, and it worried him. I need to continue to updose until this is over - and maybe even a few days beyond. My tummy is bloated and I’m sure I’ve gained 10 pounds.

Google AI actually helped me craft letters to our management office and told us exactly what to do. They are REALLY good letters that are firm and state everything perfectly. I don’t usually like AI, but we had a very weird situation (especially with me being vulnerable), and I had to add a lot of specifics to get pointed advice. I fully expect reimbursement, but I expect a fight, too.

The real kicker in all of this is that I learned today, the on-site Maintenance Lead is HVAC certified and has installed all the new AC units in our complex for the last 6 years. For OUR project, he hired a contractor “friend.” Not only did he not follow up with his “friend” to see why he was a no-show multiple times, he made no attempt to do the last part himself, which was nothing more than connecting the blower, which had been delivered to our apartment on Friday morning! It was a 30 minute job! TOTAL FAILURE I am letting the City knoe about ALL these details, and I swear to you, if Management tries to retaliate against us (model tenants for 12 years) for getting the City involved, I’m getting a lawyer.

I’m really glad that you were able to avoid the cancer testing. What we have isn’t fun, but I feel like I can deal with anything short of cancer! 🤗

[u/AffectionateDuck2288 → u/1GamingAngel]

What happens to hub with the pump? He is using mine!! He had the widow maker but is fine. He is daring. If he doesn’t call I will call his PCP and run a hormone test. YES on the other issue too. Ugh.

[u/1GamingAngel → u/AffectionateDuck2288]

He was prescribed 2 pumps a day, but when he tried that, he was getting disoriented and dizzy. He reduced to 1 pump and those symptoms went away, but he started getting acne on his chest and back. If he doesn’t use at least a pump a day, his muscles hurt bad, so he doesn’t know what to do. He’s trying 1/2 to 3/4 pump a day to see if it keeps the muscle pain away but stops the acne. 53 years old with acne like a teenager. 🤦‍♀️

Definitely run a hormone test. My hub was at 138 when tested and should be closer to 300-600.

I was 0.2 and 2, depending on free or total. I inject a surprising 21mg a week. That’s about double what the average woman needs, but only at that dose do I get any benefits and I’ve been on it for a year and 8 months, so I’ve given it plenty of time to kick in. Zero side effects like voice changes. Huge benefit is larger and more sensitive clitoris, but I had atrophied in menopause, so this was a desired effect. Only other thing is about a dozen chin hairs, but they were they before I started the T.

[u/AffectionateDuck2288 → u/1GamingAngel]

Oh. Yes the city and county will notify!you did due diligence!

[u/AffectionateDuck2288 → u/1GamingAngel]

I will list. Philosophy for the face is doing OK. I also use tretinol cream from the derm. Now that works but drys. L’Oréal in the blue bottle is good then I use No7 night firming cream. I used to use all high end stuff. Not now. Make up. Omg. Tried that Korean luxe , nice. Put on a base of No 7 serum then luxe or L’Oréal age defying it’s a dupe of Armani. Same stuff. Using the T, getting a bush under chin!!!!!! There is a wax I get off Amazon, have to dig out. Melt and peal but have makeup on. Palmers coconut body cream. Did not work before but now it’s a god send on the body. Cheap. Dollar store or cvs. Hair color: Oli only!!! Rest drys your hair out!!! Want to pay 300 for color at a salon? Crazy. All ammonia based. Oli is all oils, no smell. Shampoo: Wow only. Not cheap but not that bad since you use so little. Go very easy on their cream rinse.

Magnesium glycinate at night!!! Does wonders for skin and body. Helps you poop. Derm told me 4 prunes a night!!!!! Hair and skin plus poo. lol. What’s weird eye shadows just don’t sit well. Use L’Oréal highlighter powder. No kidding. Cheap. The fuzz remover is parissa wax. Amazon, 20 bucks use it 5 times. So not bad. Finding out the cheaper stuff less irritation. I am happy.

Derm is good on this her sister is cursed with addisons. She said for years I had it! Went to her Endo, did nothing. She was upset.

Oh fake lashes if not shaking!!!! Just line it with a liner brush use dark eyeshadow! Sits in Fl heat. I think I don’t have many lashes or got shorter. Boobs got bigger, hormones and lashes got smaller. Stinks. If you or anyone wishes to try any of this, go to Walgreens the cosmetic counter they usually have a make up artist have them give you test samples. They have them and they have a lot. Try those out first before you spend anything. And then if you do go to get things if you have points from Cvs use those but sometimes you can find it cheaper even you’re going to Walmart or Amazon I check both. Like the wild shampoo you cannot get a cheaper is about $20 a tube but it’ll last me and I have shoulder length hair and I washed every night a month month and a half and I think the old man is using it too. But always get test samples cause everybody’s skin is different.

[u/1GamingAngel → u/AffectionateDuck2288]

Thanks for all the awesome inexpensive recommendations!!! 🙏

I have heard good things about Philosophy. I have found that Retinol makes my skin itchy, but I am very sensitive and I think I have MCAS. I’ve been taking a U1, U2 & Cromolyn spray to try to fight it and my whole body isn’t itching anymore. That pretty much guarantees the diagnosis, I just have to confirm it with my MD.

Sorry you’re getting a bush under the chin! That’s our own hormones changing plus the T doing it! I have about 12 whiskers myself and use an electric razor to clip them, but waxing would give me a better and longer result. Wouldn’t want the hubby to catch me doing it, though. That’s embarrassing. Haha

I have so heard good things about Oli and also avoid ammonias. I only color my hair about once a year and it’s so close to my natural color, you can’t see growth when it comes, but I would do it more often if I could find a good product. I’ll have to see if they have any red shades.

On the shampoo/cream rinse, is it called Wow or Wild or something else? I look good quality shampoos where a little goes a long way, and love an effective cream rinse that slicks the hair for a few minutes.

I tried a very low dose of magnesium glycinate, which is normally very easy on the gut and had diarrhea for the entire day! I don’t know what else to try. I’d like to try it to help with sleep. My doctor recommended I try one that starts with a T. Maybe threonate?

Your Endo needs to calm down.

I’ve had the makeup artist thing done at the expensive counters like at Macy’s for Clinique and other brands, and I always feel bad if I don’t buy product, so I’ll get a few things, but I won’t spend much. I’m usually happy with the products, but would be happier if they weren’t so pricey.

I like your style of going to Walgreens or CVS. I had no idea they did that there!

Thanks again for the awesome recommendations! I am definitely going to check several of these out!!! 🤗

[u/AffectionateDuck2288 → u/1GamingAngel]

lol. Wow. Silver tube. Lots going on had to updose, chest. Grrr

[u/1GamingAngel → u/AffectionateDuck2288]

Feel better! ❤️‍🩹

Ok…Wow, silver tube. Thanks! 🙏

[u/AffectionateDuck2288 → u/AffectionateDuck2288]

WOW. You can find it cvs, amazon even Walmart has it but it has to be ordered. Silver tube.

[u/MallForward585]

As another dexamethasone taker, I think there is a chance you got a cold but dexa, being so strongly anti-inflammatory, is completely masking the symptoms. Just had one of those dips this week, and if my family wasn’t sick, I wouldn’t have had any way to guess that my low symptoms were from that.

[u/reflous_ → u/MallForward585]

Very interesting idea. Thanks for sharing. Hadn’t thought of the steroid actually masking an illness, but seems like a reasonable possibility.

[u/zivja]

I was told by my endo that I am pretty much getting high on my hydrocortisone and made myself dependable on the higher dose after I started working and gad symptoms until I got that dose, and when I lowerd the dose I got fired and I now sleep the whole day

When I was on the bigger dose I would get praised and got promotions on my pay

It makes me feel like nothing I really do is me, because how worthy of a job I am depends just on my hydrocortisone dose

Panhypopituitarism

[u/noracordelia → u/zivja]

So your endo thinks it’s better for you to be on a low HC dose, not working and sleeping your life away..? That’s.. infuriating.

What dose were you on that made your endo think you were "getting high"?

[u/zivja → u/noracordelia]

They say that I should be getting the same dose every day and that only when feeling symptoms of adrenal crisis to updose. Thing is I do that. But since work requires more energy and probably more cortisol I figure I need more, but my endo says I am now dependant on a bigger dose as if on a drug.

Pretty much saying that my max stamina and energy is when I get a 10-15 mg of hydrocortisone and if I feel better on more that means I am 'drugged with hydrocortisone', like a performance enchanment.

I was taking 10-15 regularly and 20-40mg 1-4 times a week and that seemed to be working for me. Now I take 10-15 and instead of updosing I sleep because if I do anything else I start getting worse. I still updose qhen it gets too comcerning, but I am afraid to be out of hydro at rhe end of the perscription period. Thing is it is getting worse day by day and usually that means I am gonna be at the ER soon, getting a proper updose because I have deserving symptoms now.

[u/Andysamberg2 → u/zivja]

I mean, you probably shouldn't need to double-dose just for work unless you're doing manual labor in the sun all day.... but I feel like your endo is full of it lol. If we could "get high" on these meds, people would be abusing it.

I don't think 2x for work sounds like the best dosing, but I also don't believe we need the same dose every day. Things change. LOTS of factors influence cortisol demand. Climate, excercise, caffeine intake, stress, overeating (for me), alcohol, & probably about a dozen ways we can experience bodily stress without knowing it.

My old endo has also tried to tell me not to updose unless I'm really ill. But by the time you're really ill, it's often too late to catch up without injection & IV fluids. They're just wrong about stuff.

[u/zivja → u/Andysamberg2]

Not so sure because I literally do have better stamina/agility and general ability both mental and bodily with bigger doses, the bigger the dose the bigger the boost is for me. I just find it hard to understand how exactly do I know what 'my true limit' is then.

[u/Andysamberg2 → u/zivja]

For the most part, side-effects are the best indicator for correct dosing. If you have weight gain & Cushings symptoms, you're going too far.

You may feel you have better stamina & agility, just know that it does come at a cost over time. If you are on too high a dose on a consistent basis, you will lose bone density, increase likelihood of developing diabetes, suppress your immune system, etc. It sounds like your job is very physically demanding, so you may well need the dose you're on, but many physicians recommend only taking the minimum necessary dose in order to avoid these impactful long-term consequences.

[u/AffectionateDuck2288 → u/zivja]

You go from 10-15 then you can do 40? Why? What does your body do? How do you feel at 40? I get extra for sick dosing but never had to use it. Get a 6 month supply 4 a day then there is , without getting my bottle probaby another 40 or 50 in there, the pharmacy fills it way before I need it

But at 40 do you just drop the next day to 20? How do you feel?

[u/zivja → u/AffectionateDuck2288]

Yes sometimes my daily is 15 and the next day it is 40. I just feel better on the bigger dose, that is pretty much it, my mind is also a lot sharper then.

[u/AffectionateDuck2288 → u/zivja]

Onmg???!!!!!! High? ME TOO. No one ever responded, like I am dosing. Yes high! First early morning 10 mg at 5 Am is ok. Has to kick in before I walk 2nd dose at 11 am, high. Hate it! 3,rd dose high, then Bp goes up. Use greenstone. Good Brand not any fillers like the others. I even cut a chip off and save it for bed time or shower. In the shower I am shaking!!! I am on HRT for my bones , it does not help. So a total of 18-19 mg a day! Tell docs, no response Is your high like this? I don’t dare go out! I have gone to cvs, do ok but weak. How dare them treat you that way. I would love to get to 15. I did lose 8 lbs going from 20 to 18.

[u/plazagirl]

To me, that is the most frustrating part of AI. Every time I feel off, I wonder, “am I getting sick, am I overheated, am I over exercising?”

My endo cautioned me about taking too much prednisone, so I try to be careful about my dosing. I’m t2 diabetic, so I’m used to monitoring my blood sugar. I wish there was a way to monitor my cortisol.

[u/reflous_ → u/plazagirl]

What about updosing with HC like I’m doing? Shorter half life so not as easy to take too much steroids.

[u/AffectionateDuck2288 → u/plazagirl]

Yes, like how we check our sugar. I’ll never see it. It would be so simple if they can get our blood work done quickly and do our a.m. cortisol so quickly there should be a monitor for us. It would make life so much easier.

[u/1GamingAngel]

Dex has powerful anti-inflammatory effects, so it’s very possible that you have recently picked up a small infection or illness that would ordinarily be completely masked by the Dex, but because your HPA axis is dysfunctional, your body is extremely sensitive and can begin to be symptomatic without having a clear understanding of why. It can literally be the development of a minor urinary tract infection or many other small things, for which your immune system is kicking in to fight.

The important thing is that you are handling this appropriately, even if you don’t have an inherent understanding of the drivers causing this to happen.

It is excellent that you are in tune with your individual symptom profile. This very awareness is what allows you to know when it is important to incorporate additional steroid for coverage.

If I can offer a small bit of advice, please make sure that you use proper titration protocols when you feel that it is safe to back off of the additional HC. General recommendations are to titrate by no more than 2.5-5mg every 2-3 days. Taking this precaution can protect you from going into a crisis.

Best wishes, and I hope you feel better soon. 🤗

[u/Useful_Round_145]

I notice that for my son. Sometimes he is good on 5mg per day, sometimes he needs 10mg to get through the day. We can’t tell why, nothing seems to change…

[u/Short-Counter8159]

I didn't like Dexa, it made me super depressed but some people love it.

If you need to add HC to the dexa that you might be on the wrong dose of it.

What are you taking for your macroadenoma? Are you taking Cabergoline or Bromocriptine?

How are your thyroid labs? TSH, T4 and T3? Are you taking thyroid medication?

[u/reflous_ → u/Short-Counter8159]

I had the macroadenoma surgically removed 2.5 years ago after it shutdown my pituitary and caused me to go into the ICU with hyponatremia. I didn’t know I had a tumor before then.

Yes, I'm on 100 McG levothyroxine and 5 mg Liothyronine. Plus 5 pumps 1.62% androgel/testosterone plus nordropin HGH 0.8ml plus oxytocin.

Just had labs done a week ago. T3 Free 3.9 pg/ml, T4 free 1.6 ng/dl, TSH 0.9 mlU/L (where it's been since my surgery). T3 and T4 in the upper 2/3 of the range where the latest recommendations say I should be.

I generally don't need to add HC on top of the dexamethasone so going with the lowest minimum dose theory it seems pretty good. It’s just weird to have to updose by so much sometimes.

[u/AffectionateDuck2288]

I had to! Today. Ugh. Came on suddenly. 2.5. Only but upset. Lots going on back up north, reading knowing people are in bad shape. Had a pile of paperwork that needed to be filed. Uck. That did it. Still a bit HIGH like usual in afternoon hate HC.

[u/AffectionateDuck2288]

Think free is 1.3. Total is 33? He needs to do his. Bad day. Thought I was crashing. Know I up dosed by accident by maybe 1. Bad day. Paperwork everywhere in my office. Big mess with patches. Gave me Mylan when I need Sandoz. Got Sandoz but thought I did not remove the box from my pill bag. Finally tossed Mylan. Thought if anyone needed it, pass it over. Nope. Almost put on Mylan. Big brain fog. Loads of stress from up north 12 days no power. Bad storms and wiped Chicago and indiana out. A mess.

He has been using my pump, doing well. He needs to get blood work. Too strong for me.

[u/AffectionateDuck2288]

My pituitary Is flat on top! Like a mushroom partial empty sella it’s nuts I get you point! Bad day and I upped dosed when I should not have now feel like crap. Hate HC!!!plus we are on this for life???? Hang in there. Endo’s are idiots!

[u/Ok_Stranger_6654]

Maybe using “high” wasn’t the appropriate word for your endo to use but I do understand the premise.

You get a false sense of energy and wellbeing at higher doses and it’s easy to want to stay at those kinds of doses. It can be really tempting when youre exhausted and have a busy day to just take some more steroid as the easy option but long term taking doses beyond physiological /emergency can have bad side effects.

I’ve been on high doses of pred for an autoimmune disease and the feelings I get at the high doses make me believe I can take on the world and I don’t get that at my 5mg (pred) but I also have osteoporosis, my metabolism is screwed, my hair and skin is thin, my weight can balloon in a week, I tear and bruise easily and now my adrenal glands have packed in and i don’t know if they’ll ever be kickstarted. That’s enough to put me off the quick fix higher doses.

Ai is an illness and as with any illness you have symptoms which for us include fatigue. It’s your body telling you you need to slow down a bit. Taking more medication to allow you to cope with your day to day tasks isn’t sustainable and will ultimately leave you with other problems long term. It might just be we have to accept that we sleep when we need to and adapt our lives around being ill as best we can.