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Replacement Steroid
I would like to know how it is possible to know when is a good time to begin to taper from replacement steroids? (following an adrenalectomy and trying to stimulate the other adrenal gland to begin functioning again).
Is it a matter of time? That seems arbitrary.
Is it a matter of some test for cortisol level? Not sure if there are any tests that would be accurate while on a steroid replacement.
Also, in addition to the replacement steroid, currently Rx'd at 40 mg per day (20mg AM and 20mg early PM) should I ask for an emergency/stress steroid? Or is 40mg considered to be a stress level/amount because of the stress of surgery?
Is it a matter of time? That seems arbitrary.
Is it a matter of some test for cortisol level? Not sure if there are any tests that would be accurate while on a steroid replacement.
Also, in addition to the replacement steroid, currently Rx'd at 40 mg per day (20mg AM and 20mg early PM) should I ask for an emergency/stress steroid? Or is 40mg considered to be a stress level/amount because of the stress of surgery?
1 - I know I could see better after pituitary surgery (and my ear ringing went away for a time) and I think that the same happened for a time after my adrenals - but I felt it was more, in my case, to a drop in cortisol since mine was so high to begin with...
2 - you may be having some hypertrophic scarring. My scars ALL do this (bleah) so I have all lumps from ALL my surgeries (except the muscle biopsy where the plastic surgeon closed so nicely that one is flat - but still purple).
Just give yourself some recovery time - then you can be back to full speed, speedy.
2 - you may be having some hypertrophic scarring. My scars ALL do this (bleah) so I have all lumps from ALL my surgeries (except the muscle biopsy where the plastic surgeon closed so nicely that one is flat - but still purple).
Just give yourself some recovery time - then you can be back to full speed, speedy.
I agree, dosing the steroid does seem to be a bit of art and science.
Today I am going to take 35mg (25mg AM, 10mg PM). Thank you for your suggestion to take the PM dose around 3 o'clock.
I know you can't recommend the amount I take, but your links to the information on stress dosing/health pages has been very helpful. And your personal experience, to me, is priceless.
I would like to try alternating 30/35mg for a few days. I see the endo tomorrow, Wednesday, and hope to confirm that and get guidance on where to go from here on.
Thank you for your concern over my activity level. I knew at the time it was probably too much, but I didn't and don't have hardly any pain.
I thought I would feel poorly afterward, but I didn't. I have far much less pain with this surgery than I did with the appendectomy. The difference could be the HC. You made a comment earlier that you felt you could throw people around like the Hulk. hee hee. I guess that is how I am feeling, in a different way.
There are two more questions I have. I will ask one of the endo, and one of the surgeon, but I would be very appreciative if you have any comment/experience on these questions:
1) have you, or do you know of anyone who has experienced a visual change while on HC?
I wear glasses, progressive lenses and really never have been satisfied with them, I'm always bobbing my head to get things clear. But now it seems like I am always trying to get that sweet spot, maybe especially after taking the AM HC dose, maybe I fell asleep and bent my glasses slightly, or maybe it's just my imagination. But I've also noticed that the whites of my eyes are whiter, and my eyeballs are smoother. I know that sounds funny but I used to have little bumps and what looked like scarring and I was told was just reaction to dust and dryness. That seems to be gone.
Just wondered if you had any comment on vision change with steroid.
2) My external incisions are almost healed over, and like I said I have no pain, but I do have quite a firm lump above and to the right of my belly button. I'm thinking it is disrupted and healing tissue from the adrenalectomy but it is more on the right side and they took the left adrenal. So just curious if you remember having any similar areas after your surgery. I don't like lumps and bumps but I do know there will be a certain amount of scarring and adhesions and temporary inflammation. (its not red or warm or painful)
I will try to tone it down a bit with the activity. I think its just my nature and that is hard to change. Hopefully I will become more mellow after all of this is done and with only one adrenal remaining, maybe I will be better at half speed.
Today I am going to take 35mg (25mg AM, 10mg PM). Thank you for your suggestion to take the PM dose around 3 o'clock.
I know you can't recommend the amount I take, but your links to the information on stress dosing/health pages has been very helpful. And your personal experience, to me, is priceless.
I would like to try alternating 30/35mg for a few days. I see the endo tomorrow, Wednesday, and hope to confirm that and get guidance on where to go from here on.
Thank you for your concern over my activity level. I knew at the time it was probably too much, but I didn't and don't have hardly any pain.
I thought I would feel poorly afterward, but I didn't. I have far much less pain with this surgery than I did with the appendectomy. The difference could be the HC. You made a comment earlier that you felt you could throw people around like the Hulk. hee hee. I guess that is how I am feeling, in a different way.
There are two more questions I have. I will ask one of the endo, and one of the surgeon, but I would be very appreciative if you have any comment/experience on these questions:
1) have you, or do you know of anyone who has experienced a visual change while on HC?
I wear glasses, progressive lenses and really never have been satisfied with them, I'm always bobbing my head to get things clear. But now it seems like I am always trying to get that sweet spot, maybe especially after taking the AM HC dose, maybe I fell asleep and bent my glasses slightly, or maybe it's just my imagination. But I've also noticed that the whites of my eyes are whiter, and my eyeballs are smoother. I know that sounds funny but I used to have little bumps and what looked like scarring and I was told was just reaction to dust and dryness. That seems to be gone.
Just wondered if you had any comment on vision change with steroid.
2) My external incisions are almost healed over, and like I said I have no pain, but I do have quite a firm lump above and to the right of my belly button. I'm thinking it is disrupted and healing tissue from the adrenalectomy but it is more on the right side and they took the left adrenal. So just curious if you remember having any similar areas after your surgery. I don't like lumps and bumps but I do know there will be a certain amount of scarring and adhesions and temporary inflammation. (its not red or warm or painful)
I will try to tone it down a bit with the activity. I think its just my nature and that is hard to change. Hopefully I will become more mellow after all of this is done and with only one adrenal remaining, maybe I will be better at half speed.
Let me put it this way - some people take extra doses for physical and mental stress - um, quite often... I was told by my doc to avoid this as to do this too often, I would just give myself the Cushing's back in pills that I just removed in the glands.
Taking the pills is kinda art, kinda science - too much is bad, too little is really bad.
But doing all those projects after abdominal surgery! You do realize that you have stitches on the inside! I would take it a bit easy... Move up the time of you PM pills to 3pm...
I will not tell you what to take as you have to work that out with your doctor and you need to heal. But try to take some of that physical activity down a notch - you still are healing... they moved all your organs to get to the adrenal...
Taking the pills is kinda art, kinda science - too much is bad, too little is really bad.
But doing all those projects after abdominal surgery! You do realize that you have stitches on the inside! I would take it a bit easy... Move up the time of you PM pills to 3pm...
I will not tell you what to take as you have to work that out with your doctor and you need to heal. But try to take some of that physical activity down a notch - you still are healing... they moved all your organs to get to the adrenal...
Well, I think my body is a little deceived by the extra cortisol (hydrocortisone) in my system because I seem to have very little pain.
Right now I feel the most discomfort in my wrist where they had the IV line, oh, and when I cough or sneeze, then I feel the abdominal incision.
I did ok on a taper of 50mg Friday to 40mg on Saturday. I started doing a small renovation project painting a door casing so I knew I was too wired.
On Sunday I tried 30mg. That also seemed ok, but I still felt wired and was out doing a little yard work.
It seems hard to hold myself back even though I know I need to heal.
I'm going to try 30mg again today ( 20mg AM and 10mg PM) and see how that goes.
I don't have ANY trouble going to sleep, in fact I feel quite exhausted by 8pm. If I wake up during the night I have trouble falling back to sleep, my mind just won't stop. However, that has always been the case. Taking HC doesn't seem to have changed that at all.
I believe that the stress dosing information you linked to me suggests an extra 5mg for minor mental or physical stress, and an extra 10mg for more serious mental or physical stress until resolved.
The Rx of 50mg seemed way too high and I didn't want to be on that for long. I think 30-40mg during recovery seems more appropriate. Maybe 35mg would be a compromise.
Doctors must hate people who self diagnose, self treat, self medicate etc. But on the other hand they can only offer recommendations and monitor for response. From reading some of the posts in this forum and on other medhelp forums, doctors get it wrong sometimes.
I think my endo is a good one, but I also had to ask for many of the previous tests I got. Since even just the timing of serum cortisol tests seems to be lost on most of them, a healthy skepticism or questioning mind isn't that bad to have.
That all being said, I agree, think I have pushed the taper a little. One day at 30mg is not enough to guide me, but if I continue to feel ok at 30mg I'll stay at 30mg for awhile before I try another taper. I'm just anxious to know if my remaining adrenal gland will begin to function.
But I have to keep telling myself its not a race.
Thanks for the info on what is included on the path report. I will ask for a copy to see if they checked whether the cells were secretory or not.
Right now I feel the most discomfort in my wrist where they had the IV line, oh, and when I cough or sneeze, then I feel the abdominal incision.
I did ok on a taper of 50mg Friday to 40mg on Saturday. I started doing a small renovation project painting a door casing so I knew I was too wired.
On Sunday I tried 30mg. That also seemed ok, but I still felt wired and was out doing a little yard work.
It seems hard to hold myself back even though I know I need to heal.
I'm going to try 30mg again today ( 20mg AM and 10mg PM) and see how that goes.
I don't have ANY trouble going to sleep, in fact I feel quite exhausted by 8pm. If I wake up during the night I have trouble falling back to sleep, my mind just won't stop. However, that has always been the case. Taking HC doesn't seem to have changed that at all.
I believe that the stress dosing information you linked to me suggests an extra 5mg for minor mental or physical stress, and an extra 10mg for more serious mental or physical stress until resolved.
The Rx of 50mg seemed way too high and I didn't want to be on that for long. I think 30-40mg during recovery seems more appropriate. Maybe 35mg would be a compromise.
Doctors must hate people who self diagnose, self treat, self medicate etc. But on the other hand they can only offer recommendations and monitor for response. From reading some of the posts in this forum and on other medhelp forums, doctors get it wrong sometimes.
I think my endo is a good one, but I also had to ask for many of the previous tests I got. Since even just the timing of serum cortisol tests seems to be lost on most of them, a healthy skepticism or questioning mind isn't that bad to have.
That all being said, I agree, think I have pushed the taper a little. One day at 30mg is not enough to guide me, but if I continue to feel ok at 30mg I'll stay at 30mg for awhile before I try another taper. I'm just anxious to know if my remaining adrenal gland will begin to function.
But I have to keep telling myself its not a race.
Thanks for the info on what is included on the path report. I will ask for a copy to see if they checked whether the cells were secretory or not.
Yes - that is how they could tell my was reactive to my pituitary and no secreting itself. They should do it automatically but it takes some time like a week to 10 days to do all the staining and slides etc. Benign fits in with secreting I think.
I would ask for a copy of the final pathology when it is done - they do a quickie in the op room just so they know if they need to do more extensive surgery.
Take is EASY on the taper. I would also make sure that you are fully and completely recovered as you body does need extra for the stress of recovery - then you can do a slow and easy taper.
Going down from 50 to 40 is not bad - but once you hit 20 - that is the point usually where the adrenal has to wake and where the taper gets harder just so you know! When the dosing gets lower, sleeping should be easier too.
I also found that walking a bit eased my pain - weird!
I would ask for a copy of the final pathology when it is done - they do a quickie in the op room just so they know if they need to do more extensive surgery.
Take is EASY on the taper. I would also make sure that you are fully and completely recovered as you body does need extra for the stress of recovery - then you can do a slow and easy taper.
Going down from 50 to 40 is not bad - but once you hit 20 - that is the point usually where the adrenal has to wake and where the taper gets harder just so you know! When the dosing gets lower, sleeping should be easier too.
I also found that walking a bit eased my pain - weird!
Can they determine secreting vs non-secreting from pathology? Is that done automatically or is that something that would have had to have been requested in advance?
My understanding is that the endo determined secreting from the numerous lab tests before I had surgery so I wasn't aware that checking afterward was an option/available to investigate.
I would love for it to be confirmed that it was a secreting tumor since the labs were all over the board, and the low normal results were the most confusing, although I understand it could be a cycling pattern.
But alas, it is after the fact, so it would be a mute point. Still, I'll ask if that info is in the pathology report.
Today I am trying to reduce a little bit of HC. Down from 50mg/day yesterday to 40mg today. I think I will be ok. I sure would like to reduce some of this puffiness. I don't have sausage fingers anymore, but my cheeks, chin and neck are swollen. My tummy is too, but I think that is swelling from surgery.
I have been able to sleep at night, although I wake early, 2-3am and find it difficult to go back to sleep. I will keep hydrated and keep some salty foods on hand. So far so good for the nausea, and no dizziness from BP fluctuations. Your knowledge on what to watch for has been a blessing. Thank you.
My understanding is that the endo determined secreting from the numerous lab tests before I had surgery so I wasn't aware that checking afterward was an option/available to investigate.
I would love for it to be confirmed that it was a secreting tumor since the labs were all over the board, and the low normal results were the most confusing, although I understand it could be a cycling pattern.
But alas, it is after the fact, so it would be a mute point. Still, I'll ask if that info is in the pathology report.
Today I am trying to reduce a little bit of HC. Down from 50mg/day yesterday to 40mg today. I think I will be ok. I sure would like to reduce some of this puffiness. I don't have sausage fingers anymore, but my cheeks, chin and neck are swollen. My tummy is too, but I think that is swelling from surgery.
I have been able to sleep at night, although I wake early, 2-3am and find it difficult to go back to sleep. I will keep hydrated and keep some salty foods on hand. So far so good for the nausea, and no dizziness from BP fluctuations. Your knowledge on what to watch for has been a blessing. Thank you.
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Even though HC has a short half life - your body is, or rather a normal body, is used to and wants some down time from steroids. That is when the body repairs itself - makes bone, repairs muscle etc. That is why HC is healthier then say, pred which lasts all day and all night - and causes more side effects.
A normal body has the greatest amount in the morning and really tapers down during the day and has little in the evening so you can sleep.
I take all my dose at once in the morning. Keep an eye on the salt though things may change now.
Congrats on the benign!!! Yippee!!! Are they going to confirm if it is hormone secreting or not?