L, Your are amazing to take you time to write me. I am currently seeing an endo at Hopkins, but that is for a thyroid nodule that may lead to thyroid surgery in a few months. He just by chance has to deal with my steroid use and tested my cortisol levels the other day. That is how I found out they were extremely low. He told me to wear a medic alert bracelet and if I had trauma , surgery, dental work,ect up the dose. I ask him if mental stress would cause me to get the chest pain back. He said no , that mental stress shouldn't affect me.. Are you kidding,I have been under mental stress for an entire year, with the heart puncture, 5 trips to the ER in a year, or 6, lost count with chest pain.. all the problem being on the steroids ,it goes on and on.So how many Drs. does one have to see to get someone to actually see me as a person? Someone I hardly know when I look in the mirror. I know all of us have so many problems here, I feel so selfish even complaining.
I live in the Baltimore/ Washington D.C. area, any excellent endo. anyone could recommend would be wonderful
I will try the 5/2.5 dosing. Does that mean 5 a.m. and 2.5 p.m. ? I will mention the medrol to my GP. She is ''watching'' me at the moment. Dr. at Hopkins pretty much saw me for the thyroid nodule. However, he would see me if I wanted him to for the cortisol/ prednisone issue.
I think if I go ever other day with the prednisone it just confuses the adrenals even more, but that is what the Cardo Dr. has me doing.
I will try tomorrow to find a new ENDO. and start again..
Right now I just ache all over and don't know why that is, except blame it on tapering. I don't think I am tapering.. I take this stuff all the time.
Thanks for the insite about the supplements and diet. I will start working on that. Eat and move...and water..lots of water..
Estrogen, I have 25mg. patches, I just don't use them. I put the first one on and a few days later I was in the ER with chest pain. I know it could not have been related ,but I never used them again.
I think I just need a good DR..I just get passed around. And the ''Nice Girl'' Southern upbringing I come from, well I just don't rock the boat, smile and say thanks, leave the office and know I have not gotten the help I came in there for again..
Thanks again L..
First, why are you taking 7.5 instead of 5 then 2.5? You shouldn't taper to every other day until potentially at <5 every other day-- even then, I suggest 2.5 daily if you get below the 5, 2.5, 5, 2.5, etc...
That dose is under the suppression level for almost everyone, but you should definitely (as your adrenals do depend on it quite a bit when under stress, mental often causing physical--otherwise we wouldn't get headaches when frustrated, sweat when scared, or feel nausea when telling off bill collectors--a major early sign of adrenal insufficiency is vomiting) consider changing to a really thorough, obsessively perfectionistic endocrinologist. It may be a good idea to shield yourself with some estrogen, very low dose.
I posted elsewhere about vitamins (post about endocrinologist being number crunchers)... Especially with your heart being fragile, be very careful about vitamins. Most OTC supplements (including all vitamin C supps) are harmful or at best neutral. Long post--one of only a couple I have posted so check my page (posting from a mobile so I can't copy&paste)... Stick to natural food sources, not processed products (and of you take D, use the Rx kind however often, even if just 1 a month.. It is how to get a pure form of it not cancelled out by fillers or in a form we can't--as is true with 99% of supplements-- even digest or (like vitamin C) which do harm, not help, taken in pill form. I mention C because heart attacks in females at early ages have been linked to use of Vit C supps...
Ask about medrol to minimize side effects. It costs about twice what pred does but is closer to what your body converts pred to and doesn't, as mentioned, have as many side effects. I take, though I am weaning down to 8 (=of 10 of pred daily), 12mg (15pred equivalent) medrol... When at 16 (20 pred), my moon face was fast hitting--from heart shaped to moon in 2 months--and going back down to then-5mg/day (slightly more than you each week), it settled down. My gut was still swollen--abstended-- til I switched to Medrol.
Regarding weight loss, you have to start by jump starting energy consuming MORE food than your weight requires, then ALWAYS EAT ENOUGH TO MAINTAIN and rely on exercise! Not eating enough will make your hormones fly all over and you'll suppress calorie digestion by going into starvation mode. Never buy the "1200 calorie" myth. 1200 will keep you barely alive but compromise everything. Salt levels are steroids' big impact... And it means drink more water and sugary juices (not sugar added, fruit sugars--fructose/glucose naturally in them) and milk. Again, medrol doesn't screw with salt so much... So I eat more salt on medrol to keep water working how it should. Your Endo will need to check your numbers OFTEN. It isn't even "against your Rx" to just swap to the 5/2.5/5/2.5 routine for now... Staying on that or 4/2/4/2 medrol isn't going to permanently keep your adrenals asleep, but that 20mg dose WILL take a solid year, less if you exercise (aquatic therapy is top notch) regularly, to work your system off, particularly as you aren't producing estrogen or taking a low dose of it...
As for the use of steroids for the inflammation, you actually should NOT generally take NSAIDS before most surgeries aside from placing stents in vessels or balloon angioplasty--then you would be on low dose aspirin and plavix most likely... The NSAIDS make controlling bleeding very difficult and your doctors may have been thinking about surgery, the risk of critical/mortality-risking blood loss and the general guideline to avoid transfusions when you KNOW someone is going in for surgery. NSAIDS are also tough on the gut... There are a lot of reasons, your hysterectomy being another valid one, to pick precautionary steroids for conditions or their treatments... So nothing to blame indeed--the best guess (all the doctors can go by--even cures are subject to a person accepting--physically not rejecting--the "cure" therapies) keeps millions alive who'd otherwise be passing on at early natural death ages. Still, don't be afraid to get a second opinion! I am alive and defied death 4 times so far because as a practitioner of old, I didn't just settle for the closest or who I was first referred to. I have a hospital with all ace departments minus two-- the other two saved me from the first not listening at first (an endo only saying "your number was 11. That is above 10." when normal range was 27-55... The other wanted to do a stent. I appreciated the accurate dx given its rarity, but he was high as a kite when--11 hours late as an aneurysm patient came in-he got to me for my surgery... I went somewhere else, found on more advanced equipment that the estimate was low regarding how much artery I had lost... And was told all the risks of stents I knew and poof, one balloon angioplasty later, 3 years passed with no problems from it whereas being "young" (not 70!) I likely would have had cells grow into and eventually clog or eject a stent. Good thing, I guess, neurology was my field. I was scared to death but only proverbially, knock on wood. While plavix was super short term for me (with aspirin at first), if my heart had been impacted, as I already had inflammation (risk of vasculitis is huge), those would not have been the right therapy. You can't trust the "more flaws than correct bits" Internet to explain nuances, let alone (as typically "all" those sources will ultimately start from ONE source and then reword it to sound original, often misunderstanding altogether!) replace medical schooling with its constant reading of hundreds of journals, live learning in the ORs and ERs alike, and doingit every day. I bring stacks and stacks of highlighted textbook and research journal original documents with me to some appointments, rather I did when I was establishing my need for steroid use(!) as chemotherapy drugs were keeping me out of work and in misery... But picking battles means politely inquiring when it is important and letting stupid stuff drop (like lame nurses not knowing how to do their jobs in my case!)
Good luck sorting this out--ask any q's you have!
The thing with steroids is that they can cause Cushing's independent of the steroids - and it cannot be tested for until you are off the steroids. So it is unknown if the symptoms are the steroids, or other.
You are on a dose more than a suppressive dose. Pred can last 36 hours. The pred makes you fat - so not eating will not have much effect.
As for mental stress, it depends on the person to the extent but the doc is an idiot - of course mental stress has an effect on a person's body (is that not what they preach all the time - it is stress blah blah blah) and so if you get sick, or whatever, heck, I have to up my steroid too. They are nuts. It is called stress-dosing. Look up Addison sites about it - since you are suppressed, you would need to take extra care and know what adrenal crisis's are as well. You should wean back right away after a stress dose.
Thanks for the info. I doubt if I go to such extremes to get off this stuff. My Dr.'s do not seem concerned enough to try alternative therapy. I am still doing 7.5mg every other day. I don't know when to try and lower my level.. today, next week ? I have major insomnia, sweating whenever my body decides to do it.
I had a total hysterectomy in 2004 and do not take hormone replacements. So estrogen, ect. is not there..vitamin D is normal, take it daily along w/ calcium, magnesium, C,E,.So I think I am covered there.. somewhat anyway.
On 7.5 mg every other day. will I still have ''moon face'' and just stay fat? Or can I loose weight if I can stop eating. lol I really don't eat that much, I just do loose the weight. I thought weaning from 20mg to my current dose, I would see a change in my body..but not really..
I just want my life back before the cardiac ablation. Apparently ,no one is to blame for the heart puncture, or the preidisone (even though all info on the internet state ''do not use steriods for percarditis '' as a first line of medications. Should have used NSAIDs instead. But that is too late now. I do take lots of NSAIDs as well . I am just so sad that this has happened to me. I know I am lucky to be alive after cardiac tamponade from the heart puncture.
I stress all the time. Dr. said mental stress will not affect the adrenals. I find that hard to believe. Is that true? I had a thyroid biopsy last month and had to go to ER for chest pain 3 days later, upped the prednisone in hospital and for a week after. Seems I take 1 step forward and 2 back..
Thanks for listening.. I know there are so many with so much to bare..I feel blessed I am still alive and doing ok.. just frustration takes over sometimes.
One possible result, apart from Cushing's, is the appearance of Addison's disease. The only *accurate* way to do an ACTH stimulation test on steroids is switch to dexamethasone, the only one that will not impact the stimulation of your adrenal glands. Chronic steroid use can, as is true with taking melatonin and many other naturally produced chemicals, cause a permanent shutting off of production.
If you want to see if there is any function left to stimulate, which would help you know whether or not you can possibly ever wean off the steroids ( the answer is "not likely" as you didn't produce enough cortisol to handle your condition to start, but it is worth investigating if there may be a chance), you are looking at a year on dexamethasone, which is very strong and may cause side effects you can't handle (think of it like all of what prednisone does, good and bad, multiply the strength by 10, and add the impact of high dose aspirin-- it has a bizarre secondary effect like NSAIDs). Also consider that your *mineralcorticoid* levels may be jacked up and it might be more effective to take a very low dose of Florinef (fludrocortisone) and lower the corticosteroid dose--normal doses of florinef for Addison's patients are 0.1-0.4mg a day. Some take 0.05, even, which may be more what you'd be suited for if you aren't showing signs (you would be in a state of crisis if you were already "Addisonian" with severe dehydration, hypoglycemia, hypotension, hypertachycardia... You would feel like you were honestly dying (as its mortality rate is scary!)
That isn't to scare you--it takes a long time or EXTREME physical trauma left undertreated for months or years to cause an actual adrenal insufficiency!! Suppression is NOT the same--take steroids and your body adjusts its levels. Don't take them when you need more than you are making and THEN your body will destroy systems including the adrenals or moisture glands (Sjogrens) or any other odd combo, whatever your body is confused about being the problem source.
Blood tests aren't the whole picture. Ask about dexamethasone subbing for the pres, but don't be surprised if your doc says heck no since it is SO STRONG that tiny doses--TOO TINY to properly control for most patients aside from acute issues like pneumonia that need intense "everything" therapies, not just steroids...
If side effects are a main concern--moon face, salt levels out of whack--try medrol, methylprednisolone. It doesn't mess with salt and is close enough to have a clear dosage guideline, 4mg medrol for every 5 prednisone..
Good luck. Weaning down, not likely off unless a biologic therapy or similar can truly replace the steroids--takes years for most... We are unfortunately just beginning to find other therapies that aren't so mixed in good-evil extremes. The next generation or two will realize what we are doing, but right now, extra adrenal boosts are what we have for many issues.
Last btw: did your estrogen, aldosterone, etc levels get checked? It is really critical to know those along with vitamin D and B12&6 and potassium levels since bone density can be really hit hard and pred can screw with hormones across the board.
I said *when or If* - I agree... iffy... seen it happen to my friends - or even the pred cause wicked cases of Cushing's. Nasty, nasty drug.
Causes the adrenals to "sleep"? How about "die"? Prednisone and inhaled steroids wrecked mine and it is only through alternative medicine (and staying off steroids) that I am slowly recovering.
Any dose over 5mg of prednisone will cause adrenals to stop functioning as you have replaced their function, so the lazy buggers will simply sleep. I am sorry, but there is simply no way to tell you if and when they will wake up. The process of waking them up is the tapering - or weaning as it is called - slowing weaning the body off the external source to try to get the body to start working again.
The problem is that if you had any issue before - and they often go undiagnosed for years as symptoms are vague. Plus weaning causes a great deal of pain. Prednisone has properties that fight inflammation so when it is reduced, pain is increased. It is hard to deal with but that is the hardest part of the weaning/tapering.
It could be that the pain you feel is not from the pericarditis directly (ask) but from the taper - so you have to find out.
Tapering is a very slow, painstaking process and requires a lot of patience. Make sure you know the symptoms of an adrenal crisis as well.
I have known some people not to have their adrenals not recover from even short stints on steroids, but hopefully you will - it will not be known until you try. You have to get under 5mg to know if your own are functioning.