I beg to differ.
Yes, I've been hyper, manic even, on high doses of prednisone but I have not ever felt great. Weird. Out of my mind. A little crazy. Cranky. Edgy. Insomnia. Yes I do get that.
But super hero high to where I can power through anything? Nope. What I do get is relief. I get my regular energy back and I go live my life.
So to be told today that I only improved on prednisone because of its false sense of well being is frustrating. Their belief in this idea of prednisone as super charger is so strong I do not feel the pulmo really heard me. They were too busy listening to themselves.
You know that intense mid back pain radiating around the side and through my stomach along with shortness of breath and fatigue and headache that improves with prednisone?
Totally not adrenal. Couldn't possibly be.
I just had regular old back pain and got better because Prednisone will do that for ya. It's a super drug, you know, it just amps you up. That's all. I don't have anything wrong with me at all.
Riiiiiiight.
I am also a super model on the side and Taylor Swift writes break-up songs about me.
I would love to know on what planet someone with a documented history of SAI who takes high dose steroids for a month and then has problems upon weaning would be anything other than SAI?
Because that? Is the planet I want to live on.
Yeah, there are some differential diagnoses that could be worked through. I could maybe see sarcoidosis (sp?) on the table (a friend of mine had a brush with it which is how I know anything about it). Or something else. There's the lung tumor after all, but it is small, the odds are it won't have grown or it will have actually disappeared (I'm hoping for disappeared myself).
But you never know. I'm all for a thorough investigation.
The problem is I do not have a doctor who wants to do one. Or if they are doing one, they haven't told me about it.
The endo appointment is 12/10 and the CT scan will be shortly after. I really really hope I get some decent forward movement here. I'm due for a good turn.
As for prednisone, I am on 15mg and feeling better. No pain. Still kind of wiped out though and headache-y. My thought is I may have under-dosed,but, at the same time, I'm glad I didn't take more than 20mg. I don't want to make this mess any worse than it has to be.
The doctors are doing a fine job of f*cking it up all by themselves.
Posts
Not to play dr, but...
ReplyDeleteMy years of pred use has left me with permanent potassium imbalance. Not to say anything about adrenals (never had that issue, thank goodness!), but it may be something to look into. Back spasms and other cramps in me appear to be the exact symptoms you described above with the back pain/fatigue/headache.
Also, in me, pred use wasn't always the happy, but that has been the party line so long. However, my kid just had to go on it for severe allergic reaction treatment, and the nurse told me that it wasn't always the happy. In some people, it's the cranky. So I think the data is just starting to trickle in that pred use does not always make one happy and invincible.
I wish you good luck with your taper and the next doc.
I was once on a MUCH higher dose of prednisone and I felt like total butt the whole time. No "sense of well being", no super-charged healthy feelings. I felt overheated and my back hurt like hell. Oh and my throat and neck went crazy sore for some reason. It sucked.
ReplyDeleteI don't understand why an endocrine work up can't be done here. I truly just don't get it. I know, I'm preaching to the choir here. It's just so unbelievably insane that someone with your endocrine history would be left out in the cold in terms of a full work up. Hell, I've got about 1/4 of your problems and my primary did a 24 hour cortisol collection and is now checking for pheochromocytoma (hope I spelled that right, it's a tough one!)
@Kaplooey Mom: Prednisone can torture people any way it wants; all side effects are possible. Happy. Sad. Sleepy. Insomniac. Gain weight. Lose weight. It's like reading a schizo profile. However, no one in the medical field has apparently read any thing I have. Which is unfortunate since some of my sources are medical textbooks.
ReplyDeleteMy mother, for the record, wants to buy guns and shoot people while on Prednisone. I typically do not rage on it, but with all this added medical f*ckuppery I am leaning more toward unadulterated rage.
She can't sleep. I am okay with a bit of Benadryl here and there.
I have both gained and lost weight (before low carb).
Like you I have had long term muscle issues from prednisone. When I started magnesium and potassium for low carb it was a revelation. It dramatically improved the cramps and pain. Dramatically.
@ Bad Turns: I know! My medical karma is totally screwed up.
M
I'm beginning to feel like your resident pest :)
ReplyDeleteThe pulmonologist doesn't do adrenals. It's not his piece. Each specialist has their piece. The tend to forget that the pieces are connected to each other, and they all attach to the patient. ... the leg bone attaches to the...
Pulmonologists also do not like to think that their steroids have anything to do with adrenal problems, especially the inhaled steroids. Endocrinologists think the pulmonolgists mess up their "piece" with the steroids. Fun to tell them to fight with each other.
Merck Manual (a very good source) says "Adrenal crisis: Adrenal crisis is characterized by profound asthenia; severe pain in the abdomen, lower back, or legs..."
http://merckmanuals.com/professional/sec12/ch153/ch153b.html
So it makes sense to me that you could have back pain if your adrenals aren't happy. However, you aren't (I hope!) having a full out adrenal crisis.
Playing devil's advocate - if you do have back pain for some other reason, prednisone would make it feel better, and less prednisone could let the pain come back. Prednisone is a very good anti-inflammatory pain-killer.
However - many people feel like crap on pred. Dogs, actually, get the feel-good effect more. It's about 50/50 I think in people - half feel like crap, half may get euphoria. Pick your half.
Just reading again - you really need a good endo (yeah I know, good luck growing one). If you have PCOS, thyroid problems, and adrenal problems - I wonder if your adrenal problems are really just secondary.
Also - you said you're diagnosed with Hashimoto's - don't you need thyroid supplementation then? If your thyroid is low, you'll feel like crap in all directions! You need to test tsh, t4 AND t3.
Sound like you might even have a polyendocrinopathy. I wonder if your pituitary is functioning correctly. Has anyone ever looked at your pituitary? (mri)
Just re-read your medications - my family member took singulair for a long time. He recently stopped, and some weird things stopped happening. Not sure if this was really the cause, but it's kinda a weird drug, and mediates the effects of anti-inflammatory functions of the body. There is also a lot of debate over its effectiveness. Might be worth a trial discontinuation (with some doctor's agreement and supervision of course).
They also seem to have you on 2 inhaled steroids, and two inhaled inhaled long-acting beta-agonists. I wonder about that too. I I don't understand being prescribed both pulmicort and symbicort, especially in addition to advair.
This is complicated to try to explain fully, but it is possible to "flood" the beta receptors, and actually make asthma worse with too much beta-agonist (happened to family member with nebs).
Sometimes, too many medications make pharmocological soup. Doctors feel compelled to help, and whip out the pad and pen. Unfortunately, sometimes that makes things worse (what happened to us).
The guy with the asthma sitting here says he'd take advair or symbicort, at whatever dose necessary, not all three. It is not impossible that so many beta-agonists could be causing some cardiac effects (hypertension/tachycardia).
I wonder if you might be better off with an asthma specialist/allergist (boarded in asthma and immunology) instead of the pulmonologist to handle the asthma.
Also, if you use the nebulizer much, xoponex has fewer side effects (revving up the heart etc.) than albuterol.
Tracy
badturns - make sure anyone hunting for a pheo knows what they're doing. My family member was atually diagnosed with a pheo - by a very prominent endocrinologist. He was, however, completely wrong - no pheo. Pheos are VERY rare - other things are much more likely. If you don't have levels at least 3 times normal, or really more like 5 times normal, it almost certainly isn't a pheo. Also, many medications can cause false positives on pheo tests, including muscle relaxors. Check out the pheo support board if this really seems a possibility - it takes a real expert (and there aren't many) to do a good evaluation for pheo.
ReplyDeleteTracy
Thanks Tracy. Pest away. I need all the help I can get.
ReplyDeleteI'm not taking Advair, just Symbicort. Advair started to mess with my heart. I did wean off Pulmicort and think that is one of the reasons why I tanked in September, the wean was brutal.
I too think it's kind of weird to have all these hormonal issues be disparate, there has to be some kind of relationship. Whether science has the capability to find it or not I don't know.
No no one has done an MRI of my pit.
Regular blood work, not specialized testing or anything, is always normal so far. Hashi's is not clinical yet but I happen to subscribe to the belief that even if my 'numbers' are okay, I can still be affected by an progressive autoimmune process that is destructive.
I have been off Singulair and plan to wean again but things have been a little crazy off and on with the asthma. Since I'm trying to avoid more steroids, I figure the Singulair is the lesser evil. It does darken my mental outlook but not too badly. I prefer to not take it as I feel better mentally. Other than that, I have not noticed major side effects.
Except I do have to wean off it, can't stop Singulair cold turkey for some reason. I do an alternate day taper for about a week.
RE: The back pain, I do have professional training on musculoskeletal pain to the point of passing a State Medical Board exam for licensure so I know it is not muscular in origin. The pain feels like 2 little nuggets of fire bilaterally flaming through my back, sides and stomach. It is neither relieved with rest nor aggravated with activity. I don't want to be touched though and am protective of that area.
M
Ah, I see - I just read your medication list over on the right there. Glad you aren't on all of those at once. Re. the singulair, yeah, you do have to wean off. I think we went even slower than that actually. It was just a thought - sometimes a person ends up on a whole bunch of meds, and doesn't know what's helping or what isn't. So simplifyig it as much as possible can be helpful. We said, he's stopping everything that isn't absolutely necessary, and then they can be added back if needed. And if it isn't life-threatening, one med change at a time.
ReplyDeleteSo with hashimoto's - you haven't actually been diagnosed then? There's a family history, and you think you have it? Did I get that right?
Steroids can cause some of the low thyroid feelings I believe, as can the adrenal suppression.
Pain sounds more adrenal to me - neuropathic pain can feel like that as well, but if the pain comes along with lowered blood pressure, then I'd guess your adrenal theory is most likely.
Presuming you take your pred in the morning, I'd think a minimum would be to check am cortisol before you took your daily dose.
If it appears you have adrenal suppression currention from the bloods and clinical picture, in your place, I'd try to get them to switch to hydrocortisone for a time period (I think doses of 10mg am, 5mg afternoon, or maybe 15mg am are ususal). Go along for a while, and see if the adrenals seem to be coming back (again, am cortisol readings, if ok-ish, maybe skip a day or two and take another reading). Again, I saw a very slow taper - 4 months.
I keep putting in the disclaimer though, I'm not a physician :)
Tracy
Thanks Tracy and everyone. I am just grateful no one has been going "YOU'RE CRAZY" in the comments here as I FEEL quite insane. I keep going to the 'experts' and their behavior makes me question myself.
ReplyDeleteIt is so surreal it takes my breath away.
As for the Hashimoto's it was diagnosed by 2 endos. I went for a 2nd a opinion as the 1st endo was so horrible I didn't believe a word he said. They did test for the antibodies and I do have them. Plus family history.
It's just a question of when I become officially hypothyroid and at what point thyroid meds would ever be prescribed.
So while blood work is normal, I've not had the super duper thyroid testing patient advocates recommend. Just whatever the endos feel like doing (which is never much) so I don't think my Free 3 has been tested. Or whatever it is. I have not been able to read as much as I would like on the Hashi's.
M
P.O.P.- just luck I think. I've heard that bad endos are very common. Dunno why. Maybe it's because there's lots of diabetes research $ and it attracts people who would have (and should have) otherwise gone into something a little less intense, like cosmetic dermatology.
ReplyDeleteTracy - yes, my doc seems acutely aware of the confounding effects in the phheochromocytoma work up, including (to my horror) caffeine. The check was triggered by the clinical presentation plus an abnormal random urine test.
But having read up a bit on all that, the pheo, the related MEN stuff, I find myself thinking of our blogger, P.O.P., quite a lot.
Hey Bad Turn--I have heard the endos are bad b/c they all wanted to be cardiologists (competitive field) and didn't match in that specialty (i.e. they weren't very good) and had to settle for endo (which will take anyone I guess). I don't know if that is true, but it is what other patients have said.
ReplyDeleteWhen I lurk at doctor forums I always notice no one is posting anything endo. It's just dead.
I am not even going to think about pheo-what? right now. Maybe later.
Gotta get the toddler to p-school and go in for a chest xray today. I'm running late.
M
Bad turns and POP - you two oddly manage to have the few things I actually know a fair bit about *pats self on back* and have researched extensively.
ReplyDeletePOP - you don't sound like you have a pheo. Nothing's impossible, but nothing you have said sounds like a pheo to me.
I understand now about the hashimotos. Often, to see if it seems like you have hypothyroidism, it's recommended to take your temperature first thing in the morning - being low often points to hypothyroidism. I'd have to go hunt details, probably readily available on the thyroid boards (let me know, I'll hunt it up if you have difficulty) but I believe I remember it's underarm temp.
Bad turns - abnormal urine/blood catecholamines and metanephrines can happen from all sorts of reasons. I'm glad if your doctor is being careful - some get all excited over a possible pheo, and aren't careful, or just aren't knowledgeable enough.
I encourage everyone to get an actual copy of their lab test results - even if you don't know how to interpret them. If you'd like to share, which values were abonormal, and how far out of range? Plasma-free metanephrines are the best blood test for pheo.
My family member had the pheo misdiagnosis, and we corresponded with the NIH and Mayo (worlds experts in pheos) so I got to learn a lot of details about pheo testing, and how many docs mess it up.
btw - if you guys see me on other medical blogs, I'm Tracy2 - I noticed there's another Tracy - I'm not her :) Guess I should stay consistant.