I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on January 08, 2011, 02:18:57 AM
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I went to a medical Seminar on Sjögren’s Syndrome.
This Seminar was mainly attended by the medical profession but I was lucky to be able to attend,
I did a good job telling them about my Sjögren’s and how I was desperate to know more about it.
Halfway through the Seminar, a young lady stood up to ask a question, when the doctor spoke about medications.
What she said completely shook the audience.
She said that Corticosteroids could alter the personality and cause psychological changes in the patient
and she asked the speaker if this was true? (I think this lady was like myself, not a medical person).
The speaker replied to her question that there can be some effects, but he glossed over her question and quickly moved on.
I had never heard this before. I had not taken Corticosteroids and thought they were merely another medicine
to control the flare-ups of Lupus and other autoimmune diseases.
Has anyone on IHD had any experience which agrees with what this lady was saying?
It shook me and I would like to know and
I have never heard a medic talk about this type of side-effect from corticosteroids.
(If it does have an effect, is it reversible if it is stopped?)
Thank you, Kristina.
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I have found that prednisone can make me moody, quick to get annoyed, fairly contrary, impatient and somewhat hyper. However, I've been on it for so long (since 1980, but only 5 mg daily for the past many years) that it's difficult to know how much is the drug and how much is actually my own personality. But no matter, drug or me, I try to remain aware of my reactions to people and things and to control what I say or do. The harder part is applying reason to my own internal feelings to stay calm and relaxed about things and to put them in perspective. If something relatively minor has me all crazy feeling, whether it's the prednisone or my own chemistry, I try to talk myself through the bubbling and focus on the practical, the stable, the positive, etc. I also find that exercise is crucial...really helps me to wear away physical and mental static that is totally useless to me or anyone else.
I've never been very good at tolerating fools (as I define them of course) and prednisone seems to sharpen that particular lens for me. Thus, my intolerance for intolerance becomes sort of funny and stupid all at the same time...I try hard not to take myself too seriously which helps me to not get too wound up about stuff that I can't control anyway.
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I am currently taking a high dose of prednisone 35mg every other day, plus I am receiving pulse treatments (IV drip 3000mg every 2 months, over 3 days, 500mg/hr). At my last visit to the nephrologist, she turned to my wife, (who always goes with me to the nephrologist) and says "have you noticed any change in his behavior". Women have a way of communicating with each other that men really do not understand. >:D I think the answer was "maybe a little bit". :P I would say that since I started prednisone, I am more intense. I seem to have some issues with sleep, increased appetite. There are some rare cases where side effects have been known to cause changes in personality, but this is not considered typical.
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Thank you, monrein, your answer is extremely lucid.
You have obviously thought very deeply about this aspect of corticosteroids.
I have since read that it is advisable to keep the dose as low as is reasonable
to achieve the objective. I admire the way you have analyzed your position
and the way you are going about dealing with it.
Thanks again for your very precisely expressed answer,
it is very much appreciated.
Kind regards from Kristina.
Thank you Mark, it is most kind of you to let us know about your experience
as you are taking a high dose of of corticosteroids.
It is interesting that you have your wife being involved
as she can convey to the doctor any changes.
If one lives alone one has to do a lot more self-analysis
by making judgements on how one interrelates with other people.
Having a partner is a great benefit.
It suddenly occurs to me whilst writing this if corticosteroids have a different, or more potent,
reaction on females because of a stronger hormonal influence?
Thanks very much for your valuable input, Kristina.
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Quote from one of her Nephrologists - The good news is the Pred is working, The bad news is the Pred is working......
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Oh yeah, prednisone at high doses is hell on mood swings. I was still on high doses as the holidays hit. I would end up bawling at Maxwell House commercials. I didn't even bother to turn on the radio. Nothing like maudlin carols to really do me in. (That Christmas Shoes song, anyone?) The appetite is endless, too. Thankfully, I'm down to 5 mg now, and things are much better. I've still got too much appetite, but I don't notice the mood swings really at all.
I don't think it would have been shocking news to the medical professionals, though. I was well warned about the side effects, both from my docs and nurses and the other patients on here.
Since the mood swings fade as the dose is lowered, I'm guessing that yes, the effects only exist as long as you take the meds and aren't permanent. Personally, all the tears were well worth the kidney!
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I am surprised that the young lady's question 'shook the audience'. I thought the mood altering qualities of corticoSTEROIDS are well-known and well-documented.
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I am surprised that the young lady's question 'shook the audience'. I thought the mood altering qualities of corticoSTEROIDS are well-known and well-documented.
No kidding!!!! Books have been written about it. I've read them.
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Absolutely!
I've been off my Prednisone since the end of April 2010 and I still find my anger and irritability has greatly been affected. I see my doctor on the 26th and I plan on asking for some help. I have never gotten so angry, so fast, and about so much in my life. It's becoming a problem.
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. I didn't even bother to turn on the radio. Nothing like maudlin carols to really do me in. (That Christmas Shoes song, anyone?) The appetite is endless, too.
:rofl; I'm not even on any medication and this song does me in.
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Thank you very much for all the kind replies.
The Seminar was a “local” Seminar and perhaps there were other people there
who were interested who hadn’t taken corticosteroids before,
but there was a noticeable reaction to the mention of psychological changes.
Perhaps the medics did not want go down this route
because it seems that corticosteroids are THE common medication
prescribed for many different anti-inflammatory and auto-immune-problems.
From what I have read so far here it seems important to get the dose as low as possible
and, I have since found out that it is suggested to keep it under 9 milligrams.
Thanks again for all your kind replies, I am not up-to-speed on corticosteroids,
(because of my drug-intolerance they have not been prescribed to me),
so I appreciate all your comments, kind regards from Kristina.
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when i was on high doses of prednisone my mood swings were crazy. I still remember yelling and screaming like a mad person. Like MOREIN I was on a 5mg matience dose and the lower dose didn't seem to effect my moods, but other side effects would crop up every once in awhile like overgrowth of gums. I don't feel like the prednisone effects me that much anymore (i could be wrong) I feel like my personality is pretty stable... :clap;
WEBMD is a good cite to go to and look up medications and read the reviews folks write. many of them talk about prednisone and mood swings...of course there is also weight gain, hair growth, and appetite increase to name a few
xo,
R
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Oral steroids are extremely potent drugs, and their long-term use can cause personality changes. This has been known for a long time. You can find it in the Physician's Desk Reference.
In fact, there was a classic 1956 movie: "Bigger Than Life," a fictional story of a man (played by James Mason) who took cortisone and underwent such personality changes. The movie was made in the 1950s, around the time that doctors had first begun to treat patients with steroids and noticed such side effects.
http://www.imdb.com/title/tt0049010/
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Thanks for your answer, rsudock.
I don’t know whether I am right or wrong,
but it appears that when people are on a low dose of corticosteroids,
the side-effects are minimal
and many people don’t seem to notice great changes.
I have read that weight-gain is a problem.
Is this because os an increased appetite generally
or is it an appetite for sweet things only?
Thanks again from Kristina.
Thanks Rightside, for your interesting input!
I bet this movie of 1956 “Bigger than life”
was not sponsored by the pharmaceutical companies!
I shall look out for this movie. I think James Mason was a very fine actor!
It just occurred to me whether some of the side-effects of corticosteroids could also arise
because of an inter-reaction with other medications?
Thanks again from Kristina.
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Oh yes, weight gain. I didn't just crave sweets, although I crave them a lot more now than I ever have before. During my time on Prednisone I just wanted to eat all the time. I craved raw almonds, which are good for you in small quantities a day, but they are very high in fat. I also craved shrimp. ???
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Increased appetite, not just for sweets. Really, I go in streaks when sweets don't appeal at all - but I can't get enough cheese, olives, pickles, smoked sausage, etc. - anything savory. Or a week or so when all I want is Tex-Mex spicy stuff.
kellyt - I've done the almond crave, too. Have you tried these? http://store.bluediamond.com/Lime-n-Chili-Almonds_p_28.html Truly evil invention for those of us with cravings - spicy almonds!
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Thanks kellyt and jbeany. Before I raised this question about corticosteroids
I never realized that food-cravings are an issue, and from the replies here
it appears these cravings can be a very big issue indeed.
I really appreciate all your honest replies,
it is very kind of you all to talk about this frankly.
It seems that corticosteroids are an extremely powerful medication
and they seem equally powerful in the side-effects
they give relative to the dose taken.
I would be interested to know if anyone has found a way
of controlling these food-cravings or somehow found a way to
side-track the mind from thinking about these cravings?
Thanks again from Kristina.
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kristina, you have to use the same will power as you do on any other diet. I try to watch my portions, and quit when I've had enough, regardless of if I still feel hungry. I try to distract myself - go do a craft to keep my hands occupied, or go for a walk. I've gained weight anyhow, but at least my weight is staying relatively stable now at a low dose, and I'm even managing to lose a bit. You have to learn to ignore the signals that say you are hungry, because the prednisone is sending them even when you've had too much to eat already.
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Thanks jbeany for your very interesting post.
I can well imagine that using will power to control a craving for food
caused by medicines can be very difficult indeed.
Has anyone tried hypnosis to block these signals of corticosteroids, which make patients
eat and crave whilst being on these medicines, and did it work?
Thanks again from Kristina.
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Just keep healthy food and snacks around you at all times.
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I'm 3 months post transplant and have been on a maintenance dose of 5 mg of prednisone for over a month and I still have crazy mood swings. Lucky for me, I have absolutely no problem with weight and don't feel uncontrolled urges to eat. The doctor has had me try my prednisone dose at different times of the day to see if it helps me deal with the side effects. First I took it at 7 am with breakfast and I had side effects. Then I tried noon with lunch, but still had side effects. Now I'm trying dinner time and so far it does seem to help, but only because instead of spending the whole day awake on prednisone, I'm spending much of that time asleep. I have never had anxiety problems like this before, except for that last time I was on prednisone 10 years ago for 6 months. It's not so much a feeling of anxiety as a feeling of extreme agitation leaving me with a quick temper and aggressiveness. Exercising everday definitely helps to prevent extreme mood episodes because it helps to get rid of all that energy. I'm hoping things will settle down in the long run.
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Thanks very much for the contributions, kellyt and Sunny.
The idea of healthy food snacks sounds like a good idea, kellyt.
It appears that even a low dose of 5mg can cause irritating side-effects.
I am sorry what you go through, Sunny, I can’t think of any antidote.
I do hope things settle and your body adjusts soon.
I just had a thought, I wonder if some people naturally produce in their body
a higher level of steroids than others?
I did read that the body is most active in producing this
naturally at 4 - 5o’clock in the morning,
but I wonder if the amount varies from person to person
or from male to female?
Best wishes from Kristina.
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Oral steroids are extremely potent drugs, and their long-term use can cause personality changes. This has been known for a long time. You can find it in the Physician's Desk Reference.
In fact, there was a classic 1956 movie: "Bigger Than Life," a fictional story of a man (played by James Mason) who took cortisone and underwent such personality changes. The movie was made in the 1950s, around the time that doctors had first begun to treat patients with steroids and noticed such side effects.
http://www.imdb.com/title/tt0049010/
Thank you, Rightside for the information about the movie “Bigger Than Life”.
I have now had an opportunity to watch the movie and this is quite a very serious film!
The film starts very calm about a family and their day-to-day-life, their dreams (posters of Bologna, Rome, Firenze on the walls).
No chance to travel though, the husband works as a teacher & has to supply further income with a second job at a cab-company.
The husband starts to experience bouts of pain and black-outs. In Hospital he is diagnosed with an inflammation of his arteries,
only some months to live, unless he undergoes an experiment with the new “miracle” hormonal drug “cortisone”.
Now the film really starts:
At first he takes normal dosages to carry on teaching,
but feels his performance gets better by upping the dose of cortisone,
he even acts like a doctor to get from a pharmacist more cortisone “for a patient”.
At first he becomes superstitious, starts to overestimate himself, becomes a super-egotist,
gives philosophical teaching-lectures to everyone who would listen :
“...doctors know how to leave us alive, but they don’t know why...”,
terrorizes emotionally his wife and son and through his own psychological turmoil
he becomes an intolerable bully, halluzinating.
The more cortisone he takes the more his character changes
until it is unrecognizable and he becomes potentionally dangerous.
He ends-up again in hospital de-toxicating from the overdose of cortisone
and starts getting back to “normal” but needs supervision
about his cortisone-taking from now on.
Based on the article (1955) in The New Yorker by medical writer Berton Roueché: “Ten Feet Tall”.
Thanks again Rightside, that film certainly puts me into the picture.
It is scary and leaves one shocked at the power of taking cortisone.
Kind regards from Kristina.
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When I was on prednisone, I had mood swings, large appetite; weight gain, moon face. I also had avascular necrosis on both the hips. I know everybody is different but I hate this drug.
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MakeMyDay, predisone is a big reason I've never wanted anything to do with a transplant. I know they have newer drugs, but boy, doctors sure do love them some Predisone! It's what destroyed my father's body: avascular necrosis in both shoulders, both hips, both knees... all were replaced, but the prednisone-caused glaucoma was an ongoing thing. It may works miracles in some regards, but I think it's a terrible drug and I'd do anything to avoid it.
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I'm 3 months post transplant and have been on a maintenance dose of 5 mg of prednisone for over a month and I still have crazy mood swings. Lucky for me, I have absolutely no problem with weight and don't feel uncontrolled urges to eat. The doctor has had me try my prednisone dose at different times of the day to see if it helps me deal with the side effects. First I took it at 7 am with breakfast and I had side effects. Then I tried noon with lunch, but still had side effects. Now I'm trying dinner time and so far it does seem to help, but only because instead of spending the whole day awake on prednisone, I'm spending much of that time asleep. I have never had anxiety problems like this before, except for that last time I was on prednisone 10 years ago for 6 months. It's not so much a feeling of anxiety as a feeling of extreme agitation leaving me with a quick temper and aggressiveness. Exercising everday definitely helps to prevent extreme mood episodes because it helps to get rid of all that energy. I'm hoping things will settle down in the long run.
Wow! At three months post op you are already on maintenance of 5 mg? I wouldn't have had trouble with weight gain either if I had tapered down that fast. I'm jealous! :) I left the hospital on 30 mg and I was probably around 20 mg at 3 months post op. All the other stuff you mention I also had. I hope you can get to a point of no side effects soon.
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MakeMyDay, predisone is a big reason I've never wanted anything to do with a transplant. I know they have newer drugs, but boy, doctors sure do love them some Predisone! It's what destroyed my father's body: avascular necrosis in both shoulders, both hips, both knees... all were replaced, but the prednisone-caused glaucoma was an ongoing thing. It may works miracles in some regards, but I think it's a terrible drug and I'd do anything to avoid it.
Oh, but DD, do not let this stop you. I don't know where you are located (OK, let's take a wild guess and say the Southwest) but steroid-free protocols are everywhere now. If your centre does not have one, ask them to try it with you or switch centres. I read a journal article years ago that said that longterm steroid use has been found to be detrimental to transplants. I have had my transplant 10 months and I only received one intravenous, perioperative mega dose of prednisone. I received the same back in 2007 when I was hospitalized for viral meningitis - they called it a 'crisis dose'. Other than that, no prednisone in years. Tell them about your history and I am sure any decent transplant program will be eager to see you off prednisone as quickly as possible.
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This is all extremely interesting and I thank you all very much indeed for your contributions
to this deeply concerning and delicate subject, that is the taking of corticosteroids.
It seems that there are different protocols:
those that step-down prednisone quickly;
those that retain a higher dose for a longer period;
and, those that have found a new way without prednisone.
This is how I understand it from the above entries.
Could it be we are moving into a time where prednisone
will be superseded by another protocol with less side-effects?
It also appears that the side-effects can vary significantly
in variety and potency from person to person –
which is most disconcerting for the patient,
as they don’t know what will be the effect on them.
I am extremely grateful for everybody’s openness.
Thanks again from Kristina.
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MakeMyDay, predisone is a big reason I've never wanted anything to do with a transplant. I know they have newer drugs, but boy, doctors sure do love them some Predisone! It's what destroyed my father's body: avascular necrosis in both shoulders, both hips, both knees... all were replaced, but the prednisone-caused glaucoma was an ongoing thing. It may works miracles in some regards, but I think it's a terrible drug and I'd do anything to avoid it.
my bro had avascular necrosis in both hips they only replaced one of them. he was 23 years old when this happened & only had the kidney 4 yrs. but he required many high doses of prednisone b/c the kidney was constantly rejecting...my poor baby brother
xo,
R
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Be sure if you are on long term prednisone to taper off very slowly. 1mg a month. So if you are on 10mg go down to 9 for a month, then 8 for a month. Yes they come in 1mg tablets.
I have never been able to quit completely. I'm still on 2mg a day. I just get too stiff. My adrenal glands just got too use to the prednisone and quit making as much as it should.
I think everyone should be on 2mg a day. I feel great. :rofl;
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Thanks for these two posts, rsudock and Rerun, a very low dose seems to be tolerable,
but I wonder what the long-term effect is even on a low dose.
I wish everyone on this medication all the very best as it seems to be both a very serious treatment
and very difficult to tailor to one’s needs such that it is tolerated comfortably.
Thanks again from Kristina.