Scleroderma Information » Scleroderma » BEWARE OF STEROIDS (PREDNISONE)

Question:

On Thu, 22 Oct 1998 18:07:14 +0100, Helen Williams <hwilli…@zetnet.co.uk> wrote: – Hide quoted text — Show quoted text ->The message <70mq2p$…@nnrp4.farm.idt.net> >  from  "rob" <22rdunc…@idt.net> contains these words: >> Denial is the first symptom of steroid psychosis. >> You must have it bad. >Is this called-for? >Helen W:(

My psychiatrist told me, "You have paranoid tendencies." The only reason the SOB said that was because he doens’t like me. Donn

Response:

>>> Denial is the first symptom of steroid psychosis. >>> You must have it bad. >>Is this called-for? >>Helen W:(

Uh… It was a joke, at least I thought it was a little funny.  Sorry if I was misunderstood. >My psychiatrist told me, "You have paranoid tendencies." >The only reason the SOB said that was because he doens’t >like me. >Donn

Those bastards are all out to get us.  ;^) Rob

Response:

Now, I’ve had 1g Solumedrol IV  once a month for….lets see…going on 7 years now.  Strted out as a way to stop attacks before ABC were available.  But I found that it also significantly reduced my symptoms.  So I’m still  it. for the boost w/ Avonex to halt progression… Anyway, they did a bone-density scan and I haven mild osteoperosis (sp).  Docs think I’ll be OK, just have to up my calcium intake and get more weight-bearing exercise….. Kevin – Hide quoted text — Show quoted text -Amanda Rowe wrote: > I agree with Cari on this one. This is very rare, steroids can be > lifesaving. For somebody to get this complication on such a small amount of > steroids is extremely rare. I have an aunt with RA taking pulsed steroids > for over a decade, she is FINE. > Teedclo <teed…@aol.com> wrote in article > <19981021113644.02584.00003…@ng01.aol.com>… > > Michael Walker wrote: > > To put this in perspective:  over 14 months I had 26 GRAMS of IV Methyl > > Prednisolone.  I had NO side effects..I repeat NO SIDE EFFECTS. and I > knew all > > about the risks of aseptic  avascular necrosis… That was back in > 1993/94. It > > is now nearly 1999 and my hips/joints.. ALL bones are fine > thankyouverymuch. > > Without the steroids I would be dead. > > Do NOT be scared off my these RARE reports. > > CAri > > ]

Response:

The message <70o6qj$…@nnrp1.farm.idt.net>   from  "rob" <22rdunc…@idt.net> contains these words: > >>> Denial is the first symptom of steroid psychosis. > >>> You must have it bad. > >>Is this called-for? > >>Helen W:( > Uh… It was a joke, at least I thought it was a little funny.  Sorry if I > was misunderstood.

My misunderstanding, though there was nothing to indicate that it was a joke. Helen W:)

Response:

Helen Williams >> >>Is this called-for? >> >>Helen W:( >> Uh… It was a joke, at least I thought it was a little funny.  Sorry if I >> was misunderstood. >My misunderstanding, though there was nothing to indicate that it was a joke. >Helen W:)

As I have said many times in the past, my jokes suck… 8*) Although I did find humor in the misunderstanding itself. I  suck at comp comunications.  There is no doubt. Rob

Response:

In article <19981021204922.01229.00004…@ng135.aol.com>, syl…@aol.com (SYLV77) writes: >Uh, oh!  How long does this stuff stay in your system?  I have taken more >prednisone this year than I want to think about.  Every time I get off it, I >say never again, but it is the only thing that can get me back on my feet.  I >thought when I stopped taking it, the side effects would go away.

If you have surgery within a year of taking prednisone, they give you extra steroids to get you thru the procedure.  The weight gain stays around if you can’t exercise (if you are too disabled).  I got cataracts from 2 1/2 yrs of it (for ulcerative colitis, which I also have)k but my bone scan was normal.  I’m thankful for that.  Others on it that long have had to have hip replacements! Nasty drug.  But necessary at times. Kathi

Response:

Hi Cyd! You wrote:

<<I had three straight months of Solumedrol/oral prednisone several years back. . . .Six months later, I broke my foot. Suddenly I started having occasional joint pains/pops. Now five years later, I have had 10 cavities and my wrists and thumb are painful to use>> Uh, oh!  How long does this stuff stay in your system?  I have taken more prednisone this year than I want to think about.  Every time I get off it, I say never again, but it is the only thing that can get me back on my feet.  I thought when I stopped taking it, the side effects would go away. Now I am scared.  Do you know of anything I can do to counteract these nasty side effects?  I already up my potassium and calcium when I’m on it. Take care!   Sylvia

Response:

>regarding the 26 grams of methylprednisolone. >any deression?

No hows your memory? Great thanks specifically word seeking and short term >conversational memory?

No problems at all with either elevated startle response? Nope do you see things in a >somewhat threatening light, tending toward aggresive responses to benign >situations?

No Cari

Response:

- Hide quoted text — Show quoted text -Teedclo wrote: > Michael Walker wrote: > >I was given prednisone last may for an attack and it cause Avascular > >Necrosis of the left hip. I had to have my hip replaced 7 weeks ago at the > >age of 40. Most people don’t know this is a side effect of steroids use. I > >was only given prednisone for a 7 day period and this is what resulted. > To put this in perspective:  over 14 months I had 26 GRAMS of IV Methyl > Prednisolone.  I had NO side effects..I repeat NO SIDE EFFECTS. and I knew all > about the risks of aseptic  avascular necrosis… That was back in 1993/94. It > is now nearly 1999 and my hips/joints.. ALL bones are fine thankyouverymuch. > Without the steroids I would be dead. > Do NOT be scared off my these RARE reports. > CAri > ]

Thank you, CAri for this.  Steroids certainly have many risks associated with them, but they also have mnany benefits.  That’s what needs to be considered.  Ask how often the avascular necrosis happens, and what is the incidence of other side effects.  Which of these side effects are reversible, which are life threatening, which are serious.  This is no guarantee that you won’t have a bad reaction, but you can factor that in.  If it’s a matter of losing my sight to ON, or losing other functioning, I probably would choose the steroids.  So far, Ive had no permanent adverse reaction and a fair amount of benefit. Of course, the odds don’t matter if you’re the one who ends up with a serious problem.  But, you’ll be making your decision based on what feels right for you by weighing potential risks with potential benefits.  May we all make the right choices. Irene

Response:

Teedclo >>any deression? >No >hows your memory? >Great thanks >>specifically word seeking and short term >>conversational memory? >No problems at all with either >>elevated startle response? >Nope >>do you see things in a >>somewhat threatening light, tending toward aggresive responses to benign >>situations? >No >Cari

Denial is the first symptom of steroid psychosis. You must have it bad. Rob

Response:

The message <19981021204922.01229.00004…@ng135.aol.com>   from  syl…@aol.com (SYLV77) contains these words: > Hi Cyd! > You wrote: > <<I had three straight months of Solumedrol/oral prednisone several years back. > . . .Six months later, I broke > my foot. Suddenly I started having occasional joint pains/pops. Now five years > later, I have had 10 cavities and my wrists and thumb are painful to use>> > Uh, oh!  How long does this stuff stay in your system?  I have taken more > prednisone this year than I want to think about.  Every time I get off it, I > say never again, but it is the only thing that can get me back on my feet.  I > thought when I stopped taking it, the side effects would go away.

The therapeutic steroids do not hang around in the system very long. I think we’re talking days. Long term steroid treatment can suppress the body’s own steroid secretion. Short courses do not. The problems of osteoporosis etc often relate more to the length of time on steroid rather than the total dose. Avascular necrosis is a well known but rare complication of steroid treatment. > Now I am scared.  Do you know of anything I can do to counteract these nasty > side effects?  I already up my potassium and calcium when I’m on it.

Don’t be too scared. Stay as active as you reasonably can. Try to get off steroids soonish. Ask your physician about the need to taper and follow the advice. Rapid withdrawal of long-term steroids can be very dangerous. As with all treatment there’s a balance between risk and benefit. — Helen D. Vecht                   #############  WARNING!  ############ helenve…@zetnet.co.uk          #   If you *dare* send SPAM to me,  # Salisbury, Wiltshire,            #   I’ll repost it to your ISP.     # Great Britain                    #####################################

Response:

>Uh, oh!  How long does this stuff stay in your system?  I have taken more >prednisone this year than I want to think about.  Every time I get off it, I >say never again, but it is the only thing that can get me back on my feet.  I >thought when I stopped taking it, the side effects would go away. >Now I am scared.  Do you know of anything I can do to counteract these nasty >side effects?  I already up my potassium and calcium when I’m on it.

Sylvia,         Wish I could tell you how to fix it, but I can’t. Soething which was recently recommended to me was glucosaimine sulfate(?). It’s in the herb/vitamin section of Walmart, recommended for the health of old people’s bones, might help us. Cyberhugs,         Cyd  :) To reply to me, remove the REMOVE from my address. Any unsolicited email shall be treated as harassment and reported to the proper authorities. I charge $500 for every spam received, as a processing fee.

Response:

>>any deression?

No,but my former neuro thought so. Note I say former. My current neuro thinks the former neuro was feeding me a load of bunk. what my former neuro thought was depression was adult ADD, which she claimed could not exist. >hows your memory?

Lousy. >specifically word seeking and short term >>conversational memory?

Again, lousy. >elevated startle response?

Yes. Oh god, yes. A lot of my friends have told me I scare easily now, when iut’s just a reaction to loud sounds and such. >do you see things in a >>somewhat threatening light, tending toward aggresive responses to benign >>situations?

What exactly do you mean? One thing I do know is that I tend to fly off the handle a lot nowadays. I’ll get my dander up about the darndest things, and I panic a lot easier now. I also tend to cry a lot easier too. Every since then, I’ve been prone to crying spells at the stupidest things, like sappy commercials. I see it happening, and I’m not really upset, but it just triggers a cry reflex. Last night, I saw something on Dateline NBC about some woman with Scleroderma being semi-cured by a bone marrow transplant, and I cried with joy, which was something  I never used to do. I’m watching it with a cool level head, but the tears just pour out. *sigh* Cyberhugs,         Cyd  :) To reply to me, remove the REMOVE from my address. Any unsolicited email shall be treated as harassment and reported to the proper authorities. I charge $500 for every spam received, as a processing fee.

Response:

On 21 Oct 1998 14:02:53 -0400, Cyd <c…@REMOVErci.rutgers.edu wrote: >Unfortunately, Cari, some of us aren’t so lucky. >I had three straight months of Solumedrol/oral prednisone several years back.

IV Solumedrol is a very effective initial treatment for MS. I’ve had it a half dozen times over several years  with good results. Stay away from oral prednisone pills.  I’ve only heard bad things from using them. Unfortunately, the good effects from IV Solumedrol are temporary. Oh well… I’ll take whatever I can get!

Response:

The message <70mq2p$…@nnrp4.farm.idt.net>   from  "rob" <22rdunc…@idt.net> contains these words: > Denial is the first symptom of steroid psychosis. > You must have it bad.

Is this called-for? Helen W:(

Response:

The message <19981021204922.01229.00004…@ng135.aol.com>   from  syl…@aol.com (SYLV77) contains these words: > Uh, oh!  How long does this stuff stay in your system?  I have taken more > prednisone this year than I want to think about.  Every time I get off it, I > say never again, but it is the only thing that can get me back on my feet.  I > thought when I stopped taking it, the side effects would go away. > Now I am scared.  Do you know of anything I can do to counteract these nasty > side effects?  I already up my potassium and calcium when I’m on it.

Sylvia, I have only taken it twice and each time it took 5/6 months before the side effects wore off.  And these were just the ones I was aware of, never mind any nasty cumulative ones which might be building up with each time it is taken.  Definitely not a drug to be taken without very careful weighing up of the costs/benefits and a full understanding of all its potential side effects both short-term and long-term. Helen W:)

Response:

hi cari regarding the 26 grams of methylprednisolone. any deression? hows your memory? specifically word seeking and short term conversational memory? elevated startle response? do you see things in a somewhat threatening light, tending toward aggresive responses to benign situations? hypercortisalemia trashes part of the hippocampus and amigdala. and 26 grams of solumedrol is definitly going to qualify as hypercortisalemia! the symtoms i just listed are consistent with too much cortisal in yer system and the ‘roids we get are all homologus(sp) as in copies of cortisal. while i believe that because of too much endogenous cortisal most who contract MS already have many of these symtoms, ‘roids make ‘em worse. they occupy the glucose receptors at the synaptic level and that means the dendrites go hungry. when they don’t get glucose the dendrites and axons are more vulnerable to insult and eventually die. early on in the preocess the dendrites can recover. but frequently they don’t and then the axons follow. most of the brain doesn’t have a problem with ‘roids. but the hippocampus is densly packed with receptors for glucocortical steroids. so it’s damaged by too much. while osteoperosis is bad news, it can be monitored and if caught reversed. once the axons in the hippcampal complex are gone they are gone. at least using the current tech most neuros are willing to engage. best wishes ed — ———————————————————————–   "The whole business of his life was in the plunder of his gaze…"

Response:

Unfortunately, Cari, some of us aren’t so lucky. I had three straight months of Solumedrol/oral prednisone several years back. I had never had a cavity nor a broken bone before. Six months later, I broke my foot. Suddenly I started having occasional joint pains/pops. Now five years later, I have had 10 cavities and my wrists and thumb are painful to use (and no, it’s not carpal tunnel, they’ve already checked for that). My left ankle pops with regular frequency, and my shoulderblades even pop, which is NOT normal. Never had ANY of these problems before prednisone. That was the only stuff they gave me at the time, so it’s not like I have any other medication to blame. I admit, the stuff helped me at the time, but has hurt me in the long run. I’m gld that prednisone didn’t hurt you. But for some of us, it did more damage than it helped. Since I took the semester off at the time, I could have taken the extra time to bounce back, instead of forcing it with corticosteroid use. Wish I had known then what I know now, I would have refused the use of the stuff. Cyberhugs,         Cyd  :) To reply to me, remove the REMOVE from my address. Any unsolicited email shall be treated as harassment and reported to the proper authorities. I charge $500 for every spam received, as a processing fee.

Response:

I agree with Cari on this one. This is very rare, steroids can be lifesaving. For somebody to get this complication on such a small amount of steroids is extremely rare. I have an aunt with RA taking pulsed steroids for over a decade, she is FINE. Teedclo <teed…@aol.com> wrote in article <19981021113644.02584.00003…@ng01.aol.com>… – Hide quoted text — Show quoted text -> Michael Walker wrote: > To put this in perspective:  over 14 months I had 26 GRAMS of IV Methyl > Prednisolone.  I had NO side effects..I repeat NO SIDE EFFECTS. and I knew all > about the risks of aseptic  avascular necrosis… That was back in 1993/94. It > is now nearly 1999 and my hips/joints.. ALL bones are fine thankyouverymuch. > Without the steroids I would be dead. > Do NOT be scared off my these RARE reports. > CAri > ]

Response:

Michael Walker wrote: >I was given prednisone last may for an attack and it cause Avascular >Necrosis of the left hip. I had to have my hip replaced 7 weeks ago at the >age of 40. Most people don’t know this is a side effect of steroids use. I >was only given prednisone for a 7 day period and this is what resulted.

To put this in perspective:  over 14 months I had 26 GRAMS of IV Methyl Prednisolone.  I had NO side effects..I repeat NO SIDE EFFECTS. and I knew all about the risks of aseptic  avascular necrosis… That was back in 1993/94. It is now nearly 1999 and my hips/joints.. ALL bones are fine thankyouverymuch. Without the steroids I would be dead. Do NOT be scared off my these RARE reports. CAri ]

Response:

Hi everyone! I was given prednisone last may for an attack and it cause Avascular Necrosis of the left hip. I had to have my hip replaced 7 weeks ago at the age of 40. Most people don’t know this is a side effect of steroids use. I was only given prednisone for a 7 day period and this is what resulted. If you have any questions for me or just want to talk, my e-mail is M…@SYIX.COM GOD BLESS!         michael

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