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mindy1974 03-24-2009 09:30 PM

Prednisone here i come! help...
I started prednisone today for the first time and Im really freighted by what I have read re: prednisone cause worst pain, depression, sick feeling coming off please let me know your experence of what happened when you first started. My doc got my lab work back and my immune system is whacky and he feels that we can get it under control with a mild course of prednisone. 10mgs first week and then tapper to nothing for the next 3 weeks. I have to be very careful of my mood disorder and sleeping problems so I am on the look out for that. Did it help you get out of a flare? I would enjoy some feedback!
Thank you!

goldenwings 03-25-2009 11:25 AM

Re: Prednisone here i come! help...
Hiya derlinda,

This is only from my own personal experience and not in a doctor type of way.

I have been taking steroids/prednisone for more than 30 years since I was little 'un because I was so very, very ill with SLE and also had Juvenile Rhumatoid Arthritis. Personally I have not experienced any major problems with this medication. I started on massively high doses and have gradually learned how to 'up and down' the dosage to suit my needs.

For me it was a life saver and I am forever grateful to the doctors and my parents for making the hard decision to put me on it. Thing is though at the time there weren't the wonderful medications there are now so it was a definite certainty for me to have. I still take it every day.

One thing I did have at the beginning of my treatment was a 'moon' face and a bit of weight gain but as I said I was on such a high dosage at the time. I did not have any major problems which some people say they have, so I have been lucky in that.

Your dosage is what would be used as a 'maintenance' dose and I am confident that for a short period of time and in these quantities you shouldn't have any of the side effects that some people talk of. Side effects of most medications come usually in 3 categories - Common, rare and serious. Not everyone and in a lot of cases some people don't have any of the side affects at all when taking ANY medications. The thing is though that you must always ask a doctor because it is easy to 'blame' medications for things not feeling right within yourself when in fact it could be something entirely different that is causing the problem.

Never take OTC medications either without checking that it is safe to do so. These can cause interactions and make you unwell. Even a simple cough linctus must be checked out before purchasing it.

The main thing with prednisone is to remember is that you should not stop taking it abruptly, even if you feel better. Your adrenal gland has to balance itself out, even on a smaller dosage so be sure to take it for the right period of time and in the prescribed amounts.

The thing is derlinda your doctor should have checked all of your records to make sure that you will be ok on prednisone with regard to your mood disorder and sleeping problems and he will have come to the decision knowing this about you. It seems as though he believes the positive outcome of taking prednisone outweighs the worry he has of your other problems for the time being. I am sure he has worked all of this out and thinks that a short term course of steroids will do the job for you - I certainly hope so.

If I can help further, please let me know.

Take care, goldenwings :angel:

Peggy L 03-25-2009 11:30 AM

Re: Prednisone here i come! help...
I have diffuse scleroderma and was put on prednisone at the beginning of my treatment. I was on it for a very short time as I had a terrible reaction to it. To begin with I couldn't rest or sit at all. I was up 24 hours a day and couldn't stand it. I would never go on it again as the feeling of being so jittery and hypped up was absolutely terrible. I wish you luck but if you start to feel any bad reactions to it don't hestiate to wean off of it as soon as you can. Once you are on this it's really, really hard to get off of it. I know of alot of sclero patients that wean off of it when they've been on it for a while and have such a terrible time doing that.

Warm hugs,


mindy1974 03-25-2009 11:33 AM

Re: Prednisone here i come! help...
Youre the best goldenwings!
Its day 2 and I feel dizzy but all in all ok. I already feel less pain in my hands and feet. Thanks for telling me about your positive reaction to the med, I really needed to hear that all experience are bad. I hope that the tapering schedule he is planning is slow enough to keep me from getting a rebound sickness.
I will keep you updated!

goldenwings 03-25-2009 11:44 AM

Re: Prednisone here i come! help...
Hiya derlinda,

As I said the post I put up first was only from my own experience and you will most probably get more replies from others memebrs of the forum giving you their personal accounts of it. The thing is though which is the most important thing I think is that you are feeling a little better and I am so happy for you. I do so hope you continues to improve.

Also have a little think about what the dizziness 'might' be - could be anything and not necessarily the steroids. As I said previously how medications of any type affect one person do not necessarily affect another in the same way.

Take care, goldenwings :angel:

watoozie 03-25-2009 07:21 PM

Re: Prednisone here i come! help...
During a bad flare, Prednisone was a wonder drug for me! I was on it for 3 months. My husband hopes I don't have another flare any too soon - the Prednisone made me meaner than a snake!!!!

mindy1974 03-26-2009 02:45 PM

Re: Prednisone here i come! help...
miss goldenwings! well i was up all night crying and itching my skin untill i bleed (sorry thats gross). then my mood was so nasty that i did not even tip my waitress!! im stoping the pill now. i was on 10, 8, 5 and now nothing. the doctor said that i should have no withdrawl because it was so low and fast. i hope so!

Peggy L 03-27-2009 10:18 AM

Re: Prednisone here i come! help...
:wave:So sorry you had a reaction but what you went through sounds about as fun as mine was. Like I said, I could not settle down at all and I too itched............I had forgot about that fun. I'm glad it's early in the game to wean off of this. Now you will just have to go on to something else instead of the prednisone.


mindy1974 03-30-2009 06:15 AM

Re: Prednisone here i come! help...
hi girls! well i gave it a try and it was huge floop! to bad because the first 24 hours made my feet feel great! i hit a big wall of depression and ened up drinking over it (and i'm sober- so that was a bad move). i guess we will try somthing else next time.
thanks for the feed back,

goldenwings 03-30-2009 08:38 AM

Re: Prednisone here i come! help...
Hiya derlinda, as you said you tried with the pred and it didn't work for you but I know you will give something else a go if you have to. Work with your doctors and in time there will be something that will do the trick for you hopefully.

Keep on coming here for a chat and support and that will go a long way to helping you cope with things.

Take care,
goldenwings :angel:

mindy1974 03-31-2009 10:05 AM

Re: Prednisone here i come! help...
thanks to you all! so happy i had you all to turn to while i went on the rollercoaster ride! i'm doing ok, the snow is hard on my finger tips but thats not to hard to take care of!:D

Angel MJ 04-08-2009 01:38 PM

Re: Prednisone here i come! help...
hi derlinda
i don't think prednisone/ cortisone is all that bad ...
don't get me wrong i avoid long term use but have been on it for a period of 3 years with litttle to no side affects ... only once on a short course did i get the swelling (went from 50kg to 66kg) but after stopping i went back down ...
i now use it to get me thru the really bad flares (30-60mg for 5 days) always on perscription ... rarely an injection ... just to get me through ... really got me thru some tough times!
i guess that i have lived with depression for so long before ever being diagnosed ... that i never connected re-lapses to prednisone. will be keeping an eye on that - Thanks:)

goldenwings 04-09-2009 06:37 AM

Re: Prednisone here i come! help...
Hiya Angel

Personally I too would not even think of my depression having anything at all to do with prednisolone. My life in general has at times been rough and circumstances have been hard. Nothing to do with my wonderful family life I hasten to add, but things like bad personal relationships for one.

Other things like losing all of my family without warning is another - things like that really impacted on my life for obvious reasons. This is the root cause of my own depression, not medications. I know this for definite.

I had a bit of a weight gain initially but since then nothing has happened to me that I would connect in any way to the medications. As I have said I take prednisolone every day and have done for over 30 years. It saved my life at the time of first going on it and I am so thankful for that.

Like I have always said here, some medications adversely affect people and some other people don't have any effects whatsoever.

We must all learn about our own bodies and know how it feels from day to day and not always look to blaming or thinking it is caused by medications. It could be something entirely different that is causing the problem and we need to discuss these things with doctors and rheumatologists.

Take care,

goldenwings :angel:

Angel MJ 04-10-2009 02:21 AM

Re: Prednisone here i come! help...
Hi GW, thanks for the kind & wise words ...
i too believe that prednisone is a lifesaver ...
i have had organ: heart (minor=only once) involvement so the prednisones is why i am able to type to you today ...
i have been avoiding it with daily use as i am 32 and really still want to look at having a kid/s ... the struggle is hard ... i am certainly meant to be on plasmoquine (but the cost of living & the blurry vision is why i have not been on it for a year) i have coped ex meds before but was under medical supervision ... i will need to change this soon as i am driving myself nuts at the mo ... and need to be clear for at least a year before trying 2 get preg ...
i am always keen to blame my depression on everything else ... except what it is ... ME
i am deeply sorry for your losses. Loss is tragic and being left behind is hard ... i have lost most my immediate family (not at once ... but gone)

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