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Advice for weaning off Prednisone

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Posted 6/19/2014 8:41 PM (GMT 0)
Hi All,

Im from the Lymes/Lupus group as i have yet to get an official diagnosis of either the 2. (looking like lymes though!) ive tried many times to get off prednisone and my body literally shuts down, i end up in emerg with a BP of 71/52 and fever of 104. I get more prednisone and literally within an hour im okay. Its sickening.

Being sick is all new to me. Before this last year I was an average 20 year old. non smoker/drinker, athletic build.
can anyone give me advice on getting off the prednisone?? iam currently down to 5MG and havent been able to go any lower.
Posted 6/19/2014 8:47 PM (GMT 0)
horsegirl93,
I am so sorry that you are having problems weaning off of the prednisone... I to need to wean off. I was down to 2.5mg. daily and have had to go back up to 20 mg. a day due my medication that stopped working for my RA. I have been in a flare for quite some time now. That being said I am hating the fact that I am still having to take that much. I have the "moon" face and thick neck to go with it.... such a good med to cause so many side effects... I hope you are able to get off soon.
Hugs
Peggy
Posted 6/20/2014 1:03 PM (GMT 0)
oh Psbg i feel your pain with the moon face.......I had to renew my drivers license and my picture is horendous. Being down to 5MG I lost it thankfully, but when i went from 5 to 2.5 i ended up in emerg :(
oh such a wonderful drug but horrible at the same time
Posted 6/20/2014 2:40 PM (GMT 0)
Ask your doctor for help on this and ask for the 2mg pills and that way you can go from 5mgs to 4 mgs for awhile and then down to 3mgs...So ask your doctor for help and get scripts for the 2mgs, hope this makes sense to you...
Hope you'll be able to wean slowly off the pred...my doctor will give me a shot from time to time and that helps better and then I don't have to worry about coming off the pills...

I ended up in the ER once because of the medrol dose pack, that really hit me on the 3rd day and by the 5th day I went into a huge asthma flair and in the er getting nebulizer treatments...weird...but true!
Posted 6/23/2014 3:10 PM (GMT 0)
Please be very careful and cautious when weaning off prednisone.  The one time I was on it, I weaned myself off way too quickly and my adrenal gland almost shut down.  My mother was on and off of prednisone most of my life.  It always took her a long time to finally wean off the drug.  I realize prednisone is a lifesaving drug, but it is also a double-edged sword; it cuts both ways.

Elcamino

Posted 6/23/2014 7:05 PM (GMT 0)
elcamino thank you so much for your response. I surely do not want my adrenal gland to shut down that is for sure. When I start weaning off its usually 5mg. at the time and stay at one mg. for several weeks before going down again. I am so worried about the effects of this medicine. I have a huge moon face and my face is red all the time. I have gained weight but I know that I can work on that part. I am worried right now due to the fact that when have the weak spells that I have it feels as though my joints on my outer thighs and my shoulder joints are like jello. I dont want my muscles to wither away. Its a scary thing with these meds. I have finished my first complete round of rituxan so I am getting better but its a slow go.
Thanks so much for your comment.
I love this sight it has helped me so much
Hugs
Peggy
Posted 6/24/2014 5:36 AM (GMT 0)
Hi Peggy you didn't say how long you've been on prednisone that makes a big difference the longer on it the longer to get off it
I have been on prednisone for 25-30 yrs now and have been told Never to stop taking it as my body no longer produces it I usually take 10 mg day but fluctuate up to 50 then back down to 10 and have to be careful doing that
id say for sure contact your doctor and get a stepping down regime it will help
Posted 6/24/2014 2:16 PM (GMT 0)
BadDay thanks for responding... I have been on prednisone for approx. 5years. With fluctuating doses due to flares. I am currently on the20 mg. a day dose. I had got down to 2.5 mg. and was about to start lowering that dose when my orencia quit working. Boy has this been a roller coaster this time. So bad I missed work stayed in bed on and off for about 2 months... Finally got the rituxan infusion and it is now kicking in and I am better. Only have a weak / fatigue spell about once a day now. Very thankful for that. I am just worried about the prednisone making my muscles waste away. As I said my hip joints and shoulder joints feel like jello when I start to have the weak spell. Its been crazy for sure. Going to make sure I tell my Rheumy that when I go back on the 9th. He is really good about giving me a stepping down regime and it usually works. Just not sure its quite time yet as I am just now feeling better. What do you think?
Thanks so much for the info you give and I hope you have an awesome day and I hope you are feeling better
Hugs
Peggy
Posted 6/25/2014 2:40 AM (GMT 0)
I have been off it now for about 6 weeks after taking it for almost 2 years. Please make sure to talk with your Doctor and have a plan for this. I was very sensitive to the withdrawal and had to lower by 1mg about every 3-5 weeks, sometimes having to go back up to keep from going into a massive flare.

I had pretty extreme leg cramps as well as stomach cramps while coming off of it as well.

I personally hate this drug. Mainly because it was the hardest for me to come off of due to it being immediately helpful but having the worst side effects I have experienced in 20 years of RA. It serves its purpose though and I was grateful for it when I was so sick I could hardly walk. Once I saw some improvement on MTX and Orencia we started weaning off the pred. It was a long process but totally worth it.

I hope you have an easier time of it than me but don't rush things if your body has come to rely on it.
Posted 6/27/2014 3:31 AM (GMT 0)
For Sure it's a Good/Bad Drug
I Love what one Doctor said when he heard I'm on Prednisone he went in a singing voice;
" Ah Prednisone the Devils Drug "

Peggy if you've been on it 5yrs that's a while and you've come from 20 mg to 2.5 that's a Big drop id expect your Rheumy would offer increased medication or something to help the RA making Flare better to enable you to go lower on prednisone
Really Try to keep it down now you have gone this far so you can get off it early you Really Don't want the long term side effects like I have ( Osteoporosis, Round-moon face, Teeth rotted and removed, Diabetes ) and probably half my other stuff that I am unaware of the causes
Posted 7/11/2014 2:16 PM (GMT 0)
BadDay I was down to 2.5mg a day until the meds quit working for me back in February. Now I am on 20 mg. a day again. He told me I could go on up if I needed to to get thru this rough time. But I wasn't willing to do that. Hard enough to go up to 20. Now I am better but not scheduled to go back to ra doctor until 24th of this month. Gonna talk with him about weaning back down. I think its starting to cause problems with my stomach now. I'm really worried.
Peggy
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