Looking for info on why everyone says it's so hard to get off Prednisone. I've had a rough couple of weeks with swelling and pain, so much so that the doc put me on Prednisone. Previously was just on Ibuprofen and Mtx. Doc first gave me a Medrol pack for 6 days which was great, but day 7 the pain was right back with a vengence. Put me on 10mg Prednisone and switched me to Acetametaphin instead of iBuprofen, which calmed things to a tolerable yet still painful level. Plan was to use Prednisone to get me through to next appointment (end of May) where we were scheduled to discuss going on Remicade. Another flare last Thursday like the first one and the doc put me up to 20mg of Prednisone and pushed the start on Remicade up to this week (tomorrow). Again, increase in Prednisone has just taken me down to a tolerable yet still limiting pain level. I understand that the goal will be to slowly move me off the Prednisone after I start the Remicade tomorrow, which brings me to my question. What is it that occurs that makes everyone say how hard it is to get off of Prednisone? I'm more freaked about this than going on the Remicade.
Hey dgeg, welcome to the arthritis board. Ok, I'm going to offend everyoneIt's hard because pred is a synthetic corticosteroid. It replaces or increases what your body makes naturally. Coming off pred. too quickly is incredibly dangerous as you body doesn't have a chance to keep up - this can cause adrenal failure. You taper slowly to give your body time to aclimatise but even that can be difficult.
Hope that helps. It's a very basic desciption.
It helps, but so right of being a prisoner to it. I have been on it for a year and half and unable to ween off. Have tried numerous times and end up in a really bad way :( Once I eventually, hopefully, get off I will never go back on it. My mother has been on it for 16 years! Ahhhhh prednisone.....
Wow Lorster. I looked up the side effects and you are right. It never dawned on me to look this up and question the doctor as I would have taken anything at the time just to keep from feeling like someone was ripping my arm off. However, if there was no alternative I have to say I still would have taken it. The pain was simply to unbearable. I'll have to question the doc on alternatives so as to be informed if/when this occurs again, as I'm sure it will eventually. Thanks.
Scattered...thanks for your insight as well. I must confess, I failed biology, anatomy and all the other health related topics in school, so I had to look up adrenal failure after reading your post.
What I think I am understanding is that coming off of Prednisone too fast will/can cause:
However I'm not understanding how this is any different than what I am experiencing now with the arthritis and methotrexate. What am I missing?
Thanks....Diane
SarahP,
When you say you end up in a really bad way, what do you mean? Are you in pain? Are you depressed?
Thanks...Diane
Lorster you are so right and I am sooooo glad that my Dr. never gave it to me. She says that some hydrocodone with low tylenol in it is better for our bodies for the pain and 20mg injectable MTX brought my swelling down.Luckily I am not a depressed person and none of these meds have been able to take that away from me. Although I have heard stories of people getting extremely depressed and unable to stop crying. I have been lucky with staying positive, I really think it helps, I have also gotten no weight gain even when on high doses.
When I start to try ween off it seems to just kill any energy I may have and the pain that comes back with a vengence. Even though it seems the pain never goes away, it can always be worse. I am on the lowest dose I can stand. I want off it as well so I don't end up like my mom on it for life ( i am only 25).
I am on only 7.5 mg right now and I just can't seem to drop any lower and continue working etc because its terrible! I also have Crohn's as well so when I start dropping pred any lower the grumblings start there and I really really don't want any crohns flares! NOT FUN stuff
Hope this helps.
Everybody reacts to things so differently...
Hi
When you reduce the amount your pain/swelling/stiffness, comes back....like the next day! So, you have to find your way through the amount, but you don't want to do anything until the Remicade takes hold, (I've waited 2 months for it to work) also take 6 x 2.5 mgs of Methotrexate.
As was said earlier, it messes with you hormones and you stop producing them....so when you do start to get off please, listen to your doctor. The schedule will be clear to you. A 1/2 pill or less over another month or so! so this is long term.
It is true I wish there was another drug we could take to get us 'by' until the Remicade works, but I don't know of any. (some people take a lot of pain killers, and muscle relaxants which have their own problems) You could ask!! I'm down to 1 mg. , but lower really causes me a world of hurt, couldn't hold my coffee cup!!
It seems true that doctors are using this a lot, but it does the job. Patience was what every one kept telling me....!
Steroids are weird, Sarah L
Hi Diane!
Until RA hit my understanding of biology etc wasn't too good either but I've learnt a lot through reading and questioning my doctors. They put you on steroids because reducing the inflammation quickly can help slow down or prevent joint damage. I was put on pred. before I had a diagnosis and have heard of it being used as a diagnosis tool.
I've been on pred. since September last year. Started decreasing in November from 20mgs, the first steps (20 to 15mg) were easy then things got more difficult at 12.5. Had to put it back up to 15 when they changed my meds and am now decreasing very slowly. I'm now at 9mgs!!! Hurrah!
I've found that when I had pain and fatigue through decreasing it was either through making too big a jump or through not waiting long enough to get used to to the lower dose. I'm going to be on 9mg for a month before attempting the next step.
Some of the side-effects you've listed can occur if you are on pred. long term, like weight gain, insomnia, depression, food cravings.
I have a love/hate relationship with pred. Somedays I wish I had never been put on it but I know that if i hadn't been I would not have been able to function when I was diagnosed and would have had to drop out of uni.
Sorry! Bit of an essay there!
It helps you with short term for the inflammation but I don't think this drugThanks to all of you! I'm so excited to have found this message board.
SarahP...I did experience the uncontrollable crying when I went from 10 to 20 mg last week. In the middle of the night I woke and started thinking about due dates on tasks at work, that rolled into Oh My Gosh am I going to have to go on disability!? And down hill from there. It was a rough night. My poor husband didn't know what to do with me. He just held me and rocked me in his arms. I never thought it could have been sparked by the Prednisone. I just figured I'd finally reached my limit in terms of tolerating the constant pain and fatigue. Good to know for the future.
Hurts...sounds like your doc is putting you through the same med process as me. I'll be sure to follow instructions to the tee.
Scattered...thanks for the additional detail. No apologies necessary. Not only am I starving for info on all this stuff, but I am also an IT gal, so I like detail. Apparently this is some ugly stuff if it takes 6+ months to get off 20 mg. Congratulations on your progress. I'll be sure to keep you in mind as I start my journey off 20 mg over the next several months.
Thanks again for everyones insight. It really helped put my mind straight in preparation for beginning Remicade infusions tomorrow, and preparing to come off the Prednisone.
I have been on prednisone since i have been diagnosed (jan 2003) was on it mostly at 10mg w/ a pred pak in there occassionally but last january i had to go up to 15 mg which SUCKED!!! I didt have any weight gain while i was on 10 mg but it all came when i went up to 15mg :( So now i am finally able to come down on it, im on 13mg. My dr said i can go down 1mg a week if i am able and so far so good. I am increasing my mtx starting friday to 4cc (10mg). And i see my RD at the end of the month so hopfully i can get down to 10mg by the time i see him next and hopefully the increase in Mtx helps too.Hi
Remicade infusions were okay for me until I gotta new nurse who insisted on 'sticking that kneedle in the top of my hand (s), I TOLD HER NO I NEEDED IT IN MY ARM, she said, 'oh, we can't do that in case you need some immergency room vein') We always put it in 'your hand' . I said, I WON'T NEED ANY EMERGENCY ROOM'!. WELL, she tried the left, didn't work, then she tried the right hand and THAT DIDN'T WORK AS SHE WAS FISHING AROUND MY HAND FOR THE VEIN!!AND i WAS STREAMING, THAT HURTS!) Finally she went for 'the arm', NO problem!! THEN, she said, 'oh I'm not good at arms'.....the truth was SHE had a problem. She didn't even say, "I'm sorry, I hurt you"!! Which bothered me...she didn't care... . I will not go in to the office if she is the only nurse available!! I tattled on her! to my darling doctor, who said I'm sorry. My hand is still purple and that was last week!!
tHE drip took me 3 hours, so I brought a CD player, radio, and a good book. I slept through an hour and a half of it. They have lounge chairs you can tip back and almost lie down. It is rather goulish though, sitting around with 4 other people hooked up to IV's! What we go through to feel good, stop this ugly stuff from messing up our joints is amazing. Good luck, and let us know how you did (I'm still not finished with my 'infusions') oh, and it costs 00 per time, and I have to pay 0.....ugh. monthly
I still don't know for sure whether it or the methotrexate is helping, I KNOW prednisone works!
lol,Sarah