Prednisone tapering. Are your side effects WORSE as you taper?

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wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 363
   Posted 3/10/2010 5:34 AM (GMT -7)   
So I was on 60 mg of Prednisone, now I am tapering down.  My Dr had bumped up the dose from 40 to 60 (that's when I really started to get the puffy cheeks and mood swings) and since I am starting a new medicine he is tapering me off.  He wanted to get my back down to 40 quickly so I went from 60 to 50 in one week then down 40 in another week.  I am at 35 now. 
 
Here is the problem.
 
I feel like tapering is causing me more mood swings than being on a high steady dose - has anyone experienced this?  I KNOW prednisone sucks and it's terrible all around, but I have been so irritable the past 3 days that I am actually trying to avoid people because I am feeling so *****y.  My heart races and I am constantly in a state on anxiety.  I take klonopin for the anxiety but it's still not enough to get out of my head!  It's kind of like experiencing the worst PMS I have ever had.  I am feeling better physically in terms of my stomach but here are my side effect symptoms from the prednisone (disclaimer: I am really just looking for someone to commiserate with here):
 
* high anxiety
*racing heart
*extreme irritability
*fixated on things that are annoying me
*irritated with other people (justifiably so, but may be more so than if I wasn't on pred, I could deal with it)
*insomnia
*can't sit still
*overeating
*can't feel a sense of calm and peacefulness
 
I am thankful that I am feeling physically well enough to exercise but when I was at the gym yesterday you would have thought the wheels on the elliptical machine would have flown off I was going so fast.  I am doing all the things I should be doing that usually calm me: yoga, prayer, breathing exercises, etc etc but it's not working most of the time.  I have been on prednisone several times in the past but don't remember it being this bad. 
 
These are all things that happen when I am on a high dose but they seem to be WORSE as I am tapering.  I am tapering slowly, down 5 mg every 5 days or so, but SERIOUSLY, enough with the side effects!!
 
Thank you for listening. :)  As soon as I locate my normal sunny disposition I will post a happier thread.
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, starting Humira, 55 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 366
   Posted 3/10/2010 8:35 AM (GMT -7)   
Hi Wednesday!

I actually just started more Prednisone this morning since the Remicade doesn't seem to be working for me anymore :( I wasn't that excited about going back on the Pred, but my fevers are out of control, and I'm hoping it stops them. Did the Pred stop your fevers?

I do remember when I was first diagnosed and on Pred, I felt like you. I didn't have very many side effects until after I had been on it for a while and started tapering. I'm not sure if it builds up in your system and then that's why it possibly affect you more? I'm hoping I don't have to stay on Pred long, but I guess I'll have to see how it goes. I do remember feeling anxious, moody, excessively hungry and having a high heart rate. I'm sorry you have to deal with that.

How is the Humira working out for you so far? That's my next option in meds. I'm still waiting to get the test results back yet to see if I've built up antibodies. I'm sorry, I looked for the sites that talked about Humira working after Remicade failed, but I couldn't find the exact ones. I really hope it works for you (and for me too if I switch to it).

Hang in there. I'm sure in a few days I'll be complaining about the pred side effects, so we can commiserate in our prednisone glory.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 3/10/2010 8:42 AM (GMT -7)   
I always feel worse for about 2-3 days after each reduction. More joint pain, crankiness etc. So you are not alone. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

karasmommy
Veteran Member


Date Joined Mar 2005
Total Posts : 589
   Posted 3/10/2010 11:27 AM (GMT -7)   
I'm with Nanners, whenever I taper down I get a "backlash" of symptoms and mood swings that last a few days then I even out - especially if I am on 40mg or more to taper down from - I think it also depends on how fast you taper down too...
Ellen
Diagnosed with Lupus - April 2002
Diagnosed with Crohn's Disease (and all the lovely things that come with it) - January 2003 (problems since early 1990)
Fibromyalgia 2005 
Normal Meds:  Ambian 10mg, Flexeril 10mg as needed, Plaquenil 400mg, MTX 25mg Injection weekly, 1000mg Canasa Supp. as needed, Probiotics


artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 3/10/2010 12:24 PM (GMT -7)   
hey wednesday, i had all your syptoms when i first started my pred. and I was a casino dealer, I had did that for 5 years, but i got sicker and sicker, that job is the worst for cd and the drugs we have to take, i went on state disability, i could not deal with the insane gamblers or my pit bosses, it wasn't a good mix, for me anyway, my wife and i have a home based art business so we're opening new public gallery this weekend, now I work at home and when I need to lay down i do or when I need to run to the can i do, or if I'm feeling no good I stop and go in the house and lay down, we just hope we make money, we're on the obama cobra plan for at least 15 months, $250 for the both of us, but i do no what you are going thru. it sucks at best.

artist guy


Aerosmithkat
Regular Member


Date Joined Aug 2008
Total Posts : 21
   Posted 3/10/2010 6:04 PM (GMT -7)   
I'm currently on a 40mg taper myself. I'm taking 10 mg now and should be tapering down to 7.5mg tomorrow. I noticed since i hit 15 mg, that i've been having moderate anxiety and pretty much all the symptoms the OP posted. I actually went to the ER when it first happened because i thought i was having a stoke or heart attack. I was diagnosed with hypertension/panic attack. For me, the whole thing is a double edged sword. I'm trying to get off the pred as soon as i can, but my crohn's has been acting up a little due to the constant anxiety i've been having, so i'm leery of getting off and going back into a flare. I'll try to let you know on here if my symptoms improve with the tapering off of the pred.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 3/10/2010 7:03 PM (GMT -7)   
I've noticed that as well. You get so excited that you're going down, and then you're like, GET OUT OF HERE SIDE EFFECTS!!! But it really pushes you to want to taper.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
 
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas.
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 30mg Prednisone (Tapering SLOWLY from 40), Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Vesicare (for urinary retention). 


rebeccak87
New Member


Date Joined Mar 2013
Total Posts : 7
   Posted 3/17/2013 9:04 PM (GMT -7)   
Hi all, I was just wondering the same thing. I was on prednisone roughly 40mg-20mg from August to December and my hair began falling out I think in December. It was very bad, over 90 strands just from brushing it alone. I have probably lost 1/4 of my hair. It's now been 3 months since my last dose of it and I am just wondering if anyone else has gone through this and when they think it may stop? I've also seen a dermatologist who thinks it is from the prednisone and said he thinks I am at the end of it, but, it's still happening, not as bad but still going on. I am also taking amitriptyline 25mg which I began in November. My big concern was if the amitriptyline is also partially causing the hair loss- however- I don't want to get off of it as it is the only thing that helps my migraines. If it doesn't stop soon though I will probably be forced to try to get off it. Every doc thinks its the prednisone, but wondering if anyone else can relate or has had any experience like this. Thank you.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 6028
   Posted 3/18/2013 8:06 AM (GMT -7)   
@rebeccak87 - You'd be better off making a new thread. People don't tend to answer in old threads that have been bumped up. I can't really help you, as hair loss is not something I've ever suffered from, but it does seem to be a fairly common side-effect of many of the Crohn's meds. (Dunno about Pred, though.)

LeslieADK
New Member


Date Joined Nov 2013
Total Posts : 3
   Posted 11/10/2013 8:18 AM (GMT -7)   
I've been on prednisone for a little over a year for rheumatoid arthritis. My daily dosage went as high as 20mg after an allergic reaction to Plaquenil, but most of the time was at 10mg. I've successfully tapered to 5mg by going VERY slowly: 1mg every two weeks. I definitely had some mood swings and was very tired. I tried to help myself by really eating clean and taking a food-sourced multivitamin from our local food co-op. Now I'm trying to get off it entirely and my rheumatologist is having me taper by 1mg per month. Oddly, NOW I seem to be having the backlash symptoms others have described (increased symptoms - particularly joint pain, for me). I so desperately want to get off this stuff I will just try to stick it out. I've noticed that on days I can drag myself out the door for a walk - even a short one - I do so much better. I'm not sure if its the exercise itself or the vitamin D from sunshine or just a psychological lift, but it definitely helps me. I'm also giving myself permission to sleep as needed. I'm continuing to eat clean and take the multivitamin. I am hopeful I will get off this terrible stuff and still be able to manage my RA. I can relate to those who've said they've convinced themselves that prednisone upped their quality of life. It is an incredibly beneficial drug but the long-term effects are not insignificant. Good luck to all, and take care.

Qwerty333
New Member


Date Joined Nov 2013
Total Posts : 6
   Posted 11/12/2013 10:20 PM (GMT -7)   
I have only ever been on prednisone for a short period of time to treat a Crohns RA flare up. No side effects while taking the drug but as I tapered and came off the side effects kicked in. Mood swings and acne breakouts.

crohnsmommy33
New Member


Date Joined Jul 2012
Total Posts : 14
   Posted 11/12/2013 10:50 PM (GMT -7)   
Wednesday described exactly how prednisone makes me feel. I have been on a 40mg dose for six weeks, this has been a last resort to get me by until my appointment at research hospital. I know without it I would be much worse but the side effects are getting to me (and probably my family too). I want to start tapering my dose soon but as I have been through this in the past I know it will not be easy. I have to reduce slowly and seem to b very dependent on it. I always find my anxiety and mood swings are worse along with more stomach issues. One of a few things that I found helpful this time around is xanax. I am a stay at home mom so I don't want anything else that makes me tired or out of it. I take a really low dose and usually break in half. You can take just as needed when feeling anxious. Does anyone have any other suggestions on how to deal with the highs and lows of prednisone?
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