Body Ache with each decrease of Prednisone??

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Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 9/23/2008 5:00 PM (GMT -7)   
Hey everybody, I hope everyone is doing well. I've been on a Prednisone taper for about a month and a half now, and lately I've noticed that 2 or 3 days after I've gone down a few mgs (like from 15mg t0 10mg for example) I have extreme body ache and headaches that last for days! Is this some sort of withdrawal effects that I'm expeiencing? Does anybody go through this at all??
Jessi
 
Auto Immune Disorder of Colitis/Chrohns/IBD; Anxiety Disorder; Mild Asthma;
Tappering off of Prednison: now 10mg, Remicade infusions now moved from 2 weeks to 4 weeks, Cybalta, Prevacid, Famotadine, QVAR
Lately: Ativan, Temezepam, Gummi Vites, Aceteminophine's
 
 
 
 
 

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/23/2008 6:05 PM (GMT -7)   
I'm going through the same symptoms, Jessi. I've been tapering down from 40mg. I'm currently on my 3rd day at 5mg and my back feels like it's going to snap in half. Last week's taper it was my knees that hurt. And the headaches for me on Prednisone are pretty constant, but they do get worse a day or two after each taper. I'm not normally an "achy" person, and I'm not currently on any other meds (I'm guessing the Humira is gone by now), so I'm pretty confident it is the Prednisone.

~trudging through the taper right next to ya~
We're almost done, though!
Good luck with everything.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 9/23/2008 6:49 PM (GMT -7)   
I have generally felt achy on Pred this time as well.... Not sure why, but I do believe it's a normal s/e. Part of the weaning process.

For now, I'm stuck at 30mg, but might be going up to 40mg soon. Hopefully I can join the taper club soon!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 9/23/2008 7:25 PM (GMT -7)   
Thats what I'm confused about as well - I've been on Prednisone countless amounts of time before and I don't recall pain THIS bad. My back and head are pretty bad all day long throughout the whole Pred. expeience, but the achy and shaky feeling - my heart beats really fast - AND eye pains..they're extreme. Just to function I have to take Tylenol coedine..its the only thng that really helps with all angles. But of course i try not taking too much of it which hasn't been happening lately.

Kaycie, are you stuck on 30mg because the Remicade didn't work? And what exactly didn't the Remicade work on? (I started it for extreme joint pain and stiffness, and also for the GI problems too)

Thanks everyone,
Jessi
 


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 9/23/2008 7:38 PM (GMT -7)   
maybe you are tapering too fast? i only got headaches and joint pain when i first started on it and when i tampered i didnt get ne side effects
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 9/23/2008 8:12 PM (GMT -7)   
You know I've been feeling maybe thats been the reason for it but Its already been so hard to get my docs to understand just how badly the pred messed me up this time and if they're not going to or can't do anything else about it then I'd rather just get off of it as fast as I can and I guess thats what they're doing. Is it dangerous to go too fast?

Eva have you had the J-pouch surgeries done?
 


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 9/24/2008 3:36 AM (GMT -7)   
nah,im not sure if its dangerous,my GI told me to monitor my own taper i was on 35mg a week dropped 5mg a weekly,i was like u, cldnt give a dam if i felt bad i just wanted to be off the stuff,thou wen i got dwn to 5mg i was told to taper 1mg a week because i was on it for so long and the GI sed if i felt bad doing that ,do it slower.Also achey joints can be linked to a bad flare,b4 my surgery when i got up in the mornings my knees,wrists and elbow joints use to hurt really badly use to have hot shower to help and regular panadol every 4 hours,felt like an old lady :( what sort of head ache is it? my old GI tld me to call him if i get a headache like sum1 pushing hard on the top of my head or sumthing like that :S
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/24/2008 6:40 AM (GMT -7)   
Everytime I wean down on Pred I always have achy joints for a few days. I think this is a normal side effect with Pred.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 9/24/2008 4:56 PM (GMT -7)   
I'm pretty convinced at this point that it is. The only thing I feared is the joint pain being the actual joint pain from the flare that I had which is what put me on the Pred in the first place. I was diagnosed with Colitis 8 years ago, had the whole 3-step J-pouch surgeries, and last year this whole issue started with dissabiling joint pains which are of course linked to my flares. Remicade was a lifesaver, then I had to stop it for a while but that just sent me right to the hospital so now I'm back on it with the Pred. So at this point I'm just so sick and tierd of going back and forth with pain and meds and refuse to belive that there is any way I could STILL be having the "flare" joint pains while being on TWO immuno-suppresants (don't know how to spell that).

Has anybody here had the surgeries?
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/24/2008 5:08 PM (GMT -7)   
Hi I looked up prednisone withdrawal symnptoms when I tappered you might be going too fast for your body to replace things . I have joint pain now I have been off the pred since March it is not really bad but I did not have it before my knuckle on my right hand index finger is sore most of the time now. Hope you get things gooing more smoother with your taper. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 9/24/2008 9:09 PM (GMT -7)   
Jessi - I've been on Remicade for nearly 2 1/2 years. Yes, it has finally come to an end. I'm a bit torn over it, but going to try a new trial drug called ABT-874 starting soon. I LOVED Remicade and I always felt great on it, but I had a HUGE flare in July and with doubling dosages and shortening cycles, well, I just can't get off the Pred and on Remicade alone... so it's not doing it's job. In fact, there is some belief other parts of my colon are now affected. This was a flare that started back in March, but just got out of control come July and the Remicade could no longer do it's job. I'm frustrated, but not much I can do. Looks like I might be going to 40mg soon, like tomorrow. My gut has just been in pain the last several days...

As for the joint pain, could be weaning too fast, but I think 10mg is safe. You could try weaning 5mg a week to see if it helps you, but I've always been able to do rapid weans of 10mg/week, until the last week when I do 5mg for a week. My GI did not think that's too fast, but if you are showing signs of something like this, then I guess it COULD be too fast for you, KWIM? That said, I have just ached PERIOD from being on Pred this time... not sure why...stress can cause your body to ache too.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 9/24/2008 10:28 PM (GMT -7)   
Well I went down from 10mg to 7.5mg today and I feel ok today - for the first time in the afternoon (the am was full of aches and shaking had to take tylenol 3) I actually felt a little bit of my old self shining through the cracks. But again, the effects fron the tapper seem to start a day or two later for some reason so I didn't really expect much today. And btw, I DO only tapper at 5mg a week, and even that I just started cause at first it was like 5m every two weeks. If I see that my symptos do get worse (my abdominal pain has been increasing too) then I suppose I will have to say somethin to the doc an just slow down the process-better than getting off and then flaring up again.
 
'm really sorry to hear about everything you're going through kaycie - It really takes a toll on you to be on both the Reicade and Pred and still not feel your best thats not how it should be and thats one of the reasons I had stopped the Remicade before, but nothin else would work on me and I would get such crippling joint pains and stiffness once again..I too really felt like an 80 year old lady! So when I wa hospitalied for a really bad flare (joints, diarrhea, pain, etc) last month, they of course pumped me with Pred, Flagyl - the works - and then like 2 wks later started me back up on the Remicade except this time at a lesser dose than I was on before. I hope it works. I'm guessing though that if I don't see much relief than that perhap first we'll just try going bk to my usual dosage, however hard it may be on my immue system and poor lungs.
 
But all in all, as BAD as the aching is the WORSE part of this has been the anxiety. Its the wore feeling to be exhausted and jst want to sleep but hve your body not let you because its so hyperactive from the pred. I literally rock back and forth in my seat - even as I' typing now! You guys go through this too with the Pred right?

lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 9/25/2008 5:17 AM (GMT -7)   
I'm sorry you are having these problems. My daughter says the same thing. It does seem to be worse the faster the taper as for the headaches. However, she complains of body and joint pains everytime. Prednisone gives her multiple side effects. She believes it is evil and wishes she'd never have to take it again. Her Dr always tells us to slow down the taper if her symptoms are bad. I hope you are able to determine the source of your problems and definitely hope you are feeling better soon!
Dx w/UC in 2001 - controlled by diet.
Mother to 15 yr old daughter dx w/CD 9/07-  she had surgery for abcesses 11/07.  She is taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, prednisone 10mg-x6, 6 mp 50mg-x3, Flagyl 250mg-x3


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/26/2008 4:23 PM (GMT -7)   
Hi 2.5 a week might be a better taper for you and call your GI if you have this continue. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 9/26/2008 8:48 PM (GMT -7)   
I got those terrible headaches while I tapered. A few would turn in to migraines. Got really bad once I got to around 10 mg. So I went back to my doctor and he slowed my taper down, and gave me a good taper schedule. The headaches stopped, and I was able to get off the pred totally.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 9/27/2008 12:32 AM (GMT -7)   
It helps so much to know all this..thanks guys..its starting to make much more sense to me now. I'm just so scared; out of all these years and all the times I've taken Pred, I've never been so scared to have my doc put me back on it after getting this far in the tapper, or even after stopping it.

I'm having strong lower abdominal pain..much like the ones I had before I started the Pred. I've also been really constipated lately though. Again, I'm scared if I tell my doc this she will increase my dosage again. AND on top of everything, I've been fighting off the flue which everyone around me pretty much has, and I'm pretty sure I finally cought it - I have extreme body ache (the flue ache type) on top of body ache, and my throat is starting to hurt. Great huh?
Jessi
 


jimsgirl
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/27/2008 1:38 AM (GMT -7)   
I too, experience very achy joints and have been tapering off prednisone over the last year. Finally off now but still having joint pain. Hoping to also find answers and solutions. Took the prednisone for an auto-immune disorder.

Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 9/27/2008 11:54 AM (GMT -7)   
What type of auto immune disorder?
 


babi
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/13/2008 3:09 PM (GMT -7)   
okay i was wondering how long the achey flu like feeling will last?

Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 10/13/2008 8:54 PM (GMT -7)   
I guess as you can see from this poll - its different for everyone. Every time I would tapper off the Pred my body would ache with the flue-like feeling, headaches, chills, etc. It would normally last for a few days each time, but the frustrating part was that as soon as I would be starting to feel better, it would be time for another tapper, so I've been like this for almost the past 2/3 months.
I'm currently stuck on 5mg. But on Friday I had a Remicade infusion and usually they give me about 50mg of steroids with it as a precaution so I've been aching - body and joints - even as we speak :/ I really believe its a witdrawl symptom.
Dx w/ UC 2000;
J-pouch surgeries in 2002 - colon removed except for last tiny part connected to rectum which keeps inflaming;
Currently in remission from August hospitalization and tappering off Pred. (now 7.5mg);
Remicade, Cymbalta, Prevacid, Famotadine, QVAR,
Auto-immune disorder, anxiety disorder, mild asthma (chronic bronch), & Crohns related arthritis.

Jessi


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/13/2008 9:06 PM (GMT -7)   
yup, sounds like nasty pred withdrawal to me. i was on pred at one point for a year, and i had to cut by 1 mg every 2 weeks once i got under 10 mg. was nasty but eventually was able to get off. make sure you get your blood looked at and see how your electrolytes are... mine were pretty slammed.
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?

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