Horrible, excrutiating knee Pain at night - is it the Pred? Doc says No!

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fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 7/1/2009 5:40 PM (GMT -6)   
I have been tapering Pred for about 4 weeks now. I started at 60mg and am now down to 20mg (as of Sunday). Last night I woke up to horrible pain in both my knees around 4am. By 5am I had to get out of bed. By 6am I was sobbing like a baby and my husband was having to almost hold me down b/c I was writhing in pain. (and I have a pretty high pain tolerance) I took a mega-Percocet and it dulled the pain enough for me to not be crying out in pain. It's just been a dull pain the rest of today.

I assumed that this was either from UC joint inflammation or maybe from tapering Pred. I called my GI and he said it was neither. He said the Pred should be helping w/ any knee pain caused by inflammation. I love my doctor to death and this is the first time I've ever questioned him. I scheduled an appt w/ an Ortho Specialist tomorrow (my GI told me to) and we'll see what he says.

I've done some HW searches and it seems several people w/ UC and/or on Pred have had these horrific knee "flares." What do you think? I'm really curious to see what the Ortho says.
Renee
Diagnosed w/ UC in August 2007
Was in remission for almost one year (using only Lialda 4xday)
Rowasa and Canasa did not work.
Current status: In Flare since May 2009

4 Lialda/day maintenance, healthy diet
Starting Colal-Pred trial May 18, 2009, ended when hospitalized two weeks later. Also diagnosed with C. Diff while in hospital.
Currently taking Vancomycin, 60mg Prednisone (start tapering soon) and doc wants to discuss MP6.


P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 7/1/2009 5:51 PM (GMT -6)   
I think you are on to something. Im on Entocort and have terrible knee pain and back/shoulder pain. During flares in the past, I had leg and knee pain. I also have it every month before my period so it must be inflammation related.

Dee-39yrs old wife and mom of 3 boys
UC since 2004/PTSD/Panic Attacks/Depression/myofacial pain syndrome 2009-750mg colozal/1,000mg canasa/.5mg clonazepam, 4mg Lexapro-/Fioricet/Prilosec OTC-2x daily, Entorcort 9mg, Triple Strength Fish Oils/Colonoscopies-4
 


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 7/1/2009 6:00 PM (GMT -6)   
Thanks for the quick reply Dee. We really need to chat - have way too much in common. I also have three boys (ages 9, 7 and 3 - how old are yours?), we're close to the same age, and take several of the same meds (i used to suffer from severe panic attacks) -- and didn't you have C.Diff recently also? I seem to remember seeing you in recent posts, but I could be wrong. (I had it a month ago). Anyway, I wish we didn't have so much in common (LOL) but I know how hard it is to have this disease and be a mom to 3 wild boys and try to be a good wife too. If you ever need to chat, I'm here!
Renee
Diagnosed w/ UC in August 2007
Was in remission for almost one year (using only Lialda 4xday)
Rowasa and Canasa did not work.
Current status: In Flare since May 2009

4 Lialda/day maintenance, healthy diet
Starting Colal-Pred trial May 18, 2009, ended when hospitalized two weeks later. Also diagnosed with C. Diff while in hospital.
Currently taking Vancomycin, 60mg Prednisone (start tapering soon) and doc wants to discuss MP6.


P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 7/1/2009 7:03 PM (GMT -6)   
 my boys are 19, 13 and 6yrs old. I did have c-diff a few yrs ago due to antibiotics...no fun! We do have a lot in common. Feel free to shootme an email. Looks like we both love fitness too. smilewinkgrin
fitmom00 said...
Thanks for the quick reply Dee. We really need to chat - have way too much in common. I also have three boys (ages 9, 7 and 3 - how old are yours?), we're close to the same age, and take several of the same meds (i used to suffer from severe panic attacks) -- and didn't you have C.Diff recently also? I seem to remember seeing you in recent posts, but I could be wrong. (I had it a month ago). Anyway, I wish we didn't have so much in common (LOL) but I know how hard it is to have this disease and be a mom to 3 wild boys and try to be a good wife too. If you ever need to chat, I'm here!


Dee-39yrs old wife and mom of 3 boys
UC since 2004/PTSD/Panic Attacks/Depression/myofacial pain syndrome 2009-750mg colozal/1,000mg canasa/.5mg clonazepam, 4mg Lexapro-/Fioricet/Prilosec OTC-2x daily, Entorcort 9mg, Triple Strength Fish Oils/Colonoscopies-4
 


PrednisoneJunkie
Regular Member


Date Joined May 2009
Total Posts : 33
   Posted 7/1/2009 9:00 PM (GMT -6)   
The short answer is yes. Pred can cause knee pain. But it should normally be gradually onset, not all at once. And it should take repeated pred use before it gets bad.
27 / Male
UC Diagnosis May 2003
Survived 9 flares
Have successfully tamed 1 flare without prednisone
Asacol 9/day
Supplements: probiotics lactobacillus acidophilus, bifidobacterium infantis, maltodextrin, L. rhamnosus, L. salivarius, and S. thermophilus
Diet: paleolithic (but I often cheat), non-smoker, non-drinker
Other problems: Childhood asthma


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 7/1/2009 9:24 PM (GMT -6)   
I had bad knee pain while tapering pred more than once - it was excruciating to walk at times....but it didnt hurt while not walking....only while walking... I had other joint pain as well when tapering...
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 7/1/2009 10:10 PM (GMT -6)   
Hi Fitmom,
I don't come here often, but when I do, I focus in on people having joint pain.  My daughter took pred for 4 months and now has osteonecrosis (ON) in 9 joints.  Had we not stumble upon a really terrific rheumatologist who suggested an MRI, we still would not know that she has this bone disease.  It can lay dormant in the body and be misdiagnosed for years until an MRI is done to find the real reason behind the pain.  Please request an MRI of any joint, especially the hips/knees/ankles as these are weight bearing joints.  Should you find ON, it's especially important that you find an ortho who is experienced in treating ON and one who will investigate all joints with an MRI since it is the most sensitive in finding ON in its early stage.  My daughter's doctor is Dr. Mont in Baltimore...I wouldn't trust anyone else with her bone care.
 
All the best to you!
 
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 7/2/2009 3:53 AM (GMT -6)   
Hi Fit Mom,

I had pain in the joints of my hands when I was tapering off of Prednisone. I my case, I tapered too quickly. It takes awhile for the adrenal glands to increase their own production of cortisol. So its easy to get inflammations when tapering off Prednisone.

The pain went away once my adrenal glands had upped their own production of cortisol.

I agree, though, that it is best to get an MRI of the joints just in case.
Joy - 47 yrs and counting; Colitis Dec 06 (also have IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

Lexapro (for stress), Probiotics and Vitamins, Anti-inflammatory foods, No pro-inflammatory foods when flaring, No HFCS, No foods high in fructose, No artificial sweeteners -- Fecal transplantation worked, Prednisone stopped working, Colazal stopped working, Asacol stopped working


PoohPooh Circus
Regular Member


Date Joined Aug 2005
Total Posts : 102
   Posted 7/2/2009 6:52 AM (GMT -6)   
Here is what happens from my experience, Pred taper does not cause the joint pain however it unmasks the joint damage and pain.
When you use pred long term is causes soft tissue damage but the pred also treats the damage so you don't know it's there until you reduce the pred. then if the damage is minimal it heals over time if not you have to treat it with some non steriod method to help it heal or minimize the problems.
 
 
Since 1997 
 
 
 


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 7/2/2009 8:48 AM (GMT -6)   
Thanks so much for all the replies! I'm really perplexed as to why my doc would say that it has nothing to do w/ my UC. I started feeling the aching in my knees before I went to bed last night, but I took some Vicodin (which my GI called in for me yesterday, thankfully) and did not have a repeat episode of the pain like the night before.

I have an appt w/ an Ortho specialist today, but do you think I should change that to a Rheumatologist? I'm thinking Ortho treats injuries, which I don't have.

Buckeye, thanks for the heads up re ON. I will definitely keep that in mind and mention it to the doc.
Renee
Diagnosed w/ UC in August 2007
Was in remission for almost one year (using only Lialda 4xday)
Rowasa and Canasa did not work.
Current status: In Flare since May 2009

4 Lialda/day maintenance, healthy diet
Starting Colal-Pred trial May 18, 2009, ended when hospitalized two weeks later. Also diagnosed with C. Diff while in hospital.
Currently taking Vancomycin, 60mg Prednisone (start tapering soon) and doc wants to discuss MP6.


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 7/2/2009 4:23 PM (GMT -6)   
I've had horrible shooting pain in my knees when tapering Pred. It's been a few years now so I can't remember what dose I was on. I'm thinking it was around 20 mgs. My pain always came after drinking alcohol. I would wake up in the middle of the night in the worst pain. It didn't hurt to walk (the pressure of walking didn't make a difference), it was just deep in the knees and a shooting pain. I had Tylenol 3's leftover from childbirth so I took those. My GI also thought I was nuts. I haven't taken Pred in 3 years and have never had that pain again.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


fitmom00
Regular Member


Date Joined Mar 2008
Total Posts : 113
   Posted 7/2/2009 6:14 PM (GMT -6)   
Tks Glamourgirl - I didn't even make the alcohol connection. I haven't really had anything to drink for a few months while I was flaring and so sick, and I did have some Firefly that night (my favorite, Southern Sweet Tea Vodka! But I wasn't intoxicated or anything). Hmmmm - something to think about! What you described is just what happened. There was no position, walking, lying, heat, ice or anything that changed the pain at all.

Met w/ the Ortho today. I wasn't too impressed w/ the guy. he did xrays and they were fine. he basically said he had no idea what caused it and it was "odd" that it happened in both knees simultaneously. all he said was "if it happens again, come back and we'll do an mri" - oh, and he gave me vicodin. better than nothing, i guess!
Renee
Diagnosed w/ UC in August 2007
Was in remission for almost one year (using only Lialda 4xday)
Rowasa and Canasa did not work.
Current status: In Flare since May 2009

4 Lialda/day maintenance, healthy diet
Starting Colal-Pred trial May 18, 2009, ended when hospitalized two weeks later. Also diagnosed with C. Diff while in hospital.
Currently taking Vancomycin, 60mg Prednisone (start tapering soon) and doc wants to discuss MP6.


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 7/2/2009 6:47 PM (GMT -6)   
After 8 months on pred my left knee hurts a bit on and off. Went away maybe a month after I stopped taking pred but came back almost right away when I started taking it again 4-5 days ago.

GLOVE
Regular Member


Date Joined Jul 2009
Total Posts : 321
   Posted 7/2/2009 7:00 PM (GMT -6)   
I too had knee pain first in my left knee and then in both knees and I could hardly walk. I think it was the pred...my Dr. shrugged his shoulders and said he had no idea what could of caused it. It is better now that I am tapering off  the pred. This was the third time I have been on pred and the first time I had knee pain.

glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 7/3/2009 7:19 AM (GMT -6)   
Sweet, at least you got the Vicodin so if it happens again, you'll have it. lol. I wouldn't waste your time or money on an MRI unless it continues once you're off of the Pred. What you described is exactly what I felt and I have never had it again since being off of Pred.

Isn't it nice to know that someone has had the same side effect? Most doctors I've seen have always disregarded my side effects. It's so annoying!
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
Lialda, 6MP
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


Butterfly Kisses
Regular Member


Date Joined Aug 2008
Total Posts : 32
   Posted 7/3/2009 9:18 AM (GMT -6)   
I didn't have knee pain but my back hurt really really really badly. It would come on at night time and wake me up. My doctor said it wasn't due to the pred but I think it was because I have never had that happen before and it happened while I was tapering off of pred. That's crazy to hear about all this bone loss. My doctor refuses to put me on prednisone, he only did it because I absolutely needed it, other wise if we can avoid it he does. He is highly aware of the long term side effects of prednisone. :(
~Was diagnosed with Ulcerative Colitis in 2002.
 
Currently taking Colazal, Imuran and I am on Remicade.

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