Remission/sore joints/what's next?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/13/2008 8:36 PM (GMT -6)   
Forgive me for venting and asking a lot of questions tonight.  I "think" I've been in remission for the past two weeks (no bleeding; 2-4 semi formed bm's; more energy; no urgency) BUT I have a "bum" knee which is stiff and hard to move as well as a sore hip.  THankfully, maybe, the knee hurts opposite side of the hip.
 
I feel like any minute, a flare is coming on...I don't know how to prevent it.  I'm eating normal and nothing is bothering me (except I won't even test out milk products other than yogurt).  
 
I'm trying to exercise, but limp around like I'm twice my age and although I should be thankful I'm not flaring, I'm mad because now I have the knee/hip problems.  I"ve read several posts about the joint pain being part of UC and also Chrones. 
 
Did going off the pred a month ago cause this pain? Or, since my colon 'might' not be inflamed, is another part of my body getting it (the knee/hip)? 
 
I just feel so clueless and mad that nothing makes sense with UC.  I also worry that if I tell my GI about the joint pain, he'll tell me to see my GP and my GP will tell me to lose weight, but why did it all start now??  I've been overweight for awhile.  My hip hurt even when I wasn't overweight years ago.
 
Someone please help me figure this out.  Maybe you've had a similar experience(s) and can lead me down the right path. 
 
Ok, I'll stop rambling on............Thanks for responding ahead of time!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 1/13/2008 8:43 PM (GMT -6)   
for about 4 months i had UC related arthritis in my knees and ankles.
i walked (kinda) around like I was 80 years old. very painful. couldnt kneel down AT ALL.
couldnt wear my wedding shoes cuz my ankles and feet were so swollen.

but, it did go away all on its own after about 4 months.
dont know why, but it did. (unfortunately right when i got home from my wedding and honeymoon)

just dont take any NSAID's for the inflammation. those are really bad for UC.
steph - 31 - female - diagnosed UC in 2000
started as proctitis, went to pancolitis..then went back to left side only to splenic flexure.
last 3 weeks have been fabulous with no UC symptoms at all = remission (yey!) 
prednisone = finally finished!!!  woohoo!
1000mg mesalazine 2x day - 1/2 1/4 oxycodone every 6 12 18 hours (weaning)
calicim, inner health plus (probiotic), fentalyn patch for pain and to wean off oxycodone
VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
prednisone finally made me puff out on my last week of taking it ... bugger!
 
 


serendipity24
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/13/2008 8:45 PM (GMT -6)   
Prednisone made me feel like a 100 year old woman hobbling around the house. Literally, every morning I'd hobble around my apartment for probably 30min or so before the pain and stiffness went down. That was a couple of year ago. Now, pred free, I still have knee and back pain that didn't exist before I went on it. Pred is known to deplete Calcium from the body, and I'd definitely recommend a supplement (with vit D). Also, the joint pain I had was worse during the pred taper and shortly afterwards. There are a lot of people in the same boat (or worse) on this forum. I'd take a look at some of their posts too for other recommendations. (Bone density scans come up a lot. I think I'm going to try that soon.)

You're definitely not alone in this!
Rachel

23 yrs old
Diagnosed with UC: March 2004 with probable IBS component

Currently taking:
Asacol 4pills 3x/day
Prograf 5mg/day
(Prograf is my miracle drug! It doesn't seem to be well known, but it's fantastic!)

Previously Tried:
Prednisone (works, but such awful side effects!), 6-MP (gave me acute pancreatitis), Entocort, Cipro (antibiotic), Bentyl, Canasa suppositories, a couple different enemas


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/13/2008 9:14 PM (GMT -6)   
Quite a few people have reported joint pains when tapering from Prednisone. As I recall, they said it does go away after a while.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5186
   Posted 1/13/2008 9:19 PM (GMT -6)   
Yeah, I've been there with knee & hip pain! After dexa-scan failed to turn up bone damage, my gastro recommended testing blood for vit D25 level-- because that affects absorption of calcium into the bones. Upping vit D level did seem to help me overcome joint pain, plus I take glucosamine 500/chondroitin 400 daily with doctor's permission, as it is becoming known for relieving knee problems, especially. Hope this info will be useful for you! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remissiom)

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/13/2008 9:46 PM (GMT -6)   
I went through this, I thought it was caused by the Remicade, but my docs say it is classic UC arthritis. I had not taken Prednisone in 7 years. The pain came on suddenly, I've never had a joint pain in my life till one day last November. I haven't had it in my hips, but yeah the left knee and right ankle, or right wrist and left knee, etc. (and the HANDS!! OUCH, the hands and wrists were so painful) The Arthritis specialist called it Asymmetrical Psoriatiac Arthritis. I ended up on Prednisone to HELP the pains, it is the only thing that worked. This was the first time pain meds didn't help the pain at all, man it was scary and horrible. I tapered off the Pred, now have slight knee ache, but am much better... I now take Glucosamine, seems to be fine for my gut, also I started taking a vitamin B liquid supplement just cause I heard low vitamin B12 can cause those pains. I made my GI give me a blood test for B12 and of course it was fine, making me look like a nut. I still take the vitamin B supplement, I think it may help me have more energy and lessen the pain. Sorry you're feeling bad! I know how painful it is! If it gets unbearable, your GI might make you get back on the Prednisone. :( but it really did help me.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/14/2008 7:42 AM (GMT -6)   
Last year when I was in remission, everything was going great but my knees were absolutely killing me. I went to the doctor a couple times, had an xray, labs etc and they could never figure out why my knees hurt so bad. They never swelled or anything like that, but it hurt to bend them, go up stairs and heaven forbid I try to get up from kneeling down! So they chalked it up to my Uc - why does it seem that anytime something goes wrong, they always blame the Uc before going in depth with the problem?? It didn't seem fair that I was in remission feeling great otherwise only to hobble around like an old lady. Eventually though, as I got more into my remission, the knee pains started subsiding. I guess when you go into remission, inflammation is lessening all around and maybe it will just take time. As for your hips - please look into that more. Where in your hips does it hurt? In the front or back?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/14/2008 8:34 PM (GMT -6)   
Thanks everyone for your kind and encouraging words and suggestions. I can't say enough how much I appreciate you all and this forum. I've learned more about UC and coping with UC from here and I can't imagine where I'd be without this information and support!

I will look into the glucosamine 500/chondroitin with my GI--when I get the nerve up to! I did have a B12 test in November and it came back fine. However, I did stop taking the Viactive calcium chews when I went off the prednisone and know I'm not getting 100% calcium per day, now. So maybe my calcium and vitamin D is a little low??

Today the pain was a little better. I did walk more yesterday. It's interesting that I like to walk now, b/c it helps the pain! Go figure. Maybe it is God's humor of getting me to exercise! Kazygirl, I'm hoping mine goes away, too, with time. How terrible you couldn't wear your wedding shoes! Princesscolon, you got me to laughing good about your docs office thinking you were a nut for the B12 test!

Sherry, I think your reasoning sounds good--going into remission makes the inflammation lessen all around.

Also, my right hip has ached (inside-it feels like) but also on outside of my body, if that makes sense. Is that the front or back of my body or hip? I've had that pain for about 12-15 years off an on, here and there (and like I said even before I gained weight). Please respond! What are you thinking??
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/15/2008 7:02 AM (GMT -6)   
I'm not an overweight person but I've had back and hip pains all my life even before getting Uc. No doctor would ever take me seriously and they never found anything. But these last 6 months, walking, bending, sitting all became more unbearable so I went into my primary (I've been with her for 1 years) and I am so glad I did. She is an awesome doctor! Anyway, I found out that my sacroid joints where inflammed. These are the joints that hold your spine in line with your hips and it also allows you to move your hips when you walk. Anyway, I went in for steroid injections for my SI joint and almost all that pain I was experiencing has disappeared. After all these years, I found the culprit to my pain. Now I'm not saying this may be the case for you but it's something to look into.

Also, when was the last time you had a bone density test? If you haven't had one, I highly recommend you ask for one because you've been on steroids.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/15/2008 9:14 PM (GMT -6)   
Thanks, Sherry. That's a lot to think about! I will ask my GP to do a bone density test --probably should have before now, as mom has some difficulties in this area. I can't believe you've endured such pain! Mine seems very minimal, now and actually is getting better. Thanks so much for responding!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


trumpington
New Member


Date Joined Jan 2008
Total Posts : 9
   Posted 1/16/2008 5:48 PM (GMT -6)   
I had a terrible time with knee pain when tapering prednisone. I would wake up at 1:00 or 2:00 in the morning feeling like someone was pounding spikes through my knees (and this was just after the prednisone doses were low enough that I was starting to sleep through the night again, and hence was doubly discouraging). The pain would then last until my next dose of prednisone after which it would relent somewhat. I assume that this was inflammation due to prednisone withdrawal affecting my already-sketchy knees. The best solution I found was fortunately a simple one: ice. One ice pack per knee for half an hour as soon as the pain started and after that I was back to sleep for the rest of the night. That being said, this really was just a remedy for the knee pain, which could have been a symptom of something else. It would be wise to take it seriously and ensure that there isn't something more significant at fault, as suggested above.

Craig

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/16/2008 9:14 PM (GMT -6)   
Good advice, Craig. I need to make a doc apt. and get on this b/f it leads to worse.

I noticed you are a new member so WELCOME! Hope to hear more from you.
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/21/2008 7:17 PM (GMT -6)   
Here's my updated and I'd like any and all feedback: diagnosed with arthritis and supposed to take an NSAID,but isn't that a 'no-no' for us UC'ers???

Also, beginning to flare and told next step is Imuran. Couldn't I do pred again? It's only been two months since I was on it before and I was on it for 3 months then. How many times do most people try prednisone before going to the higher meds?

Thanks for your repsonses and support. I really need to hear from y'all!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/21/2008 8:17 PM (GMT -6)   
I have a lot of problems that my doctors get frustrated because they all wished I could take Nsaids but they won't prescribe me any because of my Uc (nor will I take them either). I sometimes wish I COULD take them just to ease some of the pains I get. I have however tried Naproxen on occasion but I can never take more then 1 a day or I flare horribly. It's sort of tricky to be dealing with arthritis and Uc. I heard that Sulfasalazine is sometimes used in arthritis - can you take that? Do you know what kind of arthritis you have?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/21/2008 8:41 PM (GMT -6)   
Hi Sherry,

I was told "mild" arthritis, although family history of osteoarthritis. Guess I should call tomorrow and find out, don't you? Would a specialist be called for at this stage? Sorry to hear your birthday was difficult. I hope you are feeling better!

AB
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/22/2008 7:43 AM (GMT -6)   
Thanks, yeah actually I am feeling better this morning. No more D anyway :) The reason I was asking about which kind of arthritis you have is that I know with rhuematoid arthritis they use Humira or Remicade(?) to help control the inflammation in the joints and that can have an added benefit for Uc'ers too. But, as for a specialist, I think that depends on how bad it is, what the symptoms are etc and is up to you. I just recently found out that I have minimal arthritis in my spine which doesn't require any intervention just yet, so we are just keeping an eye on how I'm doing.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/22/2008 4:49 PM (GMT -6)   
Hey Sherry,

Another update: went to GI doc today b/c of rectal bleeding since Sunday. I thought he was going in the Imuran direction, but we're going for Canasa suppositories, first and then an office exam, if that doesn't help. Also, he said only take Tylenol for the arthritis-which could be UC linked-and stay away from those NSAIDS! I really like him more and more! THe knee is not as bothersome today--I did a lot of stair stepping over the weekend--must have really aggravated it and, I'm thinking if my UC is flaring, the arthritis might be worse? Do you find that happens to you? Thanks again!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/22/2008 6:01 PM (GMT -6)   
Oh my goodness yes! When I am flaring every single joint hurts! Though I don't have arthritis in every joint :) Must be a Uc thing - but my back and hips hurt something fierce when I'm flaring. Actually they recommend you excersize when you have arthritis. It helps keep things "moving" properly. I know it's tough. I am supposed to be doing some excersizes too but the latest flare makes me barely want to move off the couch.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
To help Healingwell - click here: DONATE
http://www.myspace.com/82595818
"The quality of my life depends on the quality of my thoughts."
 
 
 
 

 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 1/22/2008 6:35 PM (GMT -6)   
Ha! LOL You got that right! Exercising seems like downright torture when your body is already racked with pain! I read on the arthritis board that a daughter's father who is overweight faithfully rides his bike for 1/2 an hour daily b/c it really helps with the pain. He is my hero!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone on 9/16/07 and DONE as of 11/26/07!Canasa suppositories 1000mg 2X/day as of 1/22/08
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 14, 2018 5:24 AM (GMT -6)
There are a total of 2,992,450 posts in 327,956 threads.
View Active Threads


Who's Online
This forum has 161192 registered members. Please welcome our newest member, rae26130.
229 Guest(s), 3 Registered Member(s) are currently online.  Details
Tudpock18, beagleman, Subdenis