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Ulcerative Colitis
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Posted 5/14/2010 7:53 PM (GMT 0)
My 18 year old friend Heather has a bad case of ulcerative colitis and is facing surgery, most willingly. (Nothing has worked) She's been on prednisone I think for some two years and is now getting this for the first time (read below). I think she's on 25 mg now. Please advise and I'll take your advice to her. She is not a message board type of person, but wants your advice. -- Ellen


On 5/14/2010 10:44 AM, Heather Young wrote:
> Hi Ellen,
> I'm not sure which one of these emails you get email at, so I'm just trying both. I am at school right now researching a question that is really bothering me. I am not sure if this is due to the prednisone that i am taking, but this symptom shows up out of no where without any warning and is almost debilitating.
> This morning I woke up at about 3 in excruciating pain. My knees had severe joint pain, which was almost indescribable. It has happened several times before, but this time the pain lasted for the longest it's ever been. I can't move my legs, and I end up on the floor in tears most of the time because i can't move my legs, and sharp pains pierce deep down in the inside of my knees. This is how i know how to describe it. I'm not sure if you've ever experience anything like this. i was hoping maybe you could post a question on healingwell or something, or maybe help me do some research. I don't know what to do. I try and take tylenol to ease the pain, but it never alleviates it. I try putting heat on my knees, but it doesn't really help. I usually end up just walking around all night, trying to walk off the pain. nothing seems to help. Please let me know if you can help. My doctor doesn't think that the prednisone has anything to do with the joint pain, but i disagree. Please help. I am in so much pain and I don't know how to take care of it.
>
> Thank you,
> Heather
Posted 5/14/2010 8:27 PM (GMT 0)
I feel for your friend. Last summer I would wake up in the night with excruciating pain in multiple joints and both sides. It was all I could do to straighten and then bend my knees. I also had it in my shoulders (like 10 pound weights), ankles, wrists, fingers. I never got any answer and even saw a rhumetologist, had lots of blood tests done, etc.. Vicodin from urgent care did nothing for the pain. Tylenol PM did not help and I got very little sleep because the pain kept me awake. It was at night only for about 2 or 3 weeks and then crept into being debilitating during the day. I would go to bed at 8:00 because it was too difficult to walk.

I am curious if anyone has answers. I had been on Prednisone for about 7 months with a one month break in between and also had 3 remicade infusions. I had been off the prednisone for about 5 weeks and the remicade for 9 weeks (never went back on it). Sorry I don't have any answers, just empathy. I don't even like to talk about it because the whole thing was bizarre and scary and I feel like people probably think I am exaggerating when I describe it. I guess the plus side is that most of it is gone now but I still have problems with shoulder pain and some knee issues but nothing like it was. I am so sorry Heather is going through this. I would guess it is the prednisone in her case as she has been on it for so long. Is she in the process of trying to ween herself off? Or, has she been on 25mg for a while?
Posted 5/14/2010 8:43 PM (GMT 0)
She was down to 5 mg, and I believe got off of it, the bleeding and diarrhea bounced right back and they bumped her to 40 mg. Meanwhile she had lost a lot of weight and was weak, they put her back on 40 mg. to get her strength back in advance of surgery.
Posted 5/14/2010 9:04 PM (GMT 0)
It could be UC arthritis, but sometimes I think that becomes a blanket diagnosis for unexplained joint pain for us UCers. For me the pain felt like an attack, like my body was somehow attacking itself or my immune system was attacking my joints. Does she have the pain only at night? I wonder if her pain started when she was off or when she went back on the prednisone? I think she should go see a rheumatologist. Hopefully she can find one who can offer some answers, or at least prescribe pain meds. for nighttime. I think it is the prednisone in her case but I am not an expert. I guess another question is does she have swelling?
Posted 5/14/2010 9:30 PM (GMT 0)
WOW!!!!I had the same exact pain in my knees...so excrutiating that I could not even walk...I feel it was when my flare was at it worst... my body was attacking itself. I was on 20mg of prednisone at the time and I had been on it for a while when the knee pain happened. I went to the ER and they ran a ton of tests along with an MRI on my knees. The MRI showed slight swelling but that was it...they did not find anythig else wrong with me...they gave me pain killers and sent me on my way. The only thing that really seemed to help was.... I wrapped both of my knees in ace knee supports. It lasted for about two weeks and then it went away. I still feel alot of aches in my knees but it comes and goes. I feel for your friend...it is horrible. I hope she feels better soon!!!
Posted 5/14/2010 11:35 PM (GMT 0)
Prednisone can cause joint pain. It also can cause osteonecrosis, which can be unbearably painful as the bone dissolves. If the pain persists, she should see the doctor and get an MRI to rule this out.
Posted 5/15/2010 1:18 AM (GMT 0)
iam sure that this is arthritics related to uc. 2months ago i had the worst arthritics flare. I couldnt walk,go bathroom and even sleep. Pain and pain and pain , i really feel how bad is that ,i felt that i'm 80years old not 22 .
I cant describe the pain
Posted 5/15/2010 2:16 AM (GMT 0)
Change is possible, That sounds exactly the way I felt. I was 49 last summer (50 now), older then you, but I would watch women in their 70's and 80's walking around and be jealous that they were more youthful looking then me when they walked. I was basically bedridden for most of the summer. For me it was a slow recovery. I also ran a low fever for about 3 months. How long did your pain last?
Posted 5/15/2010 3:25 AM (GMT 0)
Note from Heather...

Dear Beeswax,
I did some searching around today to see if I could figure out what causes this joint pain. the best I was able to come up with was osteoarthritis. I know that this pain has to do something with the prednisone. I am also on Remicade, but the joint pain came before I started the remicade last year. This has happened several times, and usually without warning. It only happens in the middle of the night. I wake up in tears because my knees have pain so bad deep beneath my skin I almost feel as if they were to explode. There are sudden sharp shooting pains that often leave me gasping for breath because no matter what I do, the pain does not go away. There is no swelling that I can see. No signs of redness, just tenderness to the touch. Thank you for your concern. I had never heard of UC arthritis before. Just knowing that I am not the only one who is experiencing this odd and painful symptom is comfort in itself. Thank you!

Heather
Posted 5/15/2010 3:37 AM (GMT 0)
I had issues with my joints when I was coming off of Prednisone. I'm okay now. I wish your friend luck with surgery.
Posted 5/15/2010 12:38 PM (GMT 0)
Journey2health, Thank you for sharing Heather's email. And thank her for sharing. Maybe at some point she will join this group. I think it is a good place to feel validated and that you are not alone with you illness and pain.

I think it is interesting that she also had the pain only at night and no swelling. This is how it was for me. I don't think it is osteoarthritis, only because I feel that is related more to wear and tear. I do have that in my one knee but it bothers me day and night. I too did a lot of searching online for answers last year and I think there is a correlation to prednisone and remicade. This is not the joint pain that comes typically from weaning off of prednisone. It is from another realm. For me it was the worst pain I have ever experienced. I have given birth without pain meds and the joint pain I suffered at night was far worse, then on top of it you don't know what is causing it and my doctor had no answers. It makes you feel very isolated as it is invisible. I hope Heather's pain will go away quickly so this can just become a bad memory. I wish I had more answers.

Also, tell Heather to make sure she is getting enough calcium and vitamin D, especially being on prednisone that long... Vitamin D deficiency also can cause joint pain.
Posted 5/15/2010 5:19 PM (GMT 0)
I'm finally joinging the discussion! I had to search around, but I figured out how to work this thing!

I woke up again with the same joint pain in my knees as yesterday morning, but not nearly as bad. It just comes on without warning, and lasts for sometimes several hours. I have been searching around for answers, but all I can conclude is that it has something to do with the prednisone. I had a bone density scan done about a year ago I think, and it didn't show anything wrong with my bones. I did this because pred can cause severe bone damage. I have been on Prednisone for almost a year and a half and it has really taken it's toll. I have yet to discover anything else wrong with me, but cataracts could be in the mix, I have developed scoliosis, pred acne, and dry skin; among other things. I really appreciate any input anyone may have regarding this pain that I am experiencing. It seems to me that there is nothing that can be done to ease the pain. But, if there are any miracle remedies, I would love to get some input! I am only 18, but feel like I live in an 80 year old body.

Posted 5/15/2010 9:56 PM (GMT 0)
Hi and welcome! I don't have any advice, but I wish you the best...you are definitely too young to be dealing with this kind of pain!
Posted 5/15/2010 10:28 PM (GMT 0)
Hi, everyone, especially Beeswax. Heather came on the board.
She's Youngh and she appreciates all of your comments I've been sending her via email.
Posted 5/15/2010 10:36 PM (GMT 0)
Welcome Heather! I am glad you joined in. I am not sure I have given you any advice that is helpful but at least you know you are not alone. Have you seen a Rheumatologist? You might ask your GI to refer you to one. Please keep us up to date on how you are doing.
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