Crohns Arthritis - just started up and some queries

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magnetic
Regular Member


Date Joined Apr 2006
Total Posts : 84
   Posted 1/16/2008 4:31 PM (GMT -7)   
Hi,
Well, I've just been diagnosed with Crohns Arthritis
it started on the back of my hands (being very sore) (Sunday)
next my hands and one leg begame painful, driving was not a good experience (Monday)
This then was a bit better on Tuesday morning, again I went to work and the drive home was not nice as the pains were affecting both legs and my wrists.
So I took today off (Wednesday) and went to the doctor, she diagnosed me with Crohns Arthritis.
As I have the Remicade infusion Monday she gave me some steroids to take only if things get worse.
At the moment my feet, knees, pelvis, wrists, hands and one shoulder are absolutely killing me.
My jaw, is also gettting sore too, it seems to be the joints that are used most often are affected.
I'm having trouble walking and holding things, I couldn't even use the pepper mill on my dinner as it was too painful to turn it.
opening doors and turning off and on lights is also a pain, and stairs are a nightmare...
 
I'm told again that anti-inflamatory's can NOT be used as this will obviously start the Crohns off.
So all I have is Paracetamol, up to 8 a day.
 
I was wondering what people take for this Crohns Arthritis?
I'm also wondering how long this could be expected to last or if it will ever go away?
 
My last query, is there anything I should mention to the speciallist when I see him next Monday?
 
Thanks in advance,
M
 
Diagnosed June 2005 with Crohns (left colon, large bowel)
Diagnosed Osteopenia Feb 2006
Jan07 Arthritis noticed in hands, not too bad yet
Crohns Arthritis Diagnosed January 2008
Remacide started March 2007
Asthma since childhood
 
changed my style to silver
changed my clothes to black


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/16/2008 5:07 PM (GMT -7)   
Oh, Magnetic, that sounds horrible. I'm sorry. It might be a good idea to keep track of your symptoms and keep badgering the doctors if you don't see any improvement soon. So many of us have our arthritic problems dismissed as "part of the Crohn's" when they're actually something else.

As for the difficulties you're having with your daily life, perhaps it might be a good idea to ask if you can be referred to see an occuupational therapist. Often they can advise on aids that will help you live as you want to.

I'm sorry you're in such strife.

I.
Co-Moderator Crohn's Forum.


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/16/2008 5:28 PM (GMT -7)   

Dear Magnetic,
You wrote "she gave me some steroids to take only if things get worse." It sounds like things have gotten worse. Perhaps you should take the med and rest the joints.  Can you just lay low for a few days and not stress yourself anymore than necessary?

This type of arthritis usually follows a flare up of your Crohn's. It subsides when your Crohn's settles down. Fortunately, this type of arthritis does not generally cause any permanent damage.
Take care and know we are here. (((((((((((HUGS))))))))))))


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/16/2008 6:29 PM (GMT -7)   
Yes it sounds like things got worse take the meds and call your doctor to let them know you are taking them. Then the journal is a great idea too docs like data.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 1/16/2008 6:54 PM (GMT -7)   
I feel your pain. LITERALLY. Mine was so bad a month or so ago, I couldn't turn a doorknob if there was any resistance on it AT ALL. BTW, driving makes most types of arthritis pain worse. IME sadly.
Ask about Celebrex, Crohnies can use this one, though I'm somewhat underwhelmed by my response, yours might be better.

Sincerely,
Matthew

tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 1/16/2008 7:14 PM (GMT -7)   
I am taking Humira for inflam crohn's arthritis and was on remicade prior. I have seen posts here from folks who have had this type of reaction to remicade. They will be here shortly with their wisdom I'm sure. Lots of luck to you.
DIANNE
Humira, pred and entocort 1/08
3 small bowel resections, 1 for perforation, 2 for strictures 
 


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 1/17/2008 7:32 AM (GMT -7)   
I have never been officially told I have Crohn's Artritis but I know I have arthritis in the small of my back. My knees and ankles hurt also. My doctor originally put me on Cymbalta and it worked terrifically but my knees and back have been really hurting me the last month or so. She just gave me hydrocodone to deal with the pain but I really want to treat the arthritis instead of just the pain. I also have lidoderm patches that helps some what.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/17/2008 7:42 AM (GMT -7)   
I have heard some have had some success with Tylenol Arthritis. Its a little different than regular Tylenol. You might want to give that a try.
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.


magnetic
Regular Member


Date Joined Apr 2006
Total Posts : 84
   Posted 1/17/2008 3:14 PM (GMT -7)   

All,

Thanks for the replies.

Woke up this morning with the pains still there, so I've taken the steroids, Deltacortil Enteric 5mg x 6 (30 mg). Took them this morning (about 10 hours ago) and have noticed a dramatic improvement, not 100% better yet but 50% or more and the pains have decreased dramatically.

I specifically didn't take the steroids yesterday night (I was very tempted) as they keep me awake, and I can only limit this by taking them in the morning.

I'll post on how I get on with the specialist on Monday, and will keep track of this post for your futher suggestions and advise.

I'll bring a list of the pains I have had with this Arthritis, your advise on possible meds and the suggestion to see an occuupational therapist (doubt I would have thought of this myself and was not suggested by my Doctor). Hope this will encourage the specialist to ensure I can limit or control this for this and future occurances.

Thanks a million,

manetic



Diagnosed June 2005 with Crohns (left colon, large bowel)
Diagnosed Osteopenia Feb 2006
Jan07 Arthritis noticed in hands, not too bad yet
Crohns Arthritis Diagnosed January 2008
Remacide started March 2007
Asthma since childhood
 
changed my style to silver
changed my clothes to black


SallyC
Regular Member


Date Joined Nov 2004
Total Posts : 158
   Posted 1/17/2008 3:21 PM (GMT -7)   
Oh my Gosh Manetic, I know exactly how you are feeling! With all of my flares I have had the same pain progression in the exact same spots as you! My knuckles grew twice their size. I could not drive, lift my twins out of the co sleeper or even lift my arms to put my hair in a pony tail. Mine seemed to go from one shoulder to the next. And my wrists were the worst. Mine lasted for about 2 weeks before it got better. I was already at 40mg of steroids so my doctor told me to try to be patient and let them do the trick and he said try to give it one week and it did get better then. He said the other thing he could do was add 20mg of steroids in the afternoon but that that would just increase the side effects of them. I said I would just wait it out. I took tylenol and just really tried to rest as much as possible.

Do you find that mid morning through afternoon you feel a little better? I also know that taking long showers really helps. I get this with every flare! Yuck!

Good Luck,
Sally
Sally
 
Diagnosed with UC in July of 2003 then diagnosed with Crohns in August of 2006.


magnetic
Regular Member


Date Joined Apr 2006
Total Posts : 84
   Posted 1/24/2008 2:23 PM (GMT -7)   
Hi Again,
  Well, made it to the hospital Monday.
Still with pains in Joints (wrists, elbows, Shoulders, legs etc...)
I mentioned these to the specialist and he arranged for x-rays of the joints and an appointment with a rheumatologist, who I'll see next week
The specalist did mention that the Remicade should help with the Arthritis,
and after 10 Hours in hospital I was able to go home.
Tuesday
The Pains are mostly Tuesday and besides the crohns being a bit worse Things are looking better.
I always notice the CD is worse for the week after the infusion, but then it goes back to normal
Wednesday
Unfortunately I now have Gastritis, Have severe pains above the stomach and was told the steroids may have brought it on, will deal with this, with the new meds, and hope it doesn't last too long, hoping to get back to work Monday.
Rgds,
  M
 

 
Diagnosed June 2005 with Crohns (left colon, large bowel)
Diagnosed Osteopenia Feb 2006
Jan07 Arthritis noticed in hands, not too bad yet
Crohns Arthritis Diagnosed January 2008
Remacide started March 2007
Asthma since childhood
 
changed my style to silver
changed my clothes to black


Opossumgirl
Regular Member


Date Joined Oct 2006
Total Posts : 121
   Posted 1/27/2008 8:44 AM (GMT -7)   
I switched from Humira to Remicade to help with both Crohn's and AS. Before the loading doses of Remicade were complete, I went into an arthritis flare that seemed different than all the other arthritis flares I have had. The rheumie then added in 7.5 mg of methotrexate, which he said actually makes Remicade and Humira work better, at least with regards to arthritis. It started helping after the first dose and with each weekly dose, the swelling/pain were reeled in a little bit longer. Maybe that would help you, too? I was to the point where I was very limited in the use of my hands, too, and it is not only draining, frustrating, painful, and irritating, but also scary. Best of luck! Opossomgirl
Opossumgirl
DX W/AS 1996

DX of CD 8/2006

Taking: Pentasa (1 Gram 4 x Day), Humira (1 Shot Every Other Week), Entocort EC (6 mg), Ultram and hydrocodone as needed for Pain, Advair for Asthma, Synthroid for Hypothyroidism, Metoclopramide as Needed for GP and Nausea, Forvia (2 X Day), Calcium (1200 mg) W/ D Each Day, Milk Thistle (1000 mg daily for liver support), Ambien as needed,


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 1/27/2008 10:39 AM (GMT -7)   
I've never been diagnosed with Crohn's Arthritis either (never heard of such a thing) but since Thursday I've been a hostage in my house due to swollen feet. I can barely walk. It's taken every bit of energy I have to get to my kitchen and nourish myself as well as get myself to the bathroom. I don't live with anyone and family is hours away so I have to do for myself. The rest of my body becomes somewhat inflamed, too. Sore shoulder blades, fingers, lower back, hip joints...

I've had this before, just a few months before I was diagnosed with Crohn's 4 years ago. It was much worse then but I was also much more sick back then. Since they didn't know I had Crohn's and couldn't explain the swollen feet, I was first put on Bextra which I had an averse reaction to and then I was put on Celebrex. Neither helped. It took 2 months for the swelling in my feet to go down.

My GP said he could give me steroids for the inflammation but I'm waiting it out for at least a week before I do that. I HATE medication and the thought of taking the steroids freaks me out just from all the stories I've heard on this board!
Diagnosed in October, 2003 at age 31.
36/F/SC
Currently taking Colazal, Nexium, One-A-Day multivitamin
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 1/27/2008 11:32 AM (GMT -7)   
Magnetic,
I'm sorry to hear that your joints are bothering you so badly. I can honestly say I know how you feel. I am also having terrible joint pains. And I'm also on Remicade. I personally feel the Remicade has caused my joint pain and am going to call my doctor tomorrow to tell her I refuse to get anymore infusions because I can't live like this. From what I've read symptoms of delayed allergic reactions usually occur between 3-12 days after an infusion. Joint pain, swollen hands, sore throat, and difficulty swallowing are some of the symptoms that can occur. As far as relieving the pain, for now I'm taking tylenol extra strength every 4 or so hours (it works better than tylenol arthritis for me), trying to move around enough that my joints don't stiffen up (because after that moving is unbareable!), icing the really sore and stiff joints, and taking epsom salt bathes (although getting in and out of the tub is a b*tch). Hopefully some of those things can bring you a little relief!
~Nikki


Olive J
Regular Member


Date Joined May 2007
Total Posts : 83
   Posted 1/27/2008 11:40 AM (GMT -7)   
I was DX 11 years ago with Crohns Arthritis. It was realy hard, but I had to do something.
 
I joined a private gym and started taking Omega3 oils. I never looked back and feel great.
 
But, that was me, look at your options available to you, meds and maybe so a bit of walking.
 
Hope you feel better soon (((hhhuuuugggsss))))
 
Olive

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 1/27/2008 7:59 PM (GMT -7)   
Kittikat.

Didn't you read the literature they usually give you with an IBD diagnosis?
Arthritis is mentioned in EVERY book & paper I've ever read on Crohn's. Not that I need to be told.. (sigh)

Matthew
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