As if crohn's wasn't enough

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westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 2/14/2009 8:09 AM (GMT -7)   
Well I finally got my dr to take me serious about all my joint pain. I was always told it was juts my crohn's. Or just not taken seriously. I have had the pain for years and it finally went away for a while this summer after I started Imuran. But now I have so much pain in so many joints. I can usually handle the knee and hip pain but my hands and wrists drive me to the end.
After asking me some questions she is finally sending me to a reumi. She is thinking either RA or Lupus. The Lupus thought comes from some weird rashes I have had along with the joint pain and my pain is symetrical instead of travelling like it tends to be with RA.

I know many of you suffer from RA. DO you have any suggestions for pain relief until I can hopefully get something from a reumi? I am using Tylenol arthritis right now with very limited relief.
My GP didn't want to give me anything without consultation. I am not sure how long the wait is going to be. I am going to call on Monday to see if they can give me a bit of a time frame so I know what I am dealing wioth as far as the wait goes.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 25 mg prednisone, probiotics, calcium, B12.
For asthma I take Advair 500, singulair, arieus


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 2/14/2009 8:44 AM (GMT -7)   

I don't have RA but I do have Crohn's/reactionary arthritis. I've had it in my hands which I found harder to deal with then when it was in my hips as you need hands for EVERYTHING couldn't carry cups of tea, couldn't wash my own hair, couldn't open mail etc etc.

I found wrist splints very helpful as it meant if my fingers weren't too bad I could pick things up as it makes you use arm strength rather than hand/wrist strength and took the pressure off. I found filling the sink with warm/hot water and placing my hands in it and slowly moving them around helped 'loosen' the joints up a bit and provided some pain relief - heat treatment was brilliant I found. I have these cura-heat wrist supports which you put a little heat pack in and they last for 8 hours and even though it won't take all the pain away it does ease it somewhat and makes movement a bit better. Unfortunately NSAIDs were what really took the pain away but its a horrible thing when you're like 'right which do I want hand pain or stomach pain' and I was terrified of causing long term bleeding internally. My doctor said a little NSAID gel on them should be OK as its external so I'd occasionally use a bit of that but again had the fear lol but I found that did help a little on the odd occasion where I'd had enough of the pain and just had to do something.

I'm afraid thats all I can think of to suggest, I hope you find some relief soon.


 
 


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 2/14/2009 10:48 AM (GMT -7)   
Thanks for the input. Unfortunatley heat makes my hands swell more which makes them ohhhh sooo stiff. Cold just makes them hurt. I have though of buying Voltaren Gel that is now available over the counter to see how that works on the knees and hands. NSAIDs are definitely out as my Crohn's is still mildly active and I had a lot of bleeding after my surgery in Oct. and really don't want to go back there!
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 25 mg prednisone, probiotics, calcium, B12.
For asthma I take Advair 500, singulair, arieus


colleen
New Member


Date Joined May 2003
Total Posts : 15
   Posted 2/23/2009 7:30 PM (GMT -7)   
look up realasping polycondrites
this is what I got because of my crohns, it causes all kinds of joint pain and more, it is very rare so most doctors do not look for it
good luck

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 2/23/2009 7:49 PM (GMT -7)   
Never put heat on swollen RA joints. I have RA. Normally I would recommend NSAIDS until you see your rhuemy but you may not be able to handle them.
English walnuts help, omega 3 supplements, rest-lots of rest.
And the best rhuemy you can find.
Prednisone would help but might also mess up the testing you need to have so blood work first then corticosteroids.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 2/23/2009 8:21 PM (GMT -7)   

Tanya,

I'm sorry to hear what you're going through. I don't know much about either RA or Lupus.  I always thought Lupus was in the vital organs. I've never heard of it having to do with joints. 

Any chance it could be a side effect of meds? I'm sorry I'm no help. Hope you get to the bottom of it. 

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 2/24/2009 5:02 AM (GMT -7)   
colleen, I will be sure to check out realasping polycondrites. Thanks for the direction.

sjkly, I definitely cannot take NSAIDS. My crohn's would go haywire. Pred does help. I have been on it for over a year. Everytime I start to come off it my joints get REALLY bad. Especially this last time. But my drs want me off the pred. And I very much want off the pred. I am still waiting to get into the reumy. I am hoping it doesn't take too long. I sadly would live with the pain rather than being on he pred any longer.

Tom, I didn't realize that Lupus could affect the joints either until my dr mentioned it and I looked more into it. My dr doesn't think it is a side effect of meds.

One good thing is that Imuran is used for RA sometimes as well as Lupus. I started Imuran 2 weeks ago now so I am hoping that within the next few weeks I start to get some relief.

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 10 mg prednisone, Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/24/2009 2:51 PM (GMT -7)   
joint pain is tough with this condition. it could be pred/withdrawal, it could be the chrons, it could be another autoimmune issue or something not related to it like a virus, lymes, etc. going to an rheumy is a good idea.

do you have any other symptoms like fever, etc?

for my joint pain while i am sick(and have been over the past 5 weeks without cause, waiting for blood work, similar situation to you), my primary has prescribed me ultram ER 200 mg once a day which knocks the pain down from where i can barely move to at least I can function now. it doesn't fix it as well as the left over percosets i have do, but the ER lasts longer and its not as strong a narcotic and leaves me with less of a hangover. any OTC never touched my pain. I would just sit in the bathtub for hours.

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 30 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


westat
Regular Member


Date Joined Jun 2008
Total Posts : 167
   Posted 2/24/2009 3:14 PM (GMT -7)   
Well I just got a call from my dr. They are going to retest CBC, ANA, ESR.... I don't have the exact numbers but my hemoglobin was 99, ANA positive, and ESR high. My ESR has never been high with my Crohn's even when I was really sick. I don't know the rest. They don't tell you much over the phone.
Still waiting to hear from rheumy for an appointment.

I take lots of salt baths that seem to help some. I only use Tylenol arhritis for pain, not that it really helps... and I just started using the new Voltaren gel. It works on my hips and knees but not so much on my hands and wrists. I cannot function while taking narcotics and I am working full time so need to be alert.

So now I wait for the results of the next set of blood tests.......

Tanya
Dx with Crohn's in 1997 after 5 years of worsening symptoms.
Resection a few months after dx after 1 month on TPN and IV steroids.
Resection October 2008.
Also have severe asthma.

Tried: Pentasa, Cholestyramine

Presently taking: now on 10 mg prednisone, Imuran, probiotics, calcium, B12.
For asthma I take Advair 500, singulair

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