RA and Ulcerative Colitis?

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Kings Kid
New Member


Date Joined Jul 2007
Total Posts : 12
   Posted 7/8/2007 3:20 PM (GMT -7)   
Hi,
I have had UC for 20 years. (another autoimmune disease-of the colon)Feb.-April 2007, I had TERRIBLE finger pain(all pains always symmetrical) elbows, toes. Swelling, redness. (Colitus not bad during this time, but had stress at work starting in Jan-June.) Pain got better in middle of day, worse again at night. Exhausted. Had seen Rheumy in April, tests negative(all RA type labs, parvo B-19, and Lyme tests), and by the time I got to him, most of pain was gone. We took the "wait and see" approach-maybe a virus he said.
May 2007, NO pain, then June 1+2 a fever with very mild cold symptoms-mostly just fever. June 3, I woke up, fever + cold symptoms GONE, but fingers extremely painful again, and swollen.  NOW, back to Rheumy, pain is awful, and fingers, wrists, elbows, slight shoulder, knee, ankle and toes-all symmetrical. Obviously the same thing as before, but in more areas now. Colitus not good either now.
He put me on Prednis. for 12 days-first 3 days 20mg. then tapering off days 4-12. As soon as we cut the dose on day 4, pain started back, getting worse each day. First day off pred. -horrible pain. Rheumy put me back on 20 mg. prednisone ta few days later until I feel "I have a handle on it " (?) and then call him. The pain is much better, but still feel some at times-especially with stress. Have been on 20 mg. for about 10 days. Swelling in fingers comes back w/ stress too-even on Prednisone.
        Ulcerative colitis has been bad since May (stressful event in May at home)
Rheumy says this is autoimmune joint pain, but too early to label RA. I have read 9-10 books on RA and am pretty sure I have it. Rheumy wanted me to see Gastro. for UC, who just changed my meds. (From Asacol to Colozal) We'll see what happens. DO ALOT OF PEOPLE WITH RA ALSO HAVE COLITIS? (Being that they are both autoimmune?) *My pain does not match Colitic Arthritis, (CA pain is NOT symmetrical, and tends to be in lower extremities.) Gastro. didn't have much info. as far as if the two are related-even auto immune wise. Said he would treat UC, and Rheumy can treat joint pain. (He's a waste of time) Of course can't take any NSAID due to Colitis (Getting a new Gastro. though, who will spend more time) What do you guys think? I am afraid to go off Prednisone, but don't want to blow up either.
*HOW LONG DO REAL PEOPLE WITH RA USUALLY STAY ON PREDNISONE, AND WHAT STRENGTH?
*HOW LONG SHOULD I BE PAIN FREE BEFORE I CALL RHEUMY TO SAY I HAVE A HANDLE ON IT, AND AM READY TO DROP DOSE?
*DOES THIS SOUND LIKE RA TO YOU?
Thank you,
Female -38 yrs.
 
 

Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 7/9/2007 5:35 PM (GMT -7)   
Helllo King's Kid. I've got Crohn's and Ankylosing Spondylitis. This form of inflammatory arthritis is often associated with Crohn's or UC and is something you should discuss with your Rheumy. Finding a Rheumy to Dx and treat this can be a bit tricky, especially if you test negative for the genetic marker HLA-B27, or don't yet have signs of fusion. Also, some Docs don't believe that AS can affect the fingers, but many others do. I have several friends who have significant hand involvement and are RF negative. Since OA doesn't do that type of damage, AS must be causing it.

Of course this may not be the answer, but it's worth looking into. You can find lots of info at SPONDYLITIS.ORG. The one good thing about this is that the meds used to treat the AS are the same ones I need to treat my Crohn's, so I'm treating both disease with one shot - literally.

I hope you find answers and relief soon.

PS I've been on 20mgs of Pred since early May and haven't had any real side effects other than some trouble sleeping. I'll probably be on this until at least sometime in Sept. Hopefully, this is a low enough dose that I won't blow up from it.


Keah a.k.a. Wormy
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Traci's Tummy Hurts
Regular Member


Date Joined Jun 2007
Total Posts : 46
   Posted 7/10/2007 1:48 PM (GMT -7)   

Kingskid,

I have IBD and the arthritis symptoms in my hands are what got me to the dr. to get dx.  At it's worst, I couldn't even move my fingers enough to squeeze shampoo out of the bottle or brush my hair (thank God for my roommate and boyfriend).  I was sure I had RA.  My rheumy had dx'ed my mom with RA the week before.  Mine wasn't symmetrical and he sent me to the GI.  Luckily for me, the Sulphasalazine that I'm on for my IBD is used for arthritis too.  My GI wants me to taper down the Sulphasalazine, but every time I do my joint pain is back (which is odd since I am on 4000 mg and 1000 mg is what is usually rx'ed for arthritis).  My rheumy has tried to put me on Prednisone a couple of times now when my pain seems to flare (no more heavy lifting for me), but I have refused at least for now.  I have been on Pred for my asthma/bronchitis/pneumonia and HATE the side effects.  Nail down everything cause I'm so hungry I will likely eat the wallpaper off the wall and I'm moody!!! 

Anyways, I don't really have an answer for you other than to say that CA is usually lower extremities, but there are exceptions.
 
I did meet two people on the Weigh***chers board that had RA, AS, and Crohn's. 
 
I feel your pain.  Hope you start feeling better!
Traci, 26 yr. old female
 
*Symptoms started 6/06
*Diagnosed with "non specific" IBD after a colonoscopy 3/07
*4000 mg of Sulfaslazine/day
*Levsin as needed for cramping
*Constant bc (skipping the placebo and starting the next pack) for ovarian cysts
*Chewable calcium & vitamin D, prenatal vitamin, and melatonin for insomnia
 


Kings Kid
New Member


Date Joined Jul 2007
Total Posts : 12
   Posted 7/11/2007 10:29 AM (GMT -7)   
Keah,
 
Hi, I wrote you a LONG response, and the site/my computer did something and lost it. I will try to quickly sum it up. THANK YOU for your response.
Your site was very good-especially on enteric involvement with joint issues.
I read other sites about AS too, but don't feel my symptoms match up. My Fingers are main point, with pain there always being first to show up, and worst, other joints not as severe (elbows and toes next in severity, with knees, ankles, and wrists following. NO back pain. symmetrical and short periods (6 wks. or so) matches up, but no spinal pain at all. Do your friends with AS have back pain (to get the initial diagnosis) and then also finger pain along with it? I'm trying to figure out if you can have AS without having any spinal symptoms. It appears not.
I will definitely not discount AS-need to keep it in mind. I plan to read much more on it. Had Osteomylitis of Lumbar 3+4 at age 15, and think I would be very sensitive to catch spine pain early on, if from AS or anything else. Have to sleep on soft mattress that cradles lumbar area muscles if I don't want to wake up with pain from that. Use temporpedic and no spine/sacro pain for a number of years now.
 
-Just seems like RA matches perfectly. Lab tests are not conclusive for diagnosing RA-just confirmation-Only 40% of people who have RA test pos. for RH factor during the first year. And 15-25%+ have RA but never test positive, and some members of gen. pop. are RH pos. with no RA.
I understand IBD makes lining of intest. more permeable, and bacteria gets into bloodstream, causing various joint illnesses, -sometimes RA, sometimes others.
This article (link below) is what originally made me think the UC and finger+joint pain were not related-the UC type joint pain doesn't match up. It's very specific on what type joint pain goes with which Gastro. things. (Also mentions AS) Actually none of the enteric joint pains match up. (can't explain why this thing is switching color-not done on purpose)
(I know this author is not the end-all authority on this stuff) If you come across any other info. relating IBD or UC and joint pain, I would definitely be interested.
I suspect joint pain is not directly related to Colitis, (still researching) but since they are both Autoimmune, one can get the other going. I have come up with this preliminary guess because of this summary -Wed. mild stress-then fingers started hurting (taking 20 mg. Pred. for joints) pain didn't hang around long-thurs. better. Fri. AM joints OK. Fri. New Gastro-got me very stressed,even effecting my sleep that night, then fingers started hurting within 10 min. of leaving Dr., other joints too-more mild than fingers, but definitely there.  The pain came out of the blue and seemed to be a response to the stress this Dr. gave me. (not enough time spent, not much info, careless errors, personality conflict-Have appt. with new Gastro. :) Sat. late afternoon started Colazol, (stopping Asacol), Sun. AM, added Colocort enema in addition to regular Rowasa en. each night. Colitis not bad on Sunday, Mon. Colitis GREAT. -(even with a small sample of Caffin. Starbucks coffee with whipped cream and no lactaid pills to go with it. -Usually that would have sent me running.) As Monday goes on, and Colitis is wonderful, fingers start hurting more and more, and by Mon. eve. very bad pain in toe joint, fingers and moderate pain in other joints listed above. Have not had pain like this since starting second round of Pred. BUT, Colitis is great.
If you have any thoughts on this-feel free to express. I know joint pain could also be effected by change in meds, BUT it started before changing meds, and immediately after being stressed.
My side effects of 20mg. of Prednisone (on it for 2 weeks now) are hands shaking sometimes, and trouble sleeping, have not gained weight, but belly fat seems to be shifting to back of arms. (redistribution of fat to upper body predicted with Pred.)
Glad to hear your AS +Crohns can be treated with same meds. Same with UC and RA, but haven't had UC bad enough to be put on those types of meds yet. Have always just taken Asacol + Rowasa at night.
THANK YOU for your response, and please send links to other info. you find on joint pain associated with IBD or UC.
:) 



Kings Kid
New Member


Date Joined Jul 2007
Total Posts : 12
   Posted 7/11/2007 10:40 AM (GMT -7)   

Hi Traci,

Thank you for the response. It's helpful to know that someone else has had severe hand pain with IBD. I can't take Sulphasalazine due to severe headaches, but I'm glad it has been so helpful to you. The Colazol I started Sat. seems to be working really well so far for UC, so I may need to just wait and see if the joint pain goes away, as the UC leaves, comes back, etc. to try to figure out if it's related. The symmetrical thing worries me, but it is bearable for now with the Prednisone-not a long term solution though. Maybe the Pred. will hold me over until the new Colazol gets UC under control, and I'll try going off of it.

Fingers are worst, but it's weird how some days both knees hurt, others  it's both toes, etc.

I wonder if RA pain moves around while being symmetrical??? Still, fingers are the main thing.

Thank you very much for sharing your hand pain experience!

:)

38 yr. female-not enough time to list all meds I take right now for various things.

 

 


Traci's Tummy Hurts
Regular Member


Date Joined Jun 2007
Total Posts : 46
   Posted 7/11/2007 10:50 AM (GMT -7)   
KingsKid:
 
Sorry you are having a hard time.  Sulphasalazine seems to be working for me.  The headache's were horrible at first as where the "gurgles" and nausea, but then my rheumy over-ruled my GI gave me enteric coated tablets and they got much better.  Why would anyone ever give non-coated in the first place?  It needs to break down in my colon.  Hello.  tongue   I'm not a big fan of my GI either, but everythings under control for now so I'm not planning on making a move but may consider that in the future.  I love my rheumy (first visit was 2+ hours and I left there thinking if anyone was going to get me a dx, it was him) so it makes up for it.
 
Thanks for the article.  Makes me wonder.  I will have to ask my rheumy about which arthritis I have.  They've done x-rays, etc., so I have no damage, which is good.  My lower back is already fused due to a birth defect, so he isn't too worried about AS.   
Traci, 26 yr. old female
 
*Symptoms started 6/06
*Diagnosed with "non specific" IBD after a colonoscopy 3/07
*4000 mg of Sulfaslazine/day
*Levsin as needed for cramping
*Constant bc (skipping the placebo and starting the next pack) for ovarian cysts
*Chewable calcium & vitamin D, prenatal vitamin, and melatonin for insomnia
 


Kings Kid
New Member


Date Joined Jul 2007
Total Posts : 12
   Posted 7/12/2007 5:38 AM (GMT -7)   
Hi Traci,
Wow, your Rheumy sounds wonderful! I do like mine. He only works 3 days per week, but uses an answering machine (much better than a service) and actually listens to it on his days off, and is willing to discuss details at legnth over the phone.  I am in Southeastern NY-I wonder if it's same one?
I didn't know your med. came in enteric coated-that's good to know.
I loved my OLD Gastro. -but he moved to Isreal recently-that's how I ended up with this other guy I don't care for. I'm going to see another Gastro. from my old guys group now-it's a bit of a ride to the office, but I learned the hard way that it will be worth it.
Take care for now,
and thanks so much!
:)
38 Yr. old female
 

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/12/2007 8:54 AM (GMT -7)   

My father has both UC and RA.  It's not that uncommon from what I understand.  In addition to the RA, the has the IBD-related arthritis as well (which I think includes heel pain?).  His UC pretty much remains in remission, although it rears its ugly head every once a while.  My father keeps a stash of prednisone available for just such an occasion.  He takes methotexate for his RA (as do I).  I would recommend that your rheumy and/or GI doctor put you on a dmard (sulfasalazine, mtx, biologics, etc...) while taking the prednisone.  Then you can eventually taper off the prednisone while the dmard starts kicking in (most of the dmards take quite a while to start working).  My rheumy only uses prednisone as a bridge drug, from one drug to the next, mostly because all of the dmards do take time to start working.  Don't get me wrong--prednisone is a wonderful drug, works great!  The long-term side effects are not pleasant, though.

 

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Kings Kid
New Member


Date Joined Jul 2007
Total Posts : 12
   Posted 7/13/2007 7:18 AM (GMT -7)   
Hi Elcamino,
Thank you-I agree with you entirely!
You are exactly right on the fact that Pred. is usually only used as a bridge med. while patients are waiting for the DMARD to work in RA.
 
He said he thought the Pred. would calm down the whole autoimmune thing going on in my body-whatever it was exactly. (I have since learned that Pred. is used in higher doses for UC though-that may explain why it hasn't helped that, but does help the joints.)  
I was hoping the Rheumy would start a DMARD rather than the second round of Prednisone-knowing that the Pred. doesn't stop or slow down the RA disease process, and even if it's not RA, the DMARDS wouldn't be dangerous since they are also used in UC patients.
I mentioned that I really felt from all my reading that it is probably RA, but since he still says it's too early to say that, I didn't suggest the DMARD because we were speaking on the phone-not in person. I voiced my opinion that I did not want to go on Pred. again, but if he thought it was best for my health I would.
I'm wondering if when I taper or go off the Pred, all joint pain will return, then will have to go back on Pred. and a DMARD, until the DMARD begins working. -Sounds like a waste of time huh? -especially when it's so important to stop the disease process early on with RA, to avoid serious damage later. We'll see. I do appreciate that he is careful, not wanting to label me with a Dx that I could take meds for, for years and not really have.
 
I have read so many books on RA recently, I probably know more about that than the UC I've had for 20 years. I accepted the fact that I have UC years ago, and researching diseases wasn't as interesting to me at 18 as it is now at 38. (wisdom comes with age) I am now taking a second look at UC stuff, digging deeper-not willing to accept illness as a way of life quite so easily-besides finding out new info. in the puzzle is intriguing to me. We all know that no one cares as much about our health as us, and we are far more capable of keeping track of our personal details than Dr.'s who see hundreds or thousands of patients. Anyone who does not take charge of their own health care is crazy!
 
Maybe I'll leave him a message and give him an update-that I am still having some joint pain-espec. fingers in AM, even on the Pred. Was hesitating on doing that until I had a little more time to observe the results of the new Colazol, just to see if there was any corrolation with changes in UC symptoms and joints. The Pred. sort of masks the joint pain to see that clearly, and I know you can't just stop it abruptly. Seeing the next Gastro. (hoping he'll be worth keeping) in end of July. 
 
Thank you so much for the info. on your Dad. Did they make the determination that some of the joint pain was actually RA and not due to UC because of a positive RH factor or elevated sed rate? Wondering what it was that enabled them to differentiate the cause of the joint pain-maybe location -UC tends to be lower extremity joints. Sed rates never come back elevated for me since I've been on Asacol for 15 yrs. -controls inflammation.
Thanks!
:)

38 Yr. old female
75 mcg. Synthroid, 220 mcg. Asmanex,750 mg. Colazol,
Rowasa en. (and Colocort en. temporarily),
300 mg Wellbutrin XL, 5 mg. Ditropan XL, 20 mg. Prednisone (for finger and joint pain)
(One Source Multi, Vit. C, PB 8 probiotic acidophilus
L-Glutamine)
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/13/2007 7:49 AM (GMT -7)   

Hey Kingskid,

I believe they determined that my father has RA in addition to UC because of an elevated rf.  Plus, his affected joint distribution is not always typical of IBD-related arthritis.  My mother had RA as well, as part of MCTD, and I have a slightly elevated rf and also carry a dx of RA.  None of us have typical RA--it is a symmetrical arthritis, but doesn't hit just the small joints of our hands and feet.  With me, it includes my shoulders, hips, ankles, and wrists in addition to hands and feet.  It started in my hips and shoulders, which I understand is not traditional RA.  But it was the same for my mother.  My father had more unusual things, like the excruciating heel pain that goes along with IBD-related arthritis.

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Kings Kid
New Member


Date Joined Jul 2007
Total Posts : 12
   Posted 7/13/2007 7:54 AM (GMT -7)   
El,
Thanks SO much. I am very blessed to be able to learn so much through this message board!
:)
38 Yr. old female
75 mcg. Synthroid, 220 mcg. Asmanex, 2250 mg. Colazol x3,
Rowasa en. (and Colocort en. temporarily),
300 mg Wellbutrin XL, 5 mg. Ditropan XL, 20 mg. Prednisone (for finger and joint pain)
(One Source Multi, Vit. C, PB 8-probiotic acidophilus
L-Glutamine)
 

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