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Posted 5/2/2011 1:47 AM (GMT 0)
I know there has been threads on this subjuct before, but I had never had this problem until this weekend.  I was diagnosed with UC 2 years ago and am on Asacol - 2400 a day.  I also take meds for GERD.  This weekend my knees, hips on one elbow have been bothering me quite a bit.  Can anyone give me wome advice or guide to on how to research previous posts on this subject?  Thanks.
Posted 5/2/2011 2:14 AM (GMT 0)
I know what your going through right now cause I'm right with you. Prednisone gets rid of the pain but its a nasty drug I'm almost done with and not going back unless its an emergency. My GI switched out my lialda for sulfasalazine and it seems to be relaxing the pain a little but I'm not too sure about it cause its only my second day. How is your UC? if its controlled or mild I would talk to your GI about the sulfasalazine. I myself am going on remicade cause my UC feels as bad as my joint pain. My GI said it should help with the joint pain but a few people posted in here they think the remicade caused their joint pain. Makes me a little nervous. If your joint pain gets worse I would see about getting a refferal to a rheumy.. hope you feel better soon
Posted 5/2/2011 2:40 AM (GMT 0)
Since having been diagnosed with UC, I too have been suffering with great joint and bone pains - all over my body. I've been told this is what's called Reactive Arthritis - which often times comes along with the UC, in those unfortunate ones :(

Although I am currently in remission with the UC through Transdermal LDN, I still am in great pain with the joint and bones pains every day. I am hoping that eventually the LDN will help with that too.

Posted 5/2/2011 3:29 AM (GMT 0)
about 25% of IBD patients have joint pain. For a long time, that has been my primary complaint - not the gut problems, but my hands, wrists and knee. A few years ago every single joint in my body was hurting and I brought a rheumatologist onto my team to help me with this. After taking an extensive history and a ton of blood, he finally concluded that yes, it was enteritis arthritis. This is not typically damaging to joints, but I think you should go see a rheumatologist to be sure.

My rheumy strongly encouraged my GI to get me better gastro treatment, because the basic theory is that inflammation in the gut is triggering inflammation in the joints. After a long time, my GI put me on sulfasalazine and increased my Pentasa. Since then my hands have been mostly fine. I still have knee pain. My rheumy and GI disagree about how aggressive my meds should be, and I guess I'm not suffering enough to want to push the issue and go onto an immune modulator or biologic med.

You didn't say how old you are - one thing that I think complicated my situation was crazy hormonal cycles. I started perimenopause around the time that the joint pain got really bad. My hormones were all over the map, and I could totally predict my menstrual cycle by how my hands felt.
Posted 5/2/2011 3:40 AM (GMT 0)
Yea, that is not unheard of, the GI blaming the joint pain on inflammation. I think i recall the GI I was at last (I have two) at even telling me, well that's part of the reason why you're achy :/

I see a Rheumy and he RXs me medicine to deal with it. I still feel like garbage some days of the week. Just part of the game. I deal though. Swimming or Aquatic Therapy/Aquatic Yoga (Just go to your Gym) by the way is amazing for the joints if you never tried. Get on that, if you can. Your insurance should cover fyi.
Posted 5/5/2011 2:49 AM (GMT 0)
Thanks for the advice. By the way, I am 63 and was diagnosed just two years ago although I think I have had bowel problems most of my life, but the blood, muscus and pain just started two years ago. I have been lucky as Asacol works for me. I have only had two flares and they were quickly controlled with a somewhat short time with prednisone and the joint pain seems to come and go. It wa spretty bad over the weekend, but has all but left except for mild discomfort At least nexttime I if it sticks around, I will know what to do. Thanks again.
Posted 5/5/2011 11:53 AM (GMT 0)
I am also in the category of joint pain sufferers to go along with my Uc. I have had many tests to determine whether or not I had Lupus or RA and all came out negative (thank goodness!). So my rheumy thinks that I have Peripheral or Reactive arthritis.

I find that gentle exercises help the most. I also have Fibromyalgia so the exercises help with that as well. Ice packs and heat also works great along with Tylonel Arthritis.

Btw, exercising will help build up the surround muscles which in turn can help support the aching joint.

I still have pain but now it's down to degree - on how bad they hurt on a certain day. There is nothing I can do for my hands unfortunately. I have bad OA in several of the knuckles and finger joints. I get corticosteroid injections about once a year or so to help ease the inflammation.
Posted 5/5/2011 7:33 PM (GMT 0)
Add me to the list.  I had UC many years ago at 15 (had my colon removed as I wasn't respoinding to meds so have a jpouch now...and so technically no longer have UC).  about 7 years after my uc, I started getting pains in my back and legs when sitting.  It's been diagnosed as sacroiliitis, inflammation of the SI joints.  I have no joint deterioation or bone fusion, but have been told it's related to my inflammatory bowel condition (i.e. uc).  It's gotten pretty bad with flare ups if I do anything (or dont' do anything...i.e. sit too long), pain at night when lying down and daily back pain so am going to try physical theraphy.  Am sorry you are having joint issues as well.
Posted 5/5/2011 7:57 PM (GMT 0)
Lu2011 &  Red_34,

Sorry to have you be a part of the club (bad one at that!) of Reactive Arthritis.

I have done lots of reading about the success of diluting Oil of Oregano Tincture with extra virgin olive oil, and applying it to arthritic joints and it helping greatly. I finally ordered this product and am going to try it out.

The joint pains and bone pains, for me are the worst at night and while sleeping (it wakes up me it's so painful), so I will try and apply this to joints and legs to see if it works.

I will keep you apprised :)

Posted 5/6/2011 12:10 AM (GMT 0)
InSoFla, I also am in lots of pain during the night.  Funny enough, the pain is in my legs (i.e. since issue are SI joints)...it's a very strong ache.  Had this in pregnancy and now the pains are there all the time.  What cream did you buy?  I find bengay helps on my SI joints, but it's probably more of a numbing effect rather than actually helping with the inflammation.  Keep us posted if it helps.
Posted 5/6/2011 12:13 AM (GMT 0)
Definitely keep us update InSoFla. I also have pain when I sleep. I take a sleeping aid and even then at times it wakes me up.
Posted 5/6/2011 3:41 PM (GMT 0)
Lu2011 & Red_34,

I haven't tried the oregano oil yet, but I will and let you know how it works. I sure hope it does!

Posted 5/6/2011 4:36 PM (GMT 0)
I was told in 2008 that I had UC but it wasn't untill 2010 I was hospitalized from being so sick from it. AT that time I received 2 units of blood, IV meds and steriods to get it under controll.  I take 3200mg of Asacol HD a day and have a for a year now. Over the last month I have had a lot of knee pain in both knees and can't wonder if it from my UC.  I am pretty sure I am starting to flare again and am very flusterated with the whole thing. I am only 36 and have a life time of dealing with this, any suggestion on how to make it easier?

Post Edited (littles) : 5/6/2011 10:39:27 AM (GMT-6)

Posted 5/7/2011 2:57 AM (GMT 0)
littles,

3200 mg of Asacol - wow, that's alot! Are you able to tolerate that much without any complications?

I think your knee pain could be Reactive Arthritis, but generally this affects several joints, not just one.

Mine affects my neck, down my whole back, then in my hips, lower back, knees, ankles, and then every joint in the foot, and the bones in my legs too :(

The pain is especially bad at night, and as a result, even with sleeping pills, I cannot get more than 4-5 hours of sleep (and I am one who needs a good 9 hours to feel human!).

With regard to your recent and ongoing flare, I would suggest a few things you might consider.  I got very sick on the mesalamine pills, but found I could tolerate the Canasa suppositories.

I would recommend, besides the SCD diet, Slippery Bark Powder (not in pill form, the most effective form is powdered) taken a few times a day - this is nature's mesalamine: it coats the whole digestive tract.

Also, as a probiotic: VSL#3, it's got 450 billion active cultures and is made especially for those with Ulcerative Colitis.

Off course, stay  off all dairy - though you could have Almond Milk.

And lastly, I would suggest to get yourself on transdermal LDN (here's the thread to a prior post I made on it:
https://www.healingwell.com/community/default.aspx?f=38&m=2079694

Keep us in the loop as to how you're doing.

Posted 5/7/2011 6:26 AM (GMT 0)
@ InSoFla

UC is common with spondyloatropaties - Ankylosing spondylitis or Undiferentiated spondiloatropaty. Reactive Arthitis is verry rare as far as i know in people with UC.
Kneee pain is common with AS, in fact for some it starts from there... * my case included.
Also you back pain...
I suggest you see a rheummy. In fact all people with joing pain and UC should see one.
Posted 5/7/2011 9:03 AM (GMT 0)
It is recommended that you choose sulfasalazine:

Sulphasalazine may be better for patients with colitis associated arthropathy ( Joint Pain )

www.ncbi.nlm.nih.gov/pmc/articles/PMC1773399/
Posted 5/7/2011 11:56 AM (GMT 0)
Alinus,

I haven't been wanting to see a rheumatologist - as far I as know, all he's going to sugggest is my going on meds which have high side effects and cost alot of $$ (and snce I have lousy insurance, if you could call it insurance, it wouldn't be covered.).

But thanks for the advice, I guess I may have to re-think that - living a life of full is no pleasure.

Posted 5/7/2011 12:21 PM (GMT 0)
You are welcome.
It's your decision to take or not the medication, but if you have AS or USpA, you definately should know about it.

well. For all those with UC and spondyloatropaties i highly recomend a modified SCD diet with the exclusion of all starch and sugars.. for me it gave my life back. It controls my UC and my AS both. I did not took an NSAID for more than a year.
Posted 5/8/2011 12:48 PM (GMT 0)
aguywithuc,

Isn't sulfasalazine basically the same as mesalamine? I have an intolerance to mesalamine products - it gives me pretty bad stomach pains, and terrible diarrhea.


Alinus,

I was genetically tested for the HLA-B27, which is the genetic marker for UC, other auto-immune diseases, as well as Ankylosing spondylitis, and it came back negative.
However, I just came across this, from: http://www.labtestsonline.org/understanding/analytes/hla_b27/test.html

"If HLA-B27 is negative, then the association is not there. This does not, however, mean that the person does not have the suspected condition, as a certain percentage of people with each disorder will be HLA-B27 negative.

  • Ankylosing spondylitis: about 90% are HLA-B27 positive
  • Juvenile rheumatoid arthritis (JRA): about 80% are HLA-B27 positive
  • Reactive arthritis: about 60-85% are HLA-B27 positive
  • Isolated acute anterior uveitis: about 40-70% are HLA-B27 positive
Posted 5/8/2011 2:52 PM (GMT 0)
Right. You should see a rheumatologist to fully understand your joint pain. Your rheumatologist should work with your GI on making a treatment plan.

My rheumy suspected AS for me because in addition to joint pain in my hands, wrists, elbows and knees I have arthritic changes in my sacroiliac joint. I also was negative for HLA-B27. Nevertheless, he scheduled an MRI of my pelvis to compare against films taken a couple of years before to see if there were significant changes. There were not. His conclusion was that I simply had enteritis arthritis and recommended a more aggressive treatment of my bowel disease. My GI got me on entocort (for 6 months) and sulfasalazine (in addition to my 3g/day of Pentasa) and my hands have felt fine for years. My knee still hurts, though.

My GI is reluctant to change my meds from 5-ASA to immune modulators or TNF drugs, so I think I'll have to live with the knee pain. My hands were much more severely affected and I'm very glad to have effectively relieved that pain with the sulfasalazine. If you can't tolerate 5-ASAs it might not be the way to go for you, but I do agree that seeing a rheumatologist will help you and your GI establish a good medical plan to improve your quality of life.
Posted 5/8/2011 8:29 PM (GMT 0)
kazbern,

Thank you. I am due to see my GP in June and will ask him for the name of a good Rheumy.

Curious if you've ever had your SED rate done? Mine went from 48 to 34 - to me that's a good indicator of inflammation going  down since starting with the LDN - this little tid bit  of course, does nothing to help me with the joint/bone pains I complain about.

I do believe you're right, perhaps in concert the GP and Rheumy they might actually care enough to help find an alternative that might help.

Posted 5/8/2011 11:57 PM (GMT 0)
My sed rate and my c-reactive protein levels have never been very elevated, even in the midst of a bad flare. So there you go. I don't think my GI was taking me very seriously when I used to complain about my hand pain. One day the joint on my wrist got red and swollen in addition to being painful - it just happened to be a day when I was seeing my GI. I showed it to him and that seemed to get his attention. After that he was quite interested in resolving my hand pain!
Posted 5/9/2011 3:09 AM (GMT 0)

InSoFla said...
aguywithuc,


Isn't sulfasalazine basically the same as mesalamine? I have an intolerance to mesalamine products - it gives me pretty bad stomach pains, and terrible diarrhea.

Not to me, switching got me out of a terrible flare. The link I provided detailed the differences but you may still not be able to take it as they are all 5ASA class drugs I believe.
Posted 5/9/2011 4:27 AM (GMT 0)

kazbern said...
My sed rate and my c-reactive protein levels have never been very elevated, even in the midst of a bad flare. So there you go. I don't think my GI was taking me very seriously when I used to complain about my hand pain. One day the joint on my wrist got red and swollen in addition to being painful - it just happened to be a day when I was seeing my GI. I showed it to him and that seemed to get his attention. After that he was quite interested in resolving my hand pain!

of course he was, it's a clear sign of arthitis...

@ InSoFia

sulfasalasine contains 5ASA but also contains sulfapiridine, wich is a strong antibiotic and antimicotic. the sulfapiridine is more toxic and it's the one that usualy gets the most bad side effects for those who use sulfasalasine: liver&kidney functions. Some do well in it though.
but sulfasalasine is suppose to thread better the atrhitis that is usualy associated with UC. for some people it works (for example my cousin wich has AS too). For me it didn't.

however, there are people - few - that can have intolerance to 5-asa's too.
Posted 5/10/2011 1:15 PM (GMT 0)
Alinus & aguywithuc,

Thank you both. I guess I'll have to discuss with my GP and see what he says. I'll let you know. He's usually pretty hands off when it comes to any other specialty.



 

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