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Crohn's Disease Forum » Your Story » Newbie - joint pain, what helps?!?!


09-29-2014, 08:10 AM   #1
AmyJo
 
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Newbie - joint pain, what helps?!?!

Hi there, new to the forum - and pretty much to Crohn's.
Diagnosed after ending up in hospital with severe flare up July 1, 2013.
Was on prednisone for 3 months. Currently taking 4G of Pentasa a day, vitamin D, B complex with C, and Iron. Went off iron for a bit but started back on as energy levels dropped noticeably.
I'm pretty lucky. Pretty much have been in remission for last while, with the exception of mild to moderate stomach pain and bathroom issues.
My main concern lately is joint pain. For 3-4 months I experience mild to extreme joint pain. Mainly fingers, wrists, knees and feet. Sometimes it's so bad I can barely walk or hold a glass. It's affecting my sleep, always worse at night - usually starts getting worse around 4/5pm. I've tried tylenol, tylenol arthritis, baths with Epson salt, Enamul gel...nothing works.
Sometimes it just annoying aches, sometimes unbearable pain. I've even resorted to taking an Oxy a few times, which helps - but they keep me awake all night so then I'm just beat next day.
I have another GI apt next week, but does anyone have any advice???
Thanks in advance 😃
09-29-2014, 08:18 AM   #2
DJW
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Hi and welcome.

You've already tried the stuff I use for joint pain. I'm glad you have a GI appointment next week.

Sending you my support.
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09-29-2014, 08:24 AM   #3
AmyJo
 
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Thanks Dave! I mentioned at my last apt. He said we'd do bloodwork and then go from there. Initially he said I could call in for results and then either get another colonoscopy or see rhuematoric specialist, but then his office called and told me to come in next week.
Hopefully they can figure out something. I know we're not supposed to take anti inflammatories - but I really can't "just deal with it". 😕
09-29-2014, 08:28 AM   #4
cody12
 
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If you can handle spicy foods imwould eat that. The capsaicin in spicy foods has been known to treat arthritis for thousands of years. If not you can buy it in pill form. Good luck.
-Cody
09-29-2014, 08:34 AM   #5
AmyJo
 
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Not good with spicy stuff, but will definitely look into a pill form of that, thank you!
09-29-2014, 09:24 AM   #6
Lady Organic
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Hi AmyJo,

i'll respond some more later. First, do you have swelling or lack of flexibility or its mostly only pain your main symptom?
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
09-29-2014, 09:51 AM   #7
AmyJo
 
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Hello, slight swelling but yes - lack of flexibility
09-29-2014, 10:12 AM   #8
valleysangel92
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Hellol AmyJo

Welcome to the forum

There are quite a few possibilities here, joint pain is sometimes a symptom of Crohn's itself, so its good that your GI is aware and that you have had some blood work done but these don't always reflect inflammation in the digestive tract so it might be worth inquiring about some imaging tests. There are also types of arthritis that are associated with Crohns and we can be more at risk of rheumatoid arthritis as having one auto-immune condition makes you more likely to develop others.

Additionally, having Crohns makes us more susceptible to vitamin and mineral deficiencies, some of which can cause severe joint pain. I would recommend getting your vitamin D and calcium levels checked if you haven't already done so.

Apart from that there are of course many other conditions which can cause joint pain, lupus and fibromyalgia are just two examples, so its important to make sure that your doctors are thorough.

As for relief, I find that cocodamol is good for my joint pain. Its not as strong as oxy so it shouldn't keep you up all night, you can start on a low dose, I use 8/500. Alternatively you could use plain codine, again it would be a good idea to start off at a lower dose and see how you feel with it as codine can have a constipating effect.
I have been told by my IBD nurse that it's ok for me to use gels and creams with NSAIDs in them as long as I don't take tablets with them in, so I use an ibprophen muscle rub sometimes. Make sure you check with your own nurse or GI first though.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin

Last edited by valleysangel92; 09-29-2014 at 11:00 AM.
09-29-2014, 10:23 AM   #9
baistuff
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Peripheral IBD arthritis (hands, feet, arms, legs) typcially coincide with active GI issues. Especially since you are claiming pain and "bathroom issues," it is very possible you are not in remission at all. I agree with the blood work, but should also consider imaging and endoscopy.
09-29-2014, 09:24 PM   #10
my little penguin
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Enteropathic (en-ter-o-path-ic) arthritis is a form of chronic, inflammatory arthritis associated with the occurrence of an inflammatory bowel disease (IBD), the two best-known types of which are ulcerative colitis and Crohn's disease. About one in five people with Crohn's or ulcerative colitis will develop enteropathic arthritis.
The most common areas affected by enteropathic arthritis are inflammation of the peripheral (limb) joints, as well as the abdominal pain and possibly bloody diarrhea associated with the IBD component of the disease. In some cases, the entire spine can become involved as well.


From:
http://www.spondylitis.org/about/ibd.aspx


When you have arthritis associated with crohn's it is called
Spondylarthritis .
See link above.
DS has the kiddie version.
Sometimes the arthritis follows the GI flares
Fix the Gi stuff and the arthritis goes away.

Or you can have arthritis that is independant of gi flares.
DS has this type
It doesn't go away when crohn's is under control.
Rheumo is the best one for helping you figure out what it is joint wise.
GI can fix the Gi tract and Rheumo help with the joint pain swelling etc

It works better as a team.

Good luck
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09-29-2014, 09:37 PM   #11
Lady Organic
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Hi again,

I'll share with you some of my experience and what I know about arthropathy in IBD. Arthropathy (arthralgia and arthritis) is the most common extra-intestinal manifestion of IBD. Here is the ONLY quantitative study about peripheral arthritis in IBD. It was published in 1998, by Orchard and al, and to date, its the only source of empiric information on the subject. The difference is also explained between IBD Arthralgia (pain only) and arthritis (pain, swelling -can be minimal just like my case). I suggest you print the article for easier lecture, as it is filled with so much information.

http://gut.bmj.com/content/42/3/387.full.pdf+html

some GIs, even rheumatologists are not aware that there are 2 types of peripheral IBD arthritis, as found by Orchard and al... My first rhuemy had no clue

Type1 (most well-known): dependant of IBD activity (announcing or during a flare) or
Type 2 Independant, when there can be no IBD activity, so even when in remission

The 2 types can intertwine, but in general, they present as 2 distinct types with different pattern of disease. Type 1 larger joints and moving around, type 2 mimicking rheumatoid arthritis, (another disease of the joints), symmetrical/bilateral joints affected and affecting small joints primarily such as hands. As you will see in graphs of the reaserch, MCP stands for the joints in the middle of the hands., which are the most commonly affected in IBD arthritis type 2.

Here's my story. My arthritic symptoms in both wrists and fingers started in january 2013, right after a CD remission with 50 mg of tapered prednisone and overwork with hands... I did have pain, little swelling and great lack of flexibility (even more in the morning or after lack of activity.) Nowadays, I barely have pain anymore, but only little lack of flexibility. My condition always improuved slowly since it first started, I am lucky. IBD peripheral type 2 (which i am) episodes lasts around 3 years average as you will see in the tables of the article. I seem to fall in this average, luckly and i feel pretty confident the arthritis will be gone within the next year if I continue on this trend.
Arthritis type 1 and arthralgia fallow the course of IBD activity and will usually resume when IBD is treated.

I had a horrible 8 month journey with my first rhuemy and its a chance I finally met this nice surgeon (where the rheumy sent me for operation with wrong diagnosis!!!) because he,s the one who propose I do a BONE SCINTIGRAPHY, he strongly suspected I had arthritis, and not other conditions diagnosed by the rheumy. I cant blame my GI and GP because we thought we could trust that rheumy at first... BS is the most sensitive test to differenciate arthralgia and arthritis. all previous tests (blood, ultra-sound, MRI) were normal. the BS revealed abnormal chronic mild activity around my upper body joints. So finally I was diagnosed properly and prescribed methotrexate instead of my purinethol when I returned to the rhuemy. (I wish i had been proposed sulpha at first wich is less toxic, along with my purinethol, but I was unaware of all possibilities at that point) so i coulnt discuss much my treatment with the doctor and simply accepted what was proposed. I after changed Rheumy when I got thr real diagnostic.happy with the new one!

you can also read further more some of my threads when I first came here in the forum in search for answers :http://www.crohnsforum.com/showthread.php?t=57693

I tried MANY alternative treatments you can see in my thread, such as even EEN, whicis typically used in CD. The fallowing study shows that EEN has comparative effect to prednisone (cortico-steroids) on reduction of symptoms in rheumatoid arthritis.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2805936/

Its the only study about EEN and any arthritic disease. I pushed for it to my doctors and I gave it a try last february, but not much effect unfortunately in my case. Since you have CD and as another poster mentions it, it seems unclear your CD is still a bit active or not, maybe EEN could be a possibility as a whole treatment if your CD is active. This treatment option will most likely never be offered to you since you are in Toronto and over 18 (in North America, only pediatrics are offered EEN, as opposed to other places in the world such as UK or Israel where its very popular also in adult as treatment for CD). So in case of CD or real arthritis, if EEN sounds appealing to you and prefer trying an alternative before medication, you can discuss about it with your doctor. Some people find it very difficult to fallow EEN diet, but for me it was alright.

Till this date, Ive always been in search for alternative help over phamaceutical options, which I want to keep for ultimate resources. Each individual is free of choice, of course. alternatives can be Omega 3 fish oil, curcumine extract, acupuncture, etc... among all the natural things I have tried, curcuminoid extract is the only one which made a clear improuvement. always best to ask your doctor before trying anything.

Several medication can be offered for IBD arthritis, prednisone, salazopyrine(sulpha), methotrexate, and biologics, some people tried LND (low dose naltrexsone). I am currently on methotrexate (not much help, but yes for CD), tried prednisone 15 mg in february 2014 = great help for morning stiffeness, comparative as Curcuminoid extract for me). In May, I tried sulpha for a month, but chose to discontinue it due to possible side effect, so I didnt test truly its efficacy on me.

For arthralgia, my first GI mentionned Cymbalta, an anti-depressant witch has the capacity to block pain signals. The website of Cymbalta is pretty informative on the subject.

Your GI can recommend a rhuematologist. All of this takes a lot of time unfortunately (3 to 6 months) and so do all the testing for diagnosis. If you describe your symptoms as debilitating as you mention sometimes difficulty walking or even holding a glass, if you are treated in a hospital which offer rheumatology, you GI will most likely be able to ask for a emergency appointment in the very near future. They normally keep spots for emergencies and rhuematologists are more available than GI who have to split between endoscopy and clinic. Ive read several posts in the forum of people with joint issues being told by their doctors to ''suck it up'' or were not taken seriously. Makes me so sad. This can happen unfortunately, so dont come out of your appointment without a plan for this pain
09-30-2014, 07:46 AM   #12
baistuff
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I think we need to clarify some terms here.

Enteropathic arthritis, though very often associated with IBD can also follow GI infections and often self limited. It is a form of what is called reactive arthritis, which can follow any infectious or any other process than can trigger the immune system in some way. There is actually a triad called Reiter Syndrome which includes arthritis, urethritis, and uveitis. We have moved away from the term Reiter syndrome b/c 1) he was a Nazi and 2) most don't get all 3 symptoms. The point is, reactive arthritis, can be associated with any number of inflammatory or infectious processes.


The spondyloarthropathies actually consist of 4 subtypes

1) Psoriatic arthritis
2) Ankylosing spondylitis (with or without IBD)
3) reactive arthritis (see above for more detail)
4) Inflammatory bowel disease associated arthritis

As a subset of #4, IBD arthritis, there are 2 types

1) Axial- ankylosing spondyllitis and sacral ilitis (the ilia bone, NOT the 3rd part of the small intestine.)
2) Peripheral arthritis

Of these, #2- the peripheral is much more common, affects the hands, feet, arms legs, and usually is active only with active GI disease. It waxes and wanes and rarely causes long term damamge. Treatment is as needed.

#1- axial disease, much less common, but can become chronic, progressive and lead to deformity and instability regardless of how well GI symptoms are controlled. Often needed to be treated aggresively.

Though NSAIDs are usually first line treatments for all of the above, because they are no no's with IBD, Axial disease is often managed wtih TNF-Alpha meds. Peripheral disease is often controlled by getting GI issues under control.

I know this all can be confusing. I hope this helps.
10-01-2014, 01:26 PM   #13
AmyJo
 
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Sooooo much info - thanks all!
I guess until I see my GI next week its just continue to suffer and deal with it
I appreciate the info though, and now have some insight as well as questions for my GI!
10-02-2014, 11:37 AM   #14
my little penguin
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Good luck with the Gi

And don't hesitate to ask for a Rheumo consult.

Sometimes the arthritis is independant of the gi disease activity .
It is rare but it does happen and has been documented in case studies .
My son is an example of this.
Having a Rheumo on board from the beginning can help you with your joints while you wait for the Gi stuff to get under control.
Things like types of PT , exercise etc... Plus assess your joints.
DS started out with arthralgia /myalgia with flaring crohn's.
Since we were already being followed by Rheumo it was easier to see when the disease (arthritis) progressed and get dx quicker .
Add in the non medicine therapies were already started to try and keep things as improved as possible .

Hope things calm down quickly
10-05-2014, 12:13 PM   #15
Sailorluna
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my rheumatologist diagnosed my joint issues as inflammatory arthritis from the crohns and she has me on weekly methotrexate and periodically on low dose prednisone. It works for me. Good luck! hope you find relief.
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

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Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine

Last edited by Sailorluna; 10-05-2014 at 01:48 PM.
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