Crohn's Disease Forum » Extra Intestinal Manifestations » Arthritis » New to joint pain need advice

08-03-2014, 10:32 PM   #31
my little penguin
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Join Date: Apr 2012

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For those having joint pain the extremities or pelvis area ...
Ask your Rheumo about
Spondylarthritis )SpA.
It is very common in those with crohn's .
And can run independent of Gi flares .
DS was just dx with the juvenile form about a month ago.
Good luck
DS - -Crohn's -Stelara -mtx
10-20-2014, 12:14 PM   #32
Join Date: Aug 2013
I have Crohn's, but have been in remission since May 2000. It looks like I am heading for a flair and it is attacking my joints as well. I have GP appointemnt coming soon. And Gastro in a month or so (no earlier apps for new patients ) My knes were acting up and the top of my pelvic bone (?!). Now my right thumb is killing me. I have been taking 220 mg of Aleeve twice a day just to see if it would help with inflammation before I go to GP. It did help with the knees and pelvic bone, but it does not do much for the thumb. I am not on any other medication. Thejoint - first from the nail - is definately inflamed and swollen.

My question is - what would you expect the doctor might suggest? Should I automatically go to rheumatologistas well (both of my grandmas have arthritis - not sure what kind)? X-rays? I have been going through the posts but have not found one about a newbie like me yet . I feel a bit silly asking because I am not as bad of (yet!) as others, but I have been through my share of hell 13 years ago and don't want to wait for things to get much worse before acting. Thank you so much for any advice.
Angie, a gentle reminder that while TYLNOL is non-steroidal, and IS a pain reliever, and IS easy on the digestive tract, it is NOT an antiinflammatory medication-and for some people (myself includede) "joint pain" can be eased considerably by specifically targeting the inflammation which usually accompanies it.
(Also, keep in mind that acetomenophen can cause serious damage if one exceeds the recommended daily don't, unless you and your physician are making an informed decision that the relief is worth the risk. )

One of the problems in replacing NSAID's with non-antiinflammatory pain relievers is finding the right antiinflammatory agent for the specific problems that affect the person involved.

Acetamenophen did very little for me after my GE mandated the switch from naproxen, which was a strong indicator that inflammation was a main factor rather than a minor player. I ended up using a combination of small dose tramadol for pain and larger amounts of fishoil/Omega 3 for inflammation, which seems to work-for me.
10-22-2014, 11:23 PM   #33
Senior Member
Join Date: Nov 2011
After a couple years of taking many supplements, specifically to remedy my worsening SI joint, I've finally narrowed it down to a few factors: 5,000 iu D3 daily, 1-2 grams Black Cumin Seed, and 8 hours of sleep daily. The Black Cumin seed oil was the missing link for me which I discovered a few months ago.

I'm not sure how to classify the type of reoccuring sacroiliac joint pain I get, but I have found something that works for me if I take it daily, in the morning, on an empty stomach (I have had digestive issues when taken with foods and when taken within 3 hours of LDN). If you do research on Black Cumin Seed oil and IBD, or BCS oil's scientific botanical name which isn't actually related to cumin spice at all, you will find that this stuff works locally on the gut's opiate/endorphin system--kinda sorta related to LDN's rebound effect. However, this means you do not want to mix LDN and BCS oil or you will feel nausea. However, while taking BCS oil, I now can have coffee like its water and I no longer am dependent on quality probiotics for solid BMs--this is a significant indicator for me since I've depended on them for 7+ years.

It is a 500 mg black cumin seed extract, called Thymocid, which I take in a supplement by Life Extension called Black Cumin Seed Oil. I previously tried their product with curcumin mixed in, but the single supplement works just as well. I haven't tried any other brands, but this can be found reasonably priced, around $15 per month if taking 2 a day, online at some mega-warehouse websites.

I did not test positive for HLA-B27 and my SI joint pain occurs independent of any digestive flairs, but is directly related to not enough sleep and D3. I only get joint pain in the sacroiliac joint, nowhere else. My useless doctor suggested I start taking Pentasa (or maybe Asascol) daily for this axial joint pain--in my opinion, Pentasa is an expensive placebo, which may have limited efficacy for those with colitis symptoms and maybe peripheral joint pain, foisted onto crohn's patients with generally mild cases.

If I take 2 capsules of Life Extension Black Cumin Seed Oil daily, I don't get my si joint pain. I've been upping my dose occasionally (to 1.5 or 2 grams) if I go days without reaching my 8 hour per night sleep goal and start feeling joint issues arise--I am a hopeless procrastinator when it comes to getting to sleep at a decent time.

Do a search for "The Joint-Gut Axis in Inflammatory Bowel Diseases" and maybe do another for Black Cumin Seed and inflammation or ibd to see why this might work. I still haven't parsed through that first article...

Please let me/others know if you try this. It might take a couple weeks for the oil to work, maybe not. I didn't take it daily until I gradually noticed the days I didn't take it, due to aforementioned effects. This is actually very worth trying in my personal experience.

Nigella sativa (Black Cumin) Seed Extract Alleviates Symptoms of Allergic Diarrhea in Mice, Involving Opioid Receptors Swantje C. Duncker, David Philippe, Christine Martin-Paschoud, Mireille Moser, Annick Mercenier, Sophie NuttenResearch Article | published 29 Jun 2012 | PLOS ONE 10.1371/journal.pone.0039841
"Give away the stone. Let the oceans take and transmutate this cold and fated anchor. Give away the stone. Let the waters kiss and transmutate these leaden grudges into to gold. Let go." MJK

Crohn's Disease Forum » Extra Intestinal Manifestations » Arthritis » New to joint pain need advice
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