New to joint pain need advice

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.

Aleeve is an nsaid and with a Crohns dx this is not a good pain reliever for you. Tylenol would be a better choice. This is the first thing the doctor will tell you. I had a bad hip myself. A heating pad can be helpful too.

Alieve

Hi,
No alieve for Crohns patients!!! I was put in the hospital for ibprofen use.....I would only take tylenol if I was you!! Just saying.....

Thank you. Just shows you it's been a long time since my last bout with the disease. I'm sticking to Tylenol from now on. My seven year old just wrapped my hand (the wrist started hurting too). I had to explain why I could not properly hold scisors and she immediately ran for ace bandage. I have not even thought about doing that . I am pretty tired too.
I'm going to use hot water bottle also. I can't unfortunately use pain relieving cream on the thumb joint since I have cracked skin and it burns like crazy :ywow:

I would talk to your GP about your joint pain. If you can, take pictures of the swelling and take them. It will help your GP to determine if you should go to an RA specialist. Sometimes the blood test and even ex-rays don't tell them enough. Speaking from experience, I am.

Thank you riversilt. Pictures are a good idea. I will have my hubby take some.
I just went to my GP today and I am a bit disappointed. She did give me a script for x-ray, ordered some blood work, and said she could send me to an orthopedic specialist for a cortisone shot, but has not mentioned RA or really anything I can do to make the joints feel better (except Tylenol). I somehow did not press the issue - just felt too rushed. I'll wait for results of those tests, but as you say they might not show anything. I can always bring the pictures to my GI appt in early March (my GP is trying to move it to an earlier date) or any future RA appts. My hands also feel stiff. I think my grandma will be a better resource than my GP - she's had arthritis for number of years now. :soledance:

Hi Tea_Angie! I actually joined this forum just to respond to your post. Last February, I started to feel a bit of joint pain and woke up one morning unable to get down the stairs without severe pain. My Crohns had been in remission for 6 years. I thought I had Lyme disease, but it turned out to be a major flare that put me in the hospital for over a week. The flare hit my joints more than it did my gastro system, and it got to the point where it was simply excruciating to move or even to be touched. The worst part of my body then was my Achilles tendons, so it was nearly impossible to do stairs. Between that and some strange skin lesions, I was able to diagnose that it was Crohn's from of all places, Wikipedia. I even had to show my docs a pic from Wiki of a typical Crohn's skin rash before they would settle on an actual Crohn's diagnosis.

Cut to a year later and my gastro symptoms are great, but my joint pain is literally crippling. I am on Humira and 6MP, as I could not go back on Remicade. I have had a Rheumatologist since last July because it is my chief complaint. I have deteriorated to the point of only being able to walk with a cane and the pain in my body is so bad that I have to limit even the most simple of daily activities. None of the doctors I see know what to do, so I was referred to Mt. Sinai, as my gastro calls it "the mecca of all things IBD". I am seeing someone there in Feb., and feel very blessed to live close enough to make it accessible. He is literally my last hope.

My sed rates (ESR - measures inflammation) continue to be more than double the upper limits of normal and it is all joint stuff, not intestinal. It's a simple blood test, and I would start there. Also, I would most definitely find a rheumatologist because gastroenterologists are simply not equipped to deal with this manifestation of Crohn's.

The areas that you are describing as painful are typical to Crohn's. My chief complaint is the girdle area - lower back and pelvis - and I was told by the rheumatologists in the hospital that it is the area of the body that is most typical of Crohn's. It hurts to lift my leg to walk because of the pain in that area. All of my major joints are inflamed - this week it's my elbows, and I have inflammation and pain in all of the joints in my dominant hand.

I don't want to freak you out by sharing all of this, but it would have helped me immeasurably if someone had diagnosed all of my symptoms as Crohn's earlier than they did, so it's my hope that it will help you get the medical attention you need. Be well and feel well...

I just want to share w/ everybody what I take for my crohns related arthritis. I take Cymbalta http://www.cymbalta.com/Pages/managingosteoarthritis.aspx I have been taking it for almost a month now and my body feels so much better. My pain was in my hips (mostly left) and left shoulder. Nothing was helping the pain. Not even narcotics!! 2nd day on cymbalta and the pain was almost gone. Cymbalta is actually an antidepressant, but is being marketed for management of chronic musculoskeletal pain. I dont want to come off as trying for push this pill, but since it has worked so well for me, if feel I must. Anyway I enclosed the cymbalta web page. Take a look. One way or another I hope you can find some relief

Joint Pain and weakness....

Boy, I was so glad to be able to relate to all of you! This recent flare totally affected my joints...especially my knees and elbows, although I've had bad hip pain in the past as well. Its been over a month and I still have such weakness in my knees! Well going for a colonoscopy tomorrow and then a MRI of my intestines (anyone ever have that before?) Hopefully we will see if the Crohns has spread to my colon (woo-hoo lucky me!!) :ywow:

Never had the MRI, so let us know how that goes. Have fun with the colonoscopy, especially the prep...:biggrin: Hope it shows that you don't have inflammation. Be well!

Hi Angie,
I'm really sorry to hear that you are experiencing a flare again.
I have just started to feel relief from joint pain for the first time in 2 yrs and three months, so the good news is it does pipe down, the most important thing is ready and I mean at least 11-12 hrs for myself a day even now!
I just started (16 weeks ago) 6- mecaptopurine which I believe (with rest and a change of diet) has brought me sweet sweet remission. I hope this information helps you Angie, wishing you good health xxx

try DMSO it works, its cheap Google: DMSO BZ for all information I am amazed!!!! its the sure all, cure all I aint lyin

Bernie, was there something that brought you relief from the joint pain, or did it just sort of dissipate on its own? I swear by 6MP and call it my one tried and true med. 6MP and Remicade brought me a 6 year remission, and I am now back on it along with the Humira. I'm so happy that it is treating you well, and wish you continued healing!

Hi Sage,
I'm sorry to say that without 6 MP (which i agree is amazing) there was never any relief, It was always easier if I got plenty of rest (i mean mind numbing amounts) and I was taking Tramadol which helped to numb it, acupuncture didn't work but I have had good experience with reflexology?
I'm almost certain that certain foods can make it worse, now I'm on those energy drinks and 6 MP and finally I am myself again!
I hope you get back to remission real soon Sage and wish you continious health and happiness xx

I just remembered something else that helps me w/the joint pain. light stretching exercises daily!

indianhart said:

Well going for a colonoscopy tomorrow and then a MRI of my intestines (anyone ever have that before?)

Click to expand...

I just had an MRE (MRI w contrast) and apparently they can somewhat differentiate between scaring and inflammation. I posted here
http://www.crohnsforum.com/showthread.php?t=31647
thinking I was headed towards surgery (which it turns out I'm not)

Severe migrating joint pain was my worst symptom. Luckily the humira has stopped all of it. Fingers,toes, knees, you name it, if there is a joint it hurt and throbbed like hell. Seea rhuemy so they can get xrays or mri of your joints to rule out other problems.

I was told i could take 4000mg of tylenol daily. I weigh 190.

So I had the colonoscopy yesterday and my colon is clear!! So now I go next Wednesday for the MRE. Thanks for the blog on how it went I feel at least alittle prepared to go now. did call today because I am taking a mild sedative (fear of tube!) and hoped that would be ok, luckily it is. She said I would be drinking contrast (which killed me during my last catscan!) Im hoping being on prednisone for some time I can tolerate the contrast better, especially since I have to lie on my stomach during the MRI! Thanks for taking the time to explain the process to me! I'll let you know how it goes.....glad you don't need surgery! Is your GI changing up your meds?

good luck! I'm glad it was of some use

I do have to say, the only good thing about being on your belly is it doesn't feel as much like you're going into a cave...

I think I remember only drinking 2 of the bottles of contrast during the CT (that one was almost 2 years ago, I did one last month at the hospital but I had an NG tube in so the nurse gave it to me through that). If that is correct, that would mean I had 1.5xs the amount of contrast with the MRE but I wouldn't swear by that. My friend and I joked about wearing depends to these things, contrast is no fun

As far as my meds go for me, the GI didn't want to see me for 3-4 weeks and he just upped my remicade to 10mg/kg so I'm guessing he's going to want to see how that goes for a bit. I asked the nurse about zofram since I'm pretty nauseous and am not eating much and he got it oked and called it in.

My fingers are stiff too. I hadn't connected that with the crohn's until the GI brought it up. The remicade helped some but they're still stiff (but not too much pain)

Congrats on no colon involvement! I've been wondering about my left side for several months now. Hopefully he will have been able to see that on the MRI one way or the other. Wish I didn't have to wait 3 weeks to get the full story but I know its not urgent, I just need to chill out.

do you have your MRE time scheduled yet? I was suppose to not have anything to eat or drink past midnight the night before so it was nice I have an 8:30 slot

Hi!
I have to be at the MRE place at 9:15 and the test is scheduled for 10 so I don't have to wait too long. I'm on imuran and pentasa right now and doc talked about Remicaide or Humira or surgery after he sees whats going on. I've been pretty lucky having had Crohn's for 15+ years and no surgery yet! Lots of prednisone though and I HATE being on it! It works but makes me feel crazy!:thumbdown: I do take a mild sedative during an MRI so hopefully Ill be relaxed and not effected by the contrast so much! They also said they were giving me something to slow my intestines down also, did you have that? Well again thanks for chatting! :rosette1: Hope you have a pain free day!

oh good, I know someone who had to go in the afternoon, what a pain. I hope it goes well, they did not give me something to slow my digestion down but I am normally constipated beyond belief. I'm thrilled there is a test that can give some indication of scarring vs inflammation, I'd always been told there was no way to know.

have you told your GI about the joint pain? mine seemed to think we should keep with the aggressive meds (even when surgery was on the table) so it didn't get worse.

A gentle reminder for all of you suffering from joint, bone, or muscle pain. Get your vitamin D levels checked. Crohnies are VERY commonly deficient in vitamin D and proper supplementation can make a world of difference. Read this entire thread for more information.

Thanks for the vitamin D advice. My Son has crohns and has been doing great n Remicadxe but has a recent flare of joint pain. I was diagnosed with Rhuematoid arthritis 3 months ago. We have various family members with either IBD or RA, is there a genetic link for both? Anway, neither of us have had or vitamin D levels checked, so we will.

Also a Newbie to Arthritis of Crohn's Disease

Hi Tea_Angie...I am also a newbie to arthritis..started in September with swelling of my knuckles, fingers, wrists, then eventually my elbows and feet. My knees would ache also. The pain then left me.

However, it came back with a vengeance in January. At my gastroenterologist's request, I did see a rheumatologist, because he did suspect I may have arthritis of Crohn's disease. He immediately put me on 10g of Predinizone to bring the swelling down. The following week I did see the rheumy doc..he diagnosed me with arthritis of Crohn's disease. I was also given sulfalazine meds. The swelling came and went, but not the joint pain. :ywow:

So docs increased my Remicade infusion shots from 8 kg to 10 kg. Still taking the sulfalazine twice a day also with folic acid. Going to take my first 10kg Remicade infusion shot this week and still on predinizone.

However, my sister could not stand seeing me in the excruciating pain I was in with my joints that she gave me one pill of Meloxicam...antinflammatory for arthritis...after an hour or two I was feeling 100% better. Going to ask my doc for a prescription to avoid other episodes again.

Sage said:

Hi Tea_Angie! I actually joined this forum just to respond to your post. Last February, I started to feel a bit of joint pain and woke up one morning unable to get down the stairs without severe pain. My Crohns had been in remission for 6 years. I thought I had Lyme disease, but it turned out to be a major flare that put me in the hospital for over a week. The flare hit my joints more than it did my gastro system, and it got to the point where it was simply excruciating to move or even to be touched. The worst part of my body then was my Achilles tendons, so it was nearly impossible to do stairs. Between that and some strange skin lesions, I was able to diagnose that it was Crohn's from of all places, Wikipedia. I even had to show my docs a pic from Wiki of a typical Crohn's skin rash before they would settle on an actual Crohn's diagnosis.

Cut to a year later and my gastro symptoms are great, but my joint pain is literally crippling. I am on Humira and 6MP, as I could not go back on Remicade. I have had a Rheumatologist since last July because it is my chief complaint. I have deteriorated to the point of only being able to walk with a cane and the pain in my body is so bad that I have to limit even the most simple of daily activities. None of the doctors I see know what to do, so I was referred to Mt. Sinai, as my gastro calls it "the mecca of all things IBD". I am seeing someone there in Feb., and feel very blessed to live close enough to make it accessible. He is literally my last hope.

My sed rates (ESR - measures inflammation) continue to be more than double the upper limits of normal and it is all joint stuff, not intestinal. It's a simple blood test, and I would start there. Also, I would most definitely find a rheumatologist because gastroenterologists are simply not equipped to deal with this manifestation of Crohn's.

The areas that you are describing as painful are typical to Crohn's. My chief complaint is the girdle area - lower back and pelvis - and I was told by the rheumatologists in the hospital that it is the area of the body that is most typical of Crohn's. It hurts to lift my leg to walk because of the pain in that area. All of my major joints are inflamed - this week it's my elbows, and I have inflammation and pain in all of the joints in my dominant hand.

I don't want to freak you out by sharing all of this, but it would have helped me immeasurably if someone had diagnosed all of my symptoms as Crohn's earlier than they did, so it's my hope that it will help you get the medical attention you need. Be well and feel well...

Click to expand...

Sage,
I began to cry when I started reading about your joint pain. I won't go into a long story but I would love to know what has happened since your post. I have spent months being evaluated by a rheumatologist b/c my Gastro thought there must be another autoimmune at play along with my Crohn's. I just found out that not tests showed anything else diagnosable. However, the pain I am in is so severe. 7 months ago I ran two marathons two weeks apart and felt great. Now even rolling over at night wakes me with excruciating pain all night. When I wake I can't walk. My back, pelvis, ankles, feet, hands, knees are so weak and painful and stiff I can barely get around.

Where do I find info about this type of Crohn's flare in my joints so I can get my doctor to see what is going on in my body?

Thank you!
Suzanne

Hi Tea_Angie:

This is jxarias1 again....Well needless to say I had to get off of Remicade shots in October. I ended up in the hospital complaining of shortness of breath and severe chest pain. It turns out that my body was producing too many antibodies from being on the Remicade shots for too long. :ybatty:

Since then I started on a new medication, Cimzia. I am my gastroenterologist's first patient to receive this treatment. I take 400 mg every four weeks. I give myself my own shots. I also take Imuran 50 mg and Sufalsalazine 500 mg.

Needless to say, my joint pain, shortness of breath, chest pain are all gone. :smile:I am doing 100% better. I have been on this medication for 7 months now. I would say for the past month and this month I have noticed a bit of blurred vision, few headaches, and random rash throughout my body, but not severe to the point I need to be hospitalized. Just so happy to be mobile again without pain.

Check to see if Cimzia is an option for you. I do recommend Vitamin D supplements as well.

Jxarias its great to hear you have had such great results with cimzia for joint pain. My rheumatologist suggested this treatment for me yesterday and now I am just waiting to get started. I hope it works as well for me as it has for you and long may it continue for you

Oh, by the way, I am using Cimzia for both joint pain and Crohn's disease....killing two birds with one stone....working great so far!!! (7 months on it):lol2:

Best wishes on Cimzia!!!:ghug:

I had awful joint pain before starting meds. Tylenol worked for a minute, but there truly was not much relief and taking Aleve and Advil landed me in the ER. My GI Dr. Was the best listener and began my meds. I feel some relief now.

suschex said:

Sage,
I began to cry when I started reading about your joint pain. I won't go into a long story but I would love to know what has happened since your post. I have spent months being evaluated by a rheumatologist b/c my Gastro thought there must be another autoimmune at play along with my Crohn's. I just found out that not tests showed anything else diagnosable. However, the pain I am in is so severe. 7 months ago I ran two marathons two weeks apart and felt great. Now even rolling over at night wakes me with excruciating pain all night. When I wake I can't walk. My back, pelvis, ankles, feet, hands, knees are so weak and painful and stiff I can barely get around.

Where do I find info about this type of Crohn's flare in my joints so I can get my doctor to see what is going on in my body?

Thank you!
Suzanne

Click to expand...

I feel your pain. same story here. How r u now?

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.
https://www.rheumatology.org/Practi...itions/Spondylarthritis_(Spondylarthropathy)/

http://www.medscape.com/viewarticle/776097
Good luck

tea_angie said:

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.

Click to expand...

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 dosage.....so 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.

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 scholar.google.com 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
http://www.plosone.org/article/info%...l.pone.0039841