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01-22-2012, 06:12 PM   #1
tea_angie
 
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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.
01-22-2012, 06:50 PM   #2
ekay03
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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.
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01-22-2012, 07:44 PM   #3
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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.....
01-22-2012, 08:31 PM   #4
tea_angie
 
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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
01-23-2012, 08:38 PM   #5
Gue33
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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.
01-23-2012, 10:27 PM   #6
tea_angie
 
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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.
01-25-2012, 12:36 AM   #7
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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...
01-25-2012, 07:41 AM   #8
ekay03
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I just want to share w/ everybody what I take for my crohns related arthritis. I take Cymbalta http://www.cymbalta.com/Pages/managi...arthritis.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
01-25-2012, 07:55 AM   #9
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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!!)
01-25-2012, 03:37 PM   #10
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Never had the MRI, so let us know how that goes. Have fun with the colonoscopy, especially the prep... Hope it shows that you don't have inflammation. Be well!
01-25-2012, 03:59 PM   #11
Bernie1986
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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
01-25-2012, 09:44 PM   #12
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try DMSO it works, its cheap Google: DMSO BZ for all information I am amazed!!!! its the sure all, cure all I aint lyin
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01-25-2012, 11:32 PM   #13
Sage
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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!
01-26-2012, 05:49 AM   #14
Bernie1986
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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
01-26-2012, 06:53 AM   #15
ekay03
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I just remembered something else that helps me w/the joint pain. light stretching exercises daily!
01-27-2012, 08:59 PM   #16
vanilla_chai
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Well going for a colonoscopy tomorrow and then a MRI of my intestines (anyone ever have that before?)
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)
01-27-2012, 09:07 PM   #17
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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.
01-27-2012, 09:14 PM   #18
indianhart
 
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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?
01-27-2012, 11:17 PM   #19
vanilla_chai
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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
01-28-2012, 07:34 AM   #20
indianhart
 
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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! 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! Hope you have a pain free day!
01-28-2012, 09:03 AM   #21
vanilla_chai
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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.
01-28-2012, 09:19 AM   #22
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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.
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01-28-2012, 11:15 PM   #23
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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.
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03-11-2012, 09:28 PM   #24
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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.

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.
05-27-2013, 10:06 PM   #25
suschex
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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...
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
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05-28-2013, 08:20 PM   #26
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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.

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. 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.
05-29-2013, 06:17 AM   #27
KayleighMeek
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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
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05-29-2013, 07:44 PM   #28
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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)

Best wishes on Cimzia!!!
05-29-2013, 08:16 PM   #29
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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.
07-27-2014, 10:13 PM   #30
Jajabinks
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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
I feel your pain. same story here. How r u now?
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