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04-21-2015, 07:10 PM   #91
my little penguin
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DS had mild joint /muscle pain prior to humira
Was considered arthralgia /myalgia at the time .
Same thing while on humira but got worse.
After a year on humira he was dx arthritis
So it is very possible
He needed Mtx added to the humira to take care of the arthritis
Recently he had to hold the humira/Mtx due to an infection.
Of course his arthritis flared first ( it's easier to "see" ) than the crohns side of things .
Get to a Rheumotologist
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04-22-2015, 03:02 PM   #92
jwilgo
 
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Thanks so much for the information, I have an appointment with a rheumatologist tomorrow...desperate for some relief!
05-21-2015, 08:33 AM   #93
Adr321
 
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I experience the same thing. It is debilitating sometimes. I am a massage therapist and there are times where my hands ache for bad that I have a hard time working. My feet get really bad too. I ache all the time. I am unsure of what to do about this. Has anyone found relief with anything?
05-21-2015, 06:19 PM   #94
Tubes
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I've had crohn's since 94(it was misdiagnosed)and every visit to my GI she'd ask me if I had any joint pain and I never had any.Well in 2004 I had a total colectomy due to toxic megacolon and I had 3 surgeries and Finnally a J-pouch after the 3rd surgery I started getting knee pain it was manageable,but about 13 months later the J-pouch burst and I was back with an illeostomy and the knee pain got much worse,over the last 10 years it's spread to my ankles,toes,wrists and fingers as well it's pretty unbearable...Yay 1st post!!!
05-24-2015, 08:11 PM   #95
jwilgo
 
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Am seeing a rheumatologist who has ordered tons of lab work, positive ANA, borderline for Lupus...still waitIng for other lab results. The doctor put me on a low dose of prednisone, 10 MG am and pm but it has not helped. She also prescribed Vicodin to help with the pain, but it really does not touch the pain much but at least it allows me to sleep at night. She is waiting on the last of the blood work and is leaning to rheumatoid arthritis, even though Humira is the go to drug for rheumatoid arthritis....so many 'catch 22's' with immune diseases! I am unable to work and have had to move my bedroom to the first floor of my house as navigating stairs Is too excrutiating. Today my right hand and forearm are so swollen I look like Popeye! Hoping everyone is able to hang in there and find answers and relief..... my best to you all!
05-30-2015, 07:00 PM   #96
samman
 
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I had pain in my back first and that was my first clue of crohns. It is followed by a flare. The first time I just thought it was my back and took ibuprofen. Flare went away (did not know it was crohns then). Four years later I got the same thing this time I went to GI after Duodenum and Colon showed crohns. This time I had knee and ankle pain and stiffness I could not walk at all even with braces. My CRP and SED rate and the joint pain correlated and when the numbers went down with prednisone treatment my ankles, knee, and back all went to normal. For me it correlates to flares directly. You also know if you have one joint and not the other side hurting.
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Diagnosed:1/2015 but had flare 4 years earlier without knowing it could be Crohns
Currently: 6MP, Protonix
Previously Took: Lialda, Prednisone
Areas: Stomach, Duodenum, Colon
05-30-2015, 07:39 PM   #97
Mr chicken
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Arthritis with crohns is common
It typically fkares with GI flares
It is known as spondyloarthritis

http://www.spondylitis.org/about/ibd.aspx
05-30-2015, 10:18 PM   #98
RNGirl
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I have had horrible joint and muscle pain associated with my crohns. I was diagnosed with fructose malabsorption a few months ago. If I don't watch what I eat and limit my fructose intake, I have days of horrible joint/muscle pain. For me, it appears my extra intestinal issues are related to my inability to metabolize fructose and fructans. Made sense for me since I have terminal ileum crohns and that's where you would absorb the fructose. Everyone is different, but if you are really struggling, the cure for your joint pain could be right beneath your nose. It doesn't hurt to do a little research and cut out fructose and fructans for a few weeks and see if you get some relief.
06-01-2015, 07:57 AM   #99
DEmberton
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I have had horrible joint and muscle pain associated with my crohns. I was diagnosed with fructose malabsorption a few months ago. If I don't watch what I eat and limit my fructose intake, I have days of horrible joint/muscle pain. For me, it appears my extra intestinal issues are related to my inability to metabolize fructose and fructans. Made sense for me since I have terminal ileum crohns and that's where you would absorb the fructose. Everyone is different, but if you are really struggling, the cure for your joint pain could be right beneath your nose. It doesn't hurt to do a little research and cut out fructose and fructans for a few weeks and see if you get some relief.
Are you saying you should eat more fructose or less?
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06-01-2015, 08:06 AM   #100
DEmberton
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The join pain has crept up on me. I think I've probably had issues for years, but it's been much more consistent the last 6 months or so. I'm finding I mostly have stiffness all over, but not that much pain - does that still count as spondylitis? (I thought that was specifically to do with the back).

More worryingly my hands and lower legs sometimes feel numb, but not actually numb (i.e. no loss of feeling); it's just a vague sensation. The numbness seems to come after the pain, i.e. if I rest then the pain returns; if I use my hands or walk then it can feel numb again.
06-01-2015, 01:25 PM   #101
samman
 
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I'm no expert on this but it may be a vitamin b12 deficiency. Vitamin b12 is absorbed in the small intestines and needs gut bacteria to be properly absorbed. I can vaguely remember reading this so don't take my word for it but you can definitely know what the symptoms are from:

http://www.health.harvard.edu/blog/v...l-201301105780

If deficient for a long time you can start to get nerve issues in limbs. Like I said I know very little about this but its better for me to say something than nothing at all. I got this on CCFA website for you:


Again, that depends on the extent and location of the disease. Vitamin B-12 is absorbed in the lower ileum—that means that people who have ileitis (Crohn's disease that affects the ileum) or those who have undergone small bowel surgery may have a vitamin B-12 deficiency because they are unable to absorb enough of this vitamin from their diet or from oral supplements. To correct this deficiency—which can be determined by measuring the amount of this vitamin in the blood—a monthly intramuscular injection of vitamin B-12 may be required.

Folic acid (another B vitamin) deficiency is also quite common in patients who are on the drug sulfasalazine. For these patients, the recommended dietary allowance for a folate tablet is 1 mg daily, as a supplement. For most people with chronic IBD, it is worthwhile to take a multivitamin preparation regularly. If you suffer from maldigestion or have undergone intestinal surgery, other vitamins-particularly vitamin D-may be required. Affecting as many as 68 percent of people, vitamin D deficiency is one of the most common nutritional deficiencies seen in association with Crohn's disease. Vitamin D is essential for good bone formation and for the metabolism of calcium.
06-01-2015, 09:26 PM   #102
RNGirl
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DEmberton,

I eat LESS fructose and fructans and feel better.
06-02-2015, 09:45 PM   #103
Mr chicken
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Spondyloarthritis tends to flare arthritis when the gut is also flaring
So in theory if fructise etc irratated the gut causes mild inflammation
Reducing that inflammation would stop the arthritis flare

DS didnt get that memo and his arthritis fkares are independant of gut flares
02-04-2016, 06:18 PM   #104
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I know this is an old thread but it was amazing for me to read today. I've had back pain on and off for the past few years. Diagnosed with degenerative disc disease, had physical therapy, had epidural steroid injections, taken painkillers, etc. My doc at the pain management clinic referred me to a rheumatologist last month as she said with my various auto-immune issues (Crohn's, Thyroid Cancer and subsequent thyroid antibodies popping up after surgery/treatment, and chronic idiopathic hives, etc). I had my first appointment today and they took about 12 vials of blood. The rheumatologist mentioned that back pain can be caused by arthritis and inflammation of the joints. She also sent me for an x-ray of my S-1 and/or sacroiliac joint. I feel like I learn something new everyday about Crohns - the gift that keeps on giving!

She mentioned using biologics to help with both the Crohn's and inflammation but said they really aren't a good option for me at the moment as I'd need to be 5 years cancer free before she'd consider them. She mentioned the side effects of how those drugs weaken immune system and could cause other cancers. That of course scared the hell out of me. It seems to be off the table for now. She said depending on lab results we will see what we can do.
02-06-2016, 12:42 AM   #105
RNGirl
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Hi Cheryl888, I wish you well, I'm sorry you have been through so much. Hope things settle down for you soon. I know we are all different, but it really did help me to watch what I eat. I eat almost no fruit, very occassional fresh pineapple and cantaloupe. Organic vegetables and whole foods diet, no processed foods etc. I limit the chemicals I use on my body and use argon oil on my face and body. It seems to be helping at the moment. My joints and all around inflammation seems better too. I hope you find the right recipe to help you heal. I am biding time until I have to start meds. Take care and best of luck to you!
10-10-2016, 12:50 AM   #106
Joe8131
 
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Never had joint pain (besides the usual) until about a month ago. Random joints were hurting and would change daily, sometimes I couldn't drive or walk up stairs or even get undressed without horrible pain. Stayed mostly in my shoulders, knees, wrists, sometimes fingers or toes. Didn't think it had any relation to crohn's until a few days after I received Remicade. I had gone about 3 months without getting any due to a move and change in doctors. Usually I have stomach pains if I go without Remicade but didn't have that, don't know what was worse. Have an appointment with my GI doc next week so I will bring this up now that I know there is a connection. Any other pain meds didn't work, just thought something else was wrong lol. At least now maybe I can get a diagnosis on it because no other doc had a clue what it could be.
10-15-2016, 07:58 AM   #107
Dackelmann
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Been on Infleximab for nearly two years, always had a little in the way of sore joints and aches where I've broken bones- especially in big weather changes, hot to cold or tother way round. Always thought by the way my fingers are crooked and the pain- it was arthritis. Anyways as part of my govt' sponsored health care plan I had arthritis checks. Zip. The specialist reckons it is from overuse of body parts from a life of labouring. My doctor raises an eyebrow at the diagnosis.
The last few months, the long dull pain in my feet, knees, and now hips is slowing me up considerably. Seems a little different- so could be side-effects from the Inflexi. I'm left scratching my head- and rubbing my knees and running hot baths. But it's way, way better than having the bleeding, etc.
10-18-2016, 02:22 PM   #108
EmmaLou
 
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I've always had a little soreness in my joints, but in the last few weeks it's gone from barely noticeable to being in tears climbing the stairs and dread having to stand up. Am due my third dose of Humira on Monday so hoping that helps! Does anyone have experience of Humira's effect on joint pain?
01-30-2017, 07:17 AM   #109
ElizabethLedoux
 
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Thanks guys!
For sharing your experiences!
02-06-2017, 01:13 AM   #110
RNGirl
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Hi, just curious---have you tried cutting out nightshade vegetables? They are: tomatoes, potatoes, eggplant & peppers. I was having horrible joint pain in my shoulders, so bad it was hard to get dressed. Potatoes are the worst for me, tomatoes I tolerate in moderate amounts and don't do peppers or eggplant. Try removing them for a bit and see if it helps your joint pain. Take care.
04-23-2017, 09:53 AM   #111
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My knees and ankles got really bad when I was an inpatient. I actually couldn't walk at all for a couple of days. I was on IV paracetemol, codine and morphine to cover up the pain, which was like having bolts screwed through my joints.

Since getting IV Hydrocortisone, following on with Prednisolone and now Humira, my joints have plagued me less. First of all I was just sore in the morning, but could walk it off. Now it's more like a lethargic dull feeling in the background. Barely noticeable.

I am concerned though as, once I lose the bag, I want to start running/ swimming and skateboarding again for some much needed exercise. At the minute I'm not sure I'll be able to achieve much of any of that.

Last edited by Dapper_Dan; 04-23-2017 at 04:04 PM.
04-23-2017, 03:49 PM   #112
ronroush7
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My knees and ankles got really bad when I was an inpatient. I actually couldn't walk at all for a couple of days. I was on IV paracetemol, codine and morphine to cover up the pain, which was like having bolts screwed through my joints.

Since getting IV Hydrocortisone, following on with Prednisolone and now Humira, my joints have plagued me less. First of all I was just sore in the morning, but could walk it off, now it's more like a lethargic dull feeling in the background. Barely noticeable.

I am concerned though as, once I loose the bag, I want to start running/ swimming and skateboarding again for some much need exercise. At the minute I'm not sure I'll be able to achieve much of any of that.
Wishing you the best.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
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