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09-02-2013, 02:57 PM   #31
Vonnie
 
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I have crohns and have been on humira for over 3 months. I have always had some type of joint pain through the years and before being diagnosed last year, I had terrible problems with swollen achilles tendons. I just woke up one day and one foot was huge and it hurt like crazy. Prednisone fixed that. Then a few months later, the other foot. Same thing. A few months later, my knee. Same thing; prednisone made it better. Have had a bowel resection since those times and I still hurt in my knees, lower back, hands, feet, ankles. GI doc wants me to go to a rheumatologist and I have put off doing that. I hate having to take more medicine but if I sit for longer than a few minutes at a time, I am so stiff that it is hard to get up and move. Some days are better than others.
09-09-2013, 08:29 AM   #32
Kaevata
 
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I am hobbling into clinic later this afternoon and I want talk to the Dr about back pain and hip pain that I am getting.
I suspect sacroiliitis which is a feature of Crohn's along with many other conditions. Shooting pains on waking and getting up are the worst but they get better as the day goes on. The hip just aches and moans all the time and I was told two years ago that I have osteopenia in that very hip.
I will see what he has to say.
09-12-2013, 11:14 PM   #33
nogutsnoglory
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Is anyone else having full body pains from crohns arthritis. Mine is not limited to select joints, its all of them. I am told this will dissipate once my inflammation goes down.
09-13-2013, 01:07 PM   #34
bozzylozzy
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I have not been diagnosed with IBD (long story)
But I have been diagnosed with seronegative inflammatory arthritis. Mainly affects my knees, feet and hips

I dont have big red, swollen joints.. they look completely normal.. except my physio says he could feel swelling. Also.. when it is bad, even just a stroke of fabric across my knees, hurts so much!

I am on sulfasalazine for this and it works a treat (also had a steroid injection into my left knee which was fab!)
This all began when I had my first ever flare 2yrs ago.. I would have to walk sideways down the stairs like a crab and would be in tears due to the pain just sitting as a passenger in the car
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Grumbling Appendix removed OCT'11
Chiari Malformation diagnosed JUNE'12 (surgery 5th July)

Alternating diagnosis of:
Seronegative Inflammatory Arthritis / SAPHO syndrome

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Vitamin B12 injections
Sulfasalazine
(Previously Prednisolone.. worked a treat!)

Watch out.. there's a blonde about!
09-17-2013, 01:09 PM   #35
ce1210
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I am pretty sure I have some kind of arthritis, my GP tested me for RF last week and it came back negative, but my father has been diagnosed with RF and tested negative 3 times over 10 years then got a new doc and was retested and it showed positive. She described my symptoms as asymmetric polyarthritis because all my painful joints seem to be on the left side(neck, back, shoulder, hip, knee) but both my elbows and hands get stiff and pop a lot. I was having all of these issues before being diagnosed with crohn's but docs pretty much just told me to take NSAIDs and to try stretching/heat and ice none of which ever worked. In the past doctors always treated me like I was a junky trying to score any time I complained about pain, but since being diagnosed with crohn's, all of a sudden docs seem very interested in whats causing my constant nagging pains.
The worst of my pains are in my left neck/shoulder and in my left hip/groin area...the hip and groin area are a constant ache that makes it way up to my rib cage and my shoulder is a constant stabbing/burning pain that seems to feel better if I poke around my scapula pushing pretty hard on whats underneath there and my neck feels like a pinch when I turn my head to the left and a pull when I turn it to the right.
12-03-2013, 07:47 PM   #36
Jhsmith1167
 
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I have had crohns for at least 10 years. I have had 3 bowel resections, plus battles with fistulas. I have been on Remicade for years and I am currently taking Methotrexate also.I have recently in the last six months been experiencing joint pain. But, as of late I have severe swelling of my hands, wrists, and feet. I have pain in my knees particularly when I get up in the morning. It moves around from finger to finger, and wrist to wrist. Currently I have swelling in my fingers in my left hand. My right wrist is so swollen I cannot wear a watch, both my feet are swollen on the bottom.My GI is sending me to an arthritis DR. but I'm not sure if it is arthritis. Any suggestion?
01-16-2014, 09:14 PM   #37
Sparkle2012
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So some people have it after starting Remicade - guess I better not have that then! And others smell of Salt Pork And Ham. But I'm obviously far from alone with this.

I started the thread because I saw a Rheumatologist on Friday. Now, he said it wasn't rheumatoid arthritis as he could not find any evidence.
He utterly dismissed my thinking it was an arthritis, with a had-wavy 'its soft tissue'. Which was really less than helpful.
Although this is an old post, I saw my rheumy today and he saw no evidence of arthritis in my hand xray or in blood tests and offered me Tramadol for the pain, which is not that bad really. He also said that glucosimine can be used but there is no proof after studies that it works. Then as an afterthought, he was reminded that I have Crohns and said it's probably Crohns arthritis and it's not disfiguring. And offered to stick some synovisc in my knees which I need to research. I also felt it was a quick dismissal and someone said he didn't check 2 of the most common Crohns arthritis markers sedimention rate and protein C-reactive. Now what? I guess I go back and ask why along with my 3 sticks of synovisc that are supposed to be kind of hurty. Any luck on your side?
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Chronic Stomach pain, Gerd, Anemia. Rosacea, Migraines, Skin Issues
Longterm Prilosec/Antibiotics
Chronic C&D, blockages
Doc:"chubby=not Crohns"
GI #1: Pillcam, DX Crohns Humira ordered
GI#2: NOT Crohns; cancel Humira. pillcam stuck X6 wks! RX Entacort!
11/2012 ER SM bowel stricture resection/GB
GI#3: End Entacort. RX Pentasa! Flu symptoms. joint pain follow-neg RA
4/2013 Prometheus Positive/Crohns
Markers flat post surgery
Chronic Arthritis
No Crohns symptoms
On Pentasa
01-17-2014, 07:09 PM   #38
Jhsmith1167
 
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I have seen a Rheumatologist and after ex-ray and blood work, not much info. Other than my ANA inhibitor reading in my blood work was extremely high. Which is my auto immunity. The Rheumatologist suggests I may be having a reaction to the Remicade. I have been on Remicade for years. My GI is on board with the arthritis Dr and they are trying to come up with a fix. Meanwhile my hands are swelling like balloons, I cannot wear my wedding ring or even a watch. The pain is indescribable. They gave me Norcal. When I go to bed at night is tough, my elbows & knees ache also. What suck is my crohns is finally in remission, and now I have to deal with this.
01-17-2014, 07:28 PM   #39
Sparkle2012
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That's reallly discouraging to hear. It's almost like the Immune System is determined to attack something, if not the gastro...on to the joints. I'm really sorry to hear... I hope they can get it under control soon. Could be time to move on from Remicade. Seems like these drugs don't work forever and you have to play musical drugs from the feedback on this forum.
01-18-2014, 10:18 PM   #40
lizbeth
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I've had joint pains for 15 years, starting when I was 30. First it was my right hip and SI joint and I was dxd with sacroiilitis. Since then I've gone on to have pain in my hands, shoulders (had surgery for impingement syndrome and being investigated for other shoulder now), neck, hips, SI joints and knees. I've been dxd with polyarthralgia and a rheumy said it's not related to my Crohns which was dxd 15 months ago, though I know when my tum is bad my joints get worse. It's hard getting out of bed cos my spine is so sore. When I sit for even for a short time it's incredibly painful to stand and stairs are a nightmare, you can imagine getting to an upstairs loo in a hurry is tricky lol.Recently I've had a new pain in my knees were if I change direction of where I'm walking I will get an excruciating pain along with a loud crunch and am not able to put any weight on that leg for a few minutes......I've no idea what's going on with my body but I don't think it looks me very much lol.
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01-19-2014, 11:22 AM   #41
Sparkle2012
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Lizbeth....my doctor has been talking to me about Synvisc injections. Sounds like your knee cartilage is shot. I'm looking into it before I agree to injections but it will buy you 6 months of knee cartilage. Have you heard of it? I've been diagnosed with "non rheumatoid arthritis" however; he thinks it might be Crohns arthritis or Osteo. I have been diagnosed with osteo arthritis in my knee by an orthopedic doctor. My hands ache all the time and other than an old injury in knee and ankle, the hands are the worst. I will probably opt for the Synvisc injections if my insurance will pay.
01-21-2014, 01:59 PM   #42
lizbeth
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Lizbeth....my doctor has been talking to me about Synvisc injections. Sounds like your knee cartilage is shot. I'm looking into it before I agree to injections but it will buy you 6 months of knee cartilage. Have you heard of it? I've been diagnosed with "non rheumatoid arthritis" however; he thinks it might be Crohns arthritis or Osteo. I have been diagnosed with osteo arthritis in my knee by an orthopedic doctor. My hands ache all the time and other than an old injury in knee and ankle, the hands are the worst. I will probably opt for the Synvisc injections if my insurance will pay.
I hadn't heard of these but would consider them myself with some more research, very interesting. My gp has suggested it's a cartilage problem and I will have it checked out shortly, well end of next month which is shortly with the nhs ).
01-21-2014, 05:20 PM   #43
Sparkle2012
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Doesn't seem to be much in the way of side effects unless you are allergic to chickens and chicken products. The cartilage is taken from the "cone" of the chicken....as it is very similar to our existing cartilate. Other than that, it will give you 6 months of cartilage and then will go back to normal until you have another injection. I'm still researching but I can find no bad rap on this product.
01-23-2014, 05:43 PM   #44
lizbeth
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I would definitely have a look into the treatment, though not sure if it's available here? Have you heard of your insurance will pay yet?
01-23-2014, 05:48 PM   #45
Sparkle2012
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I would definitely have a look into the treatment, though not sure if it's available here? Have you heard of your insurance will pay yet?
The VP of nursing in a hospital here has been have those injections in her knees for 6 years. That's good enough on my investigation because these hospital folks have the latest data on these things. My insurance has agreed to pay but I have military insurance...Tricare. Im not sure if other insurance companies are paying. You should inquire if your insurance covers. I would be interested in knowing to share with anyone else on the forum from the UK who might benefit.
01-23-2014, 06:16 PM   #46
lizbeth
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I rely on the good old NHS so don't need insurance like you would although quite often I wish I did have insurance. However as I haven't been seen by anyone other than my gp I don't know what will happen or even if it's available here but I will keep you posted.
01-23-2014, 06:39 PM   #47
strawberrys78
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I don't know if it's arthritis, but I always assumed it's from Crohn's. I'm only 20 and my knees and upper back where it bends always hurts. My knees and back always feels super stiff, if I sit down for a couple of minutes I feel like I need to move around, and my joints also crack a lot. I can't ever get comfortable with my back! It sucks.
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Diagnosed with Crohn's Disease May 2013 after a 2 yr battle. Colonoscopy Dec 2012/MRI Apr 2013. Partial Obstruction discovered Jan 2014, 6 day hospital stay. 30 CM of small/a couple of inches of large intestine removed in laparascopic surgery Sept 10/14 due to not responding to medication.

Currently taking:
Remicade

Previously taken:
Asacol
Pentasa (hair loss)
Cipro (allergy)
Morphine
Flagyl
Imuran (Reaction)
Prednisone
Ranitidine
Atasol 30
Tramacet
Toradol
01-23-2014, 07:05 PM   #48
Sparkle2012
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That sounds like arthritis....best to keep moving and get you some yoga CDs --- that stretching is underrated. Awesome stuff. keeps you feeling good.
02-12-2014, 05:24 AM   #49
Tryagain
 
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Hii came across this post when looking for help with joint problems after surgery. I noticed both anglemitch and hbrekkas both described having sore joints especially fingers and hands in the first few months after surgery, and this is what is happening with me too. I would really like to know how you both managed these problems and whether you have found relief from them. Many thanks. TRyagain .
03-06-2014, 02:47 PM   #50
chicky402
 
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hi. I also get a lot of joint pain, especially in my hips. Its so scary how cd can do that. I read a while ago (on a different blogging site) that a lot of people got arthritis after taking Humira.
03-06-2014, 03:26 PM   #51
Sparkle2012
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I think the entacort after surgery...or perhaps the pentasa...brought it on. I know they say that it's part of the Crohns deal.....but I think it's part of the medicine deal. My Doctor told me that those on Humira loved it because "no more joint pain." I am not on Humira and have only used pentasa which I've heard is known for arthritis issues. I had hand xrays recently...results were "no signs of arthritis." My hands ache every day. Went to a rheum doc and he said "could be Crohns arthritis" and I can give you a script for Tramadol...that was the end of it. I don't take it though. It's aggravating, not that painful. I wake up with "trigger finger" in the morning....my pinky and ring finger both hands. Within a few minutes, it's resolved. So I bought a wrist splint because I sleep in a fetal way with my hands. I think that has helped the trigger finger today. Knuckles continue to be achy and hold some water retention at the base. Doctor hinted at carpal tunnel so this should help both.
03-06-2014, 04:18 PM   #52
Sparkle2012
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Yes, arthritis can be one of the "offshoots" of Crohn's disease. I put that in parenthesis because it's not a symptom, but there is a word for it (maybe "side effect" would be better?) Everyone is probably different, but mine comes and goes with my flareups. I mainly get just achy in the hands a lot, but when it gets worse, it can go to several if not all my joints, sometimes in the left and right knees and elbow and wrist. It's hard to explain, but it travels around my body at random. Yesterday was weird because I woke up and it was really bad on the right side of my jaw. I had the hardest time trying to chew my food!
Make sure you aren't a "teeth grinder" - that could give you TMJ in that jaw and it's painful to chew. I know what you mean about the prednisone. I put on about 30 from Entacort and it's not coming off!!!! It doesn't help that after surgery I can now eat without pain.
03-06-2014, 09:10 PM   #53
Essieluv
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I was just recently diagnosed with Crohn's arthritis, and have started sulfasalazine. I guess I'm joining y'all.
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03-07-2014, 07:22 AM   #54
Sparkle2012
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Essieluv: how are you doing on the sulfasalazine? You do not have Rheumatoid Arthritis right? Is your arthritis in your hands?

Lizbeth: I have had Synvisc knee injections in right knee and am on my 2nd left knee injection (2 of 3). It has helped for comfort and swelling a great deal. The shots aren't really painful - it's quick and you just have to avoid anything strenuous for 2 days. No exercise until one week after they are all done. (oh darn! I will start a walking regime in 2 weeks to try to get off the steroid fat I gained a year ago after surgery. It seems my appetite has also increased since eating without pain. haha I was told losing 5 lbs is like losing 40 on the knees. They are looking at the possibility of Synvisc injections into other areas of the body I read recently.
03-07-2014, 08:40 AM   #55
chicky402
 
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Ugg this is so scary reading about everyone's experience with medications. I see my GI doc (for the first time since being diagnosed after surgery) on Tuesday and I am so nervous about the meds being offered. I am trying to do research but I think these blogs help a lot more. :-)
03-07-2014, 08:53 AM   #56
dave13
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Ugg this is so scary reading about everyone's experience with medications. I see my GI doc (for the first time since being diagnosed after surgery) on Tuesday and I am so nervous about the meds being offered. I am trying to do research but I think these blogs help a lot more. :-)
I recently saw my GI for the first time after surgery.He wants me on pentasa.I'm not pleased it may aggravate my arthritis.I'll trade no stricturing for aggravated arthritis.If it helps me,that is.Some days I get overwhelmed and confused so easily dealing with my new normal. Look forward to more on this thread.
03-08-2014, 04:48 AM   #57
lente
 
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I started having joint pains when I was lowering the prednisone dose after being diagnosed. At first the GI thought that the pain was caused by the lowering of the prednisone, but after 2 weeks I had so much pain and stiffness in every joint that I could hardly move or eat.

I was sent to the rheumatologist, and this doctor really knew what he was doing. He didn't put me trough al lot of useless tests, just tried to move my joints, asked which movements hurt the most and said: you have crohn related arthritis. According to him it is typical for crohn's related RA that pain medications such as tramadol and nsaid's do not work.

He started me on depo-medrol injections, what a wonderful stuff! It took about 2 weeks, but then I started feeling better each day, and after 3 weeks I was completely pain free. Got the second injection after a month, since the third one I can call whenever my joints start hurting. The time between the injections is getting longer each time, last injection I needed after 5 months!
And from the depo-medrol I have no side effects, absolutely none...

I hope that some of you can be helped with this stuff the same way I was. Don't know of depo-medrol has a different name in other countries, but I have been reading different stories on this forum, and so far no one said anything about depo-medrol.
03-08-2014, 06:54 AM   #58
dave13
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Glad to hear depo-medrol is helping you,lente.It would be simpler if meds had consistent names,no matter where there marketed.We shouldn't be as familiar with different types of meds like a pharmacist,too much.I won't rant about meds...glad your doing well,lente.
03-12-2014, 07:52 PM   #59
pink&green
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Hubby went to see PCP today about his joint pain, breathing and side effects of Remi. Dr didn't like what he heard so he sent hubby over for chest x- rays he also requested lab work for his arthritis. Hubby has elbow, shoulder, and wrist pain he also had knee surgery in 2012 there was lots of arthritis in the knee.
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Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
03-12-2014, 07:58 PM   #60
Essieluv
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My arthritis in my back has been so bad today. Pain is at a 9 when I try to move or walk, hopefully some percocet will help. I really want to avoid the ER...
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