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10-12-2013, 07:29 AM   #61
Jison0612
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So I'm gonna try the Tylenol arthritis Forsure but what can I do about sleep? It seems like my shoulder neck and back pain keep me up at night what can I take otc at night to aid in sleep and joint pains
10-12-2013, 10:15 AM   #62
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For sleep you can try one of the sleep aids or melatonin.
12-07-2013, 01:14 AM   #63
Sparkle2012
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Boy, this thread hits home with me. Supposedly Crohn's and pain go hand in hand. I recently went to a rheumatologist to be tested for RA. Still waiting for the bloodwork to come back, & they've also scheduled an ultrasound on my hand. My rheumatologist said that even if it isn't RA, many Crohn's patients have something called "reactive" arthritis. With our autoimmune systems screwed up in the first place, some degree of joint pain & arthritis is probably to be expected.

My issues are compounded by the fact that I had a very messed up back before I was diagnosed with Crohn's. I've got 8 - yes, count them, 8 - herniated disks in my back & neck. So I have probably been on just about every pain medication that can be prescribed. Someone mentioned Neurontin...that's a pretty good medication in my opinion. I'm on 400mg three times a day. I also take 200mg of Celebrex daily. And percocet when needed.
HI! I had bowel block surgery a year ago and DX with Crohns although no symptoms now. However, I woke up one day after a series of Entacort for 3 months and hurt all over like a bad flu. The joint pain has never gone away and it is mostly in my hands and ankles. I'm being tested by a rheum and he's xraying my hands. Everyone wants to put me on Humira and seriously, I'm weighing out the disfigurement from the RA vs the side effects. I am trying to find more people who have been on Humira long term but the group is just a bunch of people either asking about it or complaining about the pain of the shots. I want to know is it SAFE....and I'd love to hear if anyone is taking it. The doctor said an alternative for joint is sulfa something drug but he likes humira better. These doctors don't seem to have concerns about it. Why? Have you been taking it for your joints?
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Chronic Stomach pain, Gerd, Anemia. Rosacea, Migraines, Skin Issues
Longterm Prilosec/Antibiotics
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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
12-07-2013, 11:03 AM   #64
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Hi
I have had Crohns for 16 years and been on Humira for the last 3 years. I also have severe joint pain associated with my Crohns. It's not Rheumatoid Arthritis the doc calls it Crohns Arthritis as I get no swelling and it can appear in any joint on different days. The Humira is for the Crohns and seems to keep it under control but has no effect on the arthritis or the skin that peels from my hands and feet when I have a flare up, I don't have any side effects from it either and the pain from the injection is nothing more than a mild sting that lasts seconds. I hope that this reassures you about the injections a bit.


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12-07-2013, 11:10 AM   #65
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Hi sparkle2012:

I have been on humira for 5 months now. I had joint pain up until mid October. It was in the hips, wrists and ankles but did move around. It took quite a while for the Humira to work, had to have Mtx and a round of prednisone but I think the flare is under control. I don't seem to have had any side effects from the Humira, more from the Mtx and victoza. So no more joint pain. I'm back at the gym so life is getting back in order. I also had acupuncture so I think that helped with the joint pain as well. I find taking any meds scary but we have to out weight the risks vs the benefits and have a really positive attitude. I now feel good about being on Humira. I feel I have gotten my life back.
12-07-2013, 12:32 PM   #66
Sparkle2012
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Thanks guys - appreciate the positive reports. I don't even like to take headache medicine so it's a big leap for me to wrap my head around Humira. I wish you both the best of luck.
12-07-2013, 12:36 PM   #67
Sparkle2012
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I too am having extreme joint pain. I was told by my digestive specialist to take turmeric for joint pain and inflammation. I am going to give it a go and I will let you all know how it works for me.

Alicia
I am taking tumeric (circumin) - it helps me. I notice it when I do not take it.
12-07-2013, 12:37 PM   #68
Sparkle2012
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So I'm gonna try the Tylenol arthritis Forsure but what can I do about sleep? It seems like my shoulder neck and back pain keep me up at night what can I take otc at night to aid in sleep and joint pains
Can't hurt to try Curcumin (Turmeric). It helps my joints and others.
12-07-2013, 12:39 PM   #69
Sparkle2012
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I don't know if it is related but I have been struggling with chronic asthma for several months. Could this be a Crohn's enhanced issue? Before all this, it was only mild and occasional during the fall months. Could it be part of the autoimmune attack? My Crohns symptoms are gone but the arthritis and asthma have ramped up.
12-07-2013, 03:39 PM   #70
rrhood1
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I'm the same as Mozart. Had horrendous joint pain & stiffness all the time. Rheumatologist put me on Sulfasalazine. NO pain now for the first time in 5 years!!!
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Dx: Severe lumbar ruptured discs
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12-07-2013, 03:45 PM   #71
Sparkle2012
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That is the drug my rheum offered instead of Humira. Do you know if we develop immunity for that drug as they do with Humira? so happy you are feeling better.
12-07-2013, 05:12 PM   #72
rrhood1
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I couldn't take Humira because it caused so much joint pain so my GI put me on Remicade and Methotrexate. My gut has been good with these but the joint pain lingered. So my rheumatologist put me on the Sulfasalazine. I don't know if you can develop an immunity to it but right now, I'm just enjoying the freedom from the joint pain. I'm hoping not - I'd like this to work forever.
12-27-2013, 07:51 PM   #73
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I've had joint pain, mainly lower limbs which I was told was enteropathic arthritis directly linked to cd. My right knee became so swollen, I was admitted to hospital to have my knee drained and then had this followed up by a cortisone injection. I was prescribed naproxen but they gave me a gastric ulcer.

I get knee flare ups every now and then but I find that using ibuprofen gel topically and sparingly does the trick. Could be worth a try?? Failing that, comfrey oil works quite well but it's greasy and can smell quite bad depending on where you get it from.
12-29-2013, 02:11 PM   #74
Sparkle2012
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RATTY: The Rheumy thinks mine is enteropathic as well. My right knee is in a continual state of swell. Did you get relief from the cortisone injection? I don't believe I've seen ibuprophen gel here in the states. Sounds like you guys are a little ahead of us medically in some ways. I also heard that UK gives a pre-pillcam that dissolves to see if the actual pillcam will be able to get through without blockages. They aren't doing that here - at least not with my last 3 GIs.
12-29-2013, 04:24 PM   #75
Sparkle2012
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So I'm gonna try the Tylenol arthritis Forsure but what can I do about sleep? It seems like my shoulder neck and back pain keep me up at night what can I take otc at night to aid in sleep and joint pains
I'm no doctor but I've been taking Curcumin and it helps me a lot. When I don't take it, I feel worse. It has anti-inflammatory properties. It's derived from a spice so can't hurt to try and see. It's a little pricey but was worth it for me. I feel better joint-wise when I take it.
12-29-2013, 04:50 PM   #76
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RATTY: The Rheumy thinks mine is enteropathic as well. My right knee is in a continual state of swell. Did you get relief from the cortisone injection? I don't believe I've seen ibuprophen gel here in the states. Sounds like you guys are a little ahead of us medically in some ways. I also heard that UK gives a pre-pillcam that dissolves to see if the actual pillcam will be able to get through without blockages. They aren't doing that here - at least not with my last 3 GIs.
The cortisone injection worked brilliantly but I needed another a couple of years later. The ibuprofen gel is just from the pharmacy and isn't prescribed by a doctor but I don't think ibuprofen is a drug that is available in USA. Maybe a diclofenac based gel would work if you can take use bit. You still have to be careful with external use anti-inflammatories because either can still affect you.

In terms of the pillcam, I'm afraid I don't have enough experience to comment on that.
12-29-2013, 07:59 PM   #77
Sparkle2012
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We can get ibuprohen pills only here I believe. Never heard of that other one. Nice to know about that injection, I think I'm going to request it. Good thing you don't have pillcam experience; mine was stuck for 6 weeks, caused me a horrible weekend out of town and they were threatening surgery. People who have that done should use the pre-pillcam and avoid a needless surgery.
thanks for sharing!

PS: My husband just looked over my computer and said "that guy looks like your brother!" And I had thought so too! haha We are Dixon/Dickson descendants from the UK -- Scottish/English border folk. Have any of those folks in your family history?
12-30-2013, 05:31 AM   #78
Ratty
 
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We can get ibuprohen pills only here I believe. Never heard of that other one. Nice to know about that injection, I think I'm going to request it. Good thing you don't have pillcam experience; mine was stuck for 6 weeks, caused me a horrible weekend out of town and they were threatening surgery. People who have that done should use the pre-pillcam and avoid a needless surgery.
thanks for sharing!

PS: My husband just looked over my computer and said "that guy looks like your brother!" And I had thought so too! haha We are Dixon/Dickson descendants from the UK -- Scottish/English border folk. Have any of those folks in your family history?
Hope the cortisone fixes you up. I'm from between Liverpool and Manchester, no relatives in that area.
12-30-2013, 10:06 PM   #79
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For the last 6 months I've have chronic neck and chest pain. All started after 8 classed of hard core cross fit work out. Cardiac work up neg, MRI she herniations in c levels and t levels. Pain management doc says not that bad of a herniations. Have had crohns for over 25 years, been thru it all. Colonoscopy last shows no active disease. Blood work other then high iron level is good. On remicade 6mp and Prilosec. Aniexty making things worse. Pain is aching and burning sensations. Going to see rhumo next week...thoughts?
12-31-2013, 08:00 AM   #80
Sparkle2012
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Have you had an upper GI scope?
12-31-2013, 10:42 AM   #81
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Not since 2006
12-31-2013, 10:51 AM   #82
Dackelmann
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U/C and joint pain. You bet. Arthritic joints in fingers and knees hurt when flaring. Also two busted collarbones get that bad I can hardly move. An icepack on my backside and heat pads on my shoulders. Balls of feet sometimes ache and also worn out joints in the elbows. Consolation prize- the busted nose has remained a constant but much better to breathe after having rhinoplasty. Can't grumble too much, my father had pretty bad polio.
01-03-2014, 03:48 AM   #83
bozzylozzy
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Hi sparkle.. hopefully you can get some joint relief soon!
I dont have rheumatoid arthritis... but do have bad joint pain. I had steroid injection in my left knee and worked brilliantly!! And I have been on sulfasalazine ever since. The sulfasalazine works great.but I do know when I have missed a couple of doses and I get some breakthrough pain

Good luck!
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Grumbling Appendix removed OCT'11
Chiari Malformation diagnosed JUNE'12 (surgery 5th July)

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(Previously Prednisolone.. worked a treat!)

Watch out.. there's a blonde about!
01-03-2014, 07:39 AM   #84
Sparkle2012
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Hi Bozzy - thanks so much for addressing the joint thing. My Crohns symptoms are gone but this joint thing...ugh. Today is really bad because of this cold wave that started today. My hands stay slightly swollen. I'm still in testing phase. One of my bad doctors mentioned "if he were treating me" would give me a steroid injection. I may pursue that for my right knee. When they determine if this is Crohns related arthritis or RA they will propose a medicine I'm sure. My Rheum has already mentioned the sulfasalazine. Do you know if there are scary side effects like Humira?
01-03-2014, 07:40 AM   #85
Sparkle2012
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U/C and joint pain. You bet. Arthritic joints in fingers and knees hurt when flaring. Also two busted collarbones get that bad I can hardly move. An icepack on my backside and heat pads on my shoulders. Balls of feet sometimes ache and also worn out joints in the elbows. Consolation prize- the busted nose has remained a constant but much better to breathe after having rhinoplasty. Can't grumble too much, my father had pretty bad polio.
Mine in hands and knees also but today -- a cold snap --- it's in my back and neck. Happy happy joy joy.
01-03-2014, 07:41 AM   #86
Sparkle2012
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Not since 2006
Might ask for another scope. I'm surprised they haven't suggested for you.
11-30-2014, 02:00 PM   #87
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Arthralgias are a result of cytokine release such as IL-1, which also acts as Osteoclast Activating Factor. If you get lab results during a flare, look at your Alkaline Phosphatase and see if its slightly elevated. If you have no underlying liver pathology, it explains the lab finding due to high bone turnover due to the IL-1 secretion.
Hi you sound very knowledgeable, I am in the middle of a long, long flare and my hips are hurting so bad it is hard to walk, I am going to the doctor both my gi and regular, what should I ask for test and med wise any advice
11-30-2014, 04:14 PM   #88
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Hi
You should be asking for a test for Lupus. Ask to have your ANA checked CBC and Anti-dsDNA
12-01-2014, 12:01 AM   #89
my little penguin
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Ask for a Rheumotologist
Spondyloarthritis associated with Ibd can include the hips and tends to flare with crohns activity .
Rheumos are best to handle that as well as possible lupus
Good luck
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04-20-2015, 03:54 PM   #90
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I was diagnosed with Crohn's 20 years ago, have had 4 resections and have been on
Humira for the past 2 years, keeping me in remission (or at least with fewer issues than prior to doing the injections) Suddenly this past Friday night I was struck very suddenly with flu like symptoms. I crawled into bed only to wake up in the morning with excruciating joint pain in my hands, feet and shoulders. As I am on Humira, which is a major drug for treating arthritis I am perplexed. I am seeing my gastroenterologist in the am and hope to get some answers and some immedate pain relief as the pain is simply horrible. WONDERING IF ANYONE ELSE ON HUMIRA HAS DEVELOPED SUDDEN JOINT PAIN ?
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