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05-25-2016, 01:33 PM   #31
DEmberton
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I've never been diagnosed with arthritis, but over the years I'd get a lot of joint pain that I always put down to just being generally unfit and spending half my life in front of computer screens. When I was finally diagnosed with Crohns and read about the link to arthritis the penny dropped.

I noticed this as an 18 year old, and I remember mentioning it to a friend who then made fun of me calling me "Arthritis Man". That was about 5 years before the bowel issues started.

I'm currently on Budesonide for the second time (and Aza for 2 weeks) and actually have been doing quite well. I had a good week and a half of being pretty much normal, and then I noticed some ankle pain and sure enough the bowel symptoms followed. Then I got better again for another week or so, and today started to feel pain and stiffness and again some loose stools. I don't think in the past I ever had quite this correlation, but this time it certainly seems the two are locked together.
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20cm Terminal Ileum and Ileocaecal resection July 2014
125mg Azathioprine
05-25-2016, 01:44 PM   #32
Jomo73
 
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I have been on both of those meds and am actually allergic to Aziathioprine! I always did have the odd pain since diagnosis in 2005 but just put it down to my age .... As u do lol. When the pain actually got worse after my latest op Nov of last year I was sent to see a Rheumatologist who after asking symptoms came straight out and said "sounds like ankolosing spondylitis!!??!! As I've said in previous posts I had an MRI and a bone density scan and was finally diagnosed as having osteopina...part of the osteo arthritis family! Am currently on sufasalazine which is actually a drug used for rheumatoid arthritis,,2and a half months in and the pain ,if anything is getting worse instead of better...was only saying to my partner last night that I can't honestly remember the last time I slept all night long without waking up between 3 & 4 times a night,I spose having an illeostomy has something to do with that tho right!!!
05-26-2016, 03:36 AM   #33
Charlotte.
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Sounds a lot like mine currently. Have you seen a rheumatologist? The only “advantage“ that I see in having extrainstestinal symptoms is that you have another chance to monitor the effectiveness of medication by doing ultrasound of the joints. I thought my previous biologic would eventually be effective enough, but my joints proved me wrong. Elemental diet just lead to the fact that I felt quite okay Crohn's-wise, as I was not eating, but it did not help the inflammation in my body.
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
05-26-2016, 03:42 AM   #34
Charlotte.
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Is it certain that it's ankylosing or fusing already or is it “just“ inflammation? Do you know which part of the spine is affected?
My sacroiliac joints are inflamed, but not fusing, normal spondylitis though. Aza is not working in the spine btw, only MTX, Aza would only make sense along with a biological to slow down the process of developing antibodies against the biological.
Fingers crossed for sulfasalazine! Tried that for my Crohn's and arthritis as well some time ago.
I have osteopenia as well, it did not get worse during the last year, I just had several scans. And I'm quite sure that it does not have to do anything with steroids for me, I always was quite skinny as a teenager and my Crohn's was undiagnosed for such a long time, so I will definitely been lacking of many nutrients for a very long time. Now, that I see a nutritionist and also started eating dairy, fish and eggs again, I'm not worried at all, regarding my osteopenia.
10-23-2016, 01:26 AM   #35
MizzSarah
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I've had joint problems long before I was diagnosed with Crohn's. I went through rheumatology. Explained to them I started off experiencing severe joint pain in my left ankle. 😔 Eventually the pain started to affect all localized joints. Swelling.. strange rashes etc. They couldn't determine arthritis was a cause so they gave me the term idiopathic pain syndrome as the culprit. Couldn't rule out arthritis either but they couldn't explain why I was having those issues.

Fast forward 7 years and I was diagnosed with Crohn's. Guess mine started backwards.

I should make a follow up with a rheumatologist. Maybe they'll find the arthritis now and not give me such a bland reasoning😑 To a 14 year old kid being told it's idiopathic pain syndrome, I figured it was derived by the term 'idiot' that played with my mind for years. Even now I still have a hard time being told sorry we can't figure out what's wrong with you so here is a diagnosis just to ease you from thinking your crazy...


Sorry guys. Had to vent
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10-25-2016, 09:19 AM   #36
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Hello!

I developed sacroileitis with my last flare in July. They did surgery a week after I was admitted, and even though the back pain started with the flare on 26th July, the surgeon and his junior doctors were adamant that it was stiffness caused by four hours on my back during the operation on 1st August. Would love to know how that works!!! When my GI consultant came to see me he diagnosed the sacroileitis and said it should have been obvious given my diagnosis of Crohn's.

In September I started with stiffness and discomfort in my fingers which progressed to pain in my hands, wrists, elbows and shoulders. It's at its worst in my knees. Climbing stairs and getting up from sitting is very painful The answer seems to be lots of pain meds and hope the Humira works, but have now been told my white blood count is too low so likely being taken off the Humira.

Really feel for everyone dealing with this. The Crohn's is bad enough, without joint pain and associated restrictions to mobility.
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Crohn's diagnosed May 2016 after years of symptoms.

Prednisolone followed by Humira

Two emergency admissions in July leading to removal of TI and formation of Stoma August 2016

Arthritis made it's arrival September 2016

Budesonide added to Humira October 2016 and still waiting to find out if I can stay on Humira because of the number it keeps doing on my immune system.
01-31-2017, 08:34 AM   #37
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Hi everyone, I've come to ask for a it of advice 😊
I've been suffering with my joints more and more lately and was referred to a rheumatologist. She followed out some test and said that she cold feel swelling in some of my joints and sent a request for me to have a pelvis and spine MRI and an ultrasound on my hands. She said that if it came back showing that I had spinal inflammation she would want to change my vedolizumab to a tnf. I have already failed humira and don't particularly want to swap to remicade as I'm finally reaching the point where my infusion should start working and I don't want to be back at the beginning. I wanted to know if any of you take methotrexate and if you can have it as a combination with other meds like the vedolizumab. If I don't have spinal inflammation then she said she would add sulfasalazine- has/ does anyone take this? Does it work?
Thank you for reading,
Abby 😁
02-02-2017, 10:01 PM   #38
jonique
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Hi everyone, I've come to ask for a it of advice 😊
I've been suffering with my joints more and more lately and was referred to a rheumatologist. She followed out some test and said that she cold feel swelling in some of my joints and sent a request for me to have a pelvis and spine MRI and an ultrasound on my hands. She said that if it came back showing that I had spinal inflammation she would want to change my vedolizumab to a tnf. I have already failed humira and don't particularly want to swap to remicade as I'm finally reaching the point where my infusion should start working and I don't want to be back at the beginning. I wanted to know if any of you take methotrexate and if you can have it as a combination with other meds like the vedolizumab. If I don't have spinal inflammation then she said she would add sulfasalazine- has/ does anyone take this? Does it work?
Thank you for reading,
Abby 😁
I failed four tnf. I'm now on stelara and it works quite well for the inflammatory arthritis. Methotrexate gave me severe nausea and fatigue. Sulfasalaxine gave me severe nausea.
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Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stelara, Cimzia, Simponi, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016

Last edited by jonique; 02-02-2017 at 10:03 PM. Reason: Clarify
02-02-2017, 10:53 PM   #39
Maya142
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Hi everyone, I've come to ask for a it of advice 😊
I've been suffering with my joints more and more lately and was referred to a rheumatologist. She followed out some test and said that she cold feel swelling in some of my joints and sent a request for me to have a pelvis and spine MRI and an ultrasound on my hands. She said that if it came back showing that I had spinal inflammation she would want to change my vedolizumab to a tnf. I have already failed humira and don't particularly want to swap to remicade as I'm finally reaching the point where my infusion should start working and I don't want to be back at the beginning. I wanted to know if any of you take methotrexate and if you can have it as a combination with other meds like the vedolizumab. If I don't have spinal inflammation then she said she would add sulfasalazine- has/ does anyone take this? Does it work?
Thank you for reading,
Abby 😁
You can take MTX with Vedolizumab. However, Methotrexate does not work well for spinal inflammation, which is why she is recommending an anti-TNF if you do have spinal inflammation.

CCFA has a good fact sheet about the various kinds of arthritis associated with IBD:

http://www.ccfa.org/assets/pdfs/arth...plications.pdf

If you have spinal/sacroiliiac joint inflammation, that suggests that you have axial spondyloarthritis. Axial spondyloarthritis is a type of arthritis that affects the spine (and can affect other joints - such as knees, ankles, hands - any joint really).

Unlike peripheral arthritis, which flares when your IBD flares, it can flare independently of your IBD so it really does need to be treated. It can also cause permanent damage to your joints, which obviously you do not want. It can also progress to Ankylosing Spondylitis.

The only treatments for axial spondyloarthritis are NSAIDs (which aren't an option for most people with IBD) and anti-TNFs. There is some data suggesting that Stelara works too, but it's still in trials.

Remicade is typically the anti-TNF that works fastest. Even though you failed Humira, that doesn't mean you'll necessarily fail Remicade.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-05-2017, 12:25 PM   #40
Abbynormal
 
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Thanks for taking the time out to reply Jonique and Maya 😊
I go for an ultrasound on my hands in a couple of weeks. I'm still in a lot of pain and nothing seems to make it better. My hands and feet seem to be taking it in turns to swell and my joints just seem to constantly ache.
I know the tnf is the best option I just feel it's a step backwards as I feel the vedolizumab has finally started working but it doesn't offer any ease on my joints. I guess I will have to wait and see and hope that it's not spinal inflammation so that I don't have to switch my infusion
05-07-2017, 07:27 PM   #41
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hydroxychloroquine sulfate 200 mgs 1 tablet twice daily with food has been helping me so far control the aches and pains of prednisone withdrawal which was 4 months ago when i completely got off it. been on pred over 25 yrs. the colon came out recently and i no longer need the steroid.

hello, i just joined the grp for sharing and information. IBD and arthitis go hand in hand.. no one found the root of it but these drugs, cant be the total answer. I saw a commercial on t.v. about a pill for arthitis. they proposed pills "out there" treat the symptoms but dont cure the root. this drug they advertised treats the root of arthitis by nurishing the joint. interesting way to sell a product. comments?
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colitis in early 20's, 1980
crohns current 2016
remicade 5/16 @ 8 weeks
prednisone throughout life.
failed meds: asecol, flagyl
blood clots 5/16 IVF
P.E. 5/16
Glucoma 2014
esopheguael strictor
complete hearing loss1987
2016, xmas eve. ostomy, complete colon removal
05-09-2017, 06:16 PM   #42
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What's the name of the drug you saw advertised?
05-11-2017, 02:05 PM   #43
Barricade007
 
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Hello all, Thanks for this support group and am glad i am not the only one with the Arthritis problem as well. Some days the arthritis is worse then the Crohn's. Im new to this thread and am just looking for others experiance and knowledge when it comes to Crohn's and these other symptoms. I was diagnosed last year with Crohn's along with Arthritis in my back. My GI doc said they are linked. With the arthritis I have trouble sleeping throughout the night and am always have to be on my back. My wife has also told me that when I sleep i am breathing very shallow and at times gasp for air. I have not been diagnosed with sleep apnea, but am thinking that is what it is. I am currently on Budesonide 9mg a day, however does not really do anything for my back.

Anyone else share these symptoms and what they have done to help with them?

After reading this over it sounds like i am 85..... but am only 33...... ugh....

Thanks everyone!!
05-15-2017, 01:21 PM   #44
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Hello new to posting here 38 year old female. I have recently been diagnosed with the gene HLA-B27 responsible for the IBD and Spondyloarthropathy. I have always had stomach issues since a kid but nothing horrible until about 8 years ago when I turned 30 (maybe a year or two before that) I keep getting admitted to hospital with horrendous right side abdominal pain, I was in tears it hurt so bad couldn't eat could sit up horrible diarrhea and cramping and nausea. Symptoms have come and gone but they still basically remain. They diagnosed me with IBS-D because every test came back normal. I have been on Bentyl and Lomotil. Now 8 years later this year I have had two horrible flares again one last summer and one 2 months ago (follow but horrible hands and feet arthritis which I have never really noticed having before now) I was also diagnosed this time by stool sample with E. Coli 0157. I just don't think the Dr's are finding it despite the tests. Gallbladder and Liver are OK also. I am getting the PillCam next week though I demanded it as I heard Crohn's can hide in small intestine sometimes. My questions I guess for people are my gut feeling this whole time is its Crohn's and NOT IBS, have any of you on here waited years for them to find out you had Crohn's and diagnose you? My Dad keeps thinking they surely would have found it after 8 years. I any never heard of anyone this sick from IBS. Symptoms during bad flames horrible right quadrant stomach pain (mostly upper right) nausea, loss of appetite, pain after eating, extreme fatigue. I also take B-12 shots once a week for B-12 deficiency, joint pain, diarrhea, abdominal pain, low energy. After flare I slowly regain normal life and am OK minus occasional stomach issues. But usually still require Bentyl. I take probiotics, gluten free, and LOW FODMAP. I have a long history of medical issues since childhood including joint pains, allergies, sinus issues, and had Lyme Disease back in 1994. I have tired everything, I'm exhausted any replies are really appreciated. Thank you!!

Last edited by BeccaB; 05-15-2017 at 04:03 PM.
05-16-2017, 04:20 AM   #45
DEmberton
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Hi Becca. I was told "just IBS" when I was 25 after a gastroscopy and sigmoidoscopy (but not a colonoscopy) found nothing. When I was 42 and having got a lot worse and losing a lot of weight over a year they looked properly and I was diagnosed with Crohns. I think it's quite a common story around here.

I hope you get an answer soon.
05-18-2017, 08:55 AM   #46
MizzSarah
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I have a question for you guys that have been diagnosed with arthritis. How was it determined you have it?

I've had joint issues for many years now, I'm sure connecting with the Crohn's. I saw a rheumatologist as a child but I can't recall ever getting blood work to determine if I have a rheumatoid factor etc. Recently had bloodwork done for my referral to an adult rheumatologist and if I am correct---I was positive for HLA B27 and obviously my c reactive protein is an intermediate risk. Would this be enough for a diagnosis?
05-18-2017, 09:05 AM   #47
ronroush7
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I was in ER a couple of years ago for problems related to the Crohn's disease. They, out of the clear blue, did an x-ray and found minor arthritis in my lower back.

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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.
05-18-2017, 08:55 PM   #48
my little penguin
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Mizzsarah
Hla b27 is more common with spondyloarthritis
It's common in Crohns patients
It can be dependent which means it moves from joint to joint (mainly lower joints ) during GI inflammation
Or independent
Independent flares on the joints regardless of the GI inflammation

The rheumo will need to exam all your joints and possible do imaging ultrasound /X-ray or MRI
Most require seeing the inflammation present
Some require seeing the patient with issues for 6 months prior to officially dx SpA
But may still treat prior to the official dx

Tagging Maya142

Ds has the kiddie version
JSpA
His is independent of his Crohns flares

And affects his hands the worst

http://www.spondylitis.org/Enteropathic-Arthritis
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05-18-2017, 10:28 PM   #49
Maya142
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Recently had bloodwork done for my referral to an adult rheumatologist and if I am correct---I was positive for HLA B27 and obviously my c reactive protein is an intermediate risk. Would this be enough for a diagnosis?
Just being HLA B27+ is not enough to diagnose you with SpA. But if you have other symptoms - such as morning stiffness, pain that gets better with movement, swollen or red or warm joints - then it could certainly be SpA. Usually the lower back (SI joints) and hips are involved but honestly any joint can be involved.

Generally the rheumatologist will examine you and will probably do some imaging. X-rays are the first step and if those are negative, then probably an MRI will be done.

Spondylitis.org has lots of information about SpA. There are two basic types of SpA - axial and peripheral. In axial SpA the spine is involved and in peripheral SpA, the spine isn't involved. Both are usually treated with NSAIDs and if those fail, then biologics. Since most Crohn's patients cannot take NSAIDs, biologics are often used. Methotrexate works well for peripheral joints (joints other than the spine - knees, hands, elbows, heels, ankles etc.) but not for the spine. Sulfasalazine is also occasionally used.

Typically, you either need inflammation visible on MRI or elevated CRP before they will consider biologics for axial SpA.

Good luck!
05-19-2017, 01:45 PM   #50
MizzSarah
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what makes no sense is that my RF level was negative so now I'm being referred to 2 different rheumatologist. I guess my case requires a two person opinion.

I'm worried they won't find anything in X-rays or MRI's and will give me some title for unexplainable pain and inflammation. As a child before the onset of the Crohn's I had tremendous joint pain and inflammation. Originally thought to be a result of a bug bite that then progressed to all my joints. They first diagnosed me with reflex sympathetic dystrophy (one ankle was swollen.) little blood flow appeared to be going into my left ankle.(some test they did) Then I got the idiopathic pain syndrome which I still have flashbacks of someone telling me it's derived from the word idiot...

I just feel like their setting me up for another combination of disappointments.




Just being HLA B27+ is not enough to diagnose you with SpA. But if you have other symptoms - such as morning stiffness, pain that gets better with movement, swollen or red or warm joints - then it could certainly be SpA. Usually the lower back (SI joints) and hips are involved but honestly any joint can be involved.

Generally the rheumatologist will examine you and will probably do some imaging. X-rays are the first step and if those are negative, then probably an MRI will be done.

Spondylitis.org has lots of information about SpA. There are two basic types of SpA - axial and peripheral. In axial SpA the spine is involved and in peripheral SpA, the spine isn't involved. Both are usually treated with NSAIDs and if those fail, then biologics. Since most Crohn's patients cannot take NSAIDs, biologics are often used. Methotrexate works well for peripheral joints (joints other than the spine - knees, hands, elbows, heels, ankles etc.) but not for the spine. Sulfasalazine is also occasionally used.

Typically, you either need inflammation visible on MRI or elevated CRP before they will consider biologics for axial SpA.

Good luck!
05-19-2017, 03:30 PM   #51
ronroush7
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Sending support, Sarah

05-19-2017, 03:37 PM   #52
Maya142
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RF levels are always negative in spondyloarthritis. ESR and CRP are sometimes elevated, sometimes not. My younger daughter has an elevated CRP, my older daughter has negative blood work, always.

Most people with SpA are HLA B27+ but it is also possible to have SpA and be HLA B27-.

I would try not to panic. Just take it one step at a time.

Pain syndromes are very real and are thought to be related to nerves sending pain signals when they should not. My younger daughter has amplified pain syndrome, on top of the arthritis. Her doctors say that because her joints were so inflamed for so long, her nerves just got used to sending pain signals to her brain. Once we managed to get the inflammation under better control, they STILL continued to send those signals and she continued to be in pain.

Amplified pain syndrome is treated with intensive PT and OT and aquatherapy as well as cognitive behavioral therapy to learn how to cope with the pain. My daughter did an inpatient pediatric pain program that combined all these things. It really helped. She went from being completely unable to function because of the pain to a much more active and happier teenager. She started sleeping through the night for the first time in years!

There are also medications like Gabapentin and Lyrica which really help some people with pain syndromes.

I would take it one step at a time - first see the rheumatologist (or two) and see what they think you have. Then take it from there.
05-19-2017, 03:40 PM   #53
Maya142
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I wanted to add - the inflammation is easily seen on MRIs, so you don't need to worry about that. If there is inflammation, it will show up on MRIs.

X-rays don't show inflammation, just damage from past inflammation. Damage can take 8-10 years to show up on x-rays, so they are often normal early in the course of the disease.
05-19-2017, 04:12 PM   #54
MizzSarah
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I was apart of a children's pain program as well and they seemed very eager to discharge me even after I plead that I wasn't ready yet. Glad to hear your daughter benefited from her program. I hope they weren't pushing her to be discharged from the program so quickly as I was.

RF levels are always negative in spondyloarthritis. ESR and CRP are sometimes elevated, sometimes not. My younger daughter has an elevated CRP, my older daughter has negative blood work, always.

Most people with SpA are HLA B27+ but it is also possible to have SpA and be HLA B27-.

I would try not to panic. Just take it one step at a time.

Pain syndromes are very real and are thought to be related to nerves sending pain signals when they should not. My younger daughter has amplified pain syndrome, on top of the arthritis. Her doctors say that because her joints were so inflamed for so long, her nerves just got used to sending pain signals to her brain. Once we managed to get the inflammation under better control, they STILL continued to send those signals and she continued to be in pain.

Amplified pain syndrome is treated with intensive PT and OT and aquatherapy as well as cognitive behavioral therapy to learn how to cope with the pain. My daughter did an inpatient pediatric pain program that combined all these things. It really helped. She went from being completely unable to function because of the pain to a much more active and happier teenager. She started sleeping through the night for the first time in years!

There are also medications like Gabapentin and Lyrica which really help some people with pain syndromes.

I would take it one step at a time - first see the rheumatologist (or two) and see what they think you have. Then take it from there.
10-11-2017, 08:32 AM   #55
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Hello, I have RA & Crohns. I was diagnosed with RA four years ago, and Crohns this past March, so I am newly diagnosed. I live in Canada, and dont know if any other Canadians are on here, but hoping someone can offer some advice.

I work full time, my RA was controlled by was Enbrel, but I believe its now failing. I will be starting Remicade infusions on Oct 20th to treat both RA and Crohns.

Can anyone tell me the pros of disclosing medical information to your employer? does it generally help you, or hurt you?

My employer does not know i have RA, too many people are misinformed and dont understand it, this is not something I plan to disclose to my employer unless I have to miss alot of work because of it.

However, co-workers and supervisor are aware I have Crohn's, my supervisor said she has to report it to HR. So I guess now HR knows. Should I be contacting HR to clarify as I have no idea what exactly my supervisor told them. I am awaiting an MRI in November to determine if I need surgery on a stricture, and Remicade infusions are starting soon. I will be missing some work because of this.

Is it in my best interest to talk to HR myself, and what exactly do you tell them? how much do you tell them? I dont want my absences counted against me, as they are not something I can help. I also dont want any prejudices or hold backs on my career because of my condition. I am well liked and respected, but I have seen they way other employees have been handled, and I am kinda scared.
10-11-2017, 09:57 AM   #56
ronroush7
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I would make sure of what HR has been told. I am going to tag cmack.
10-11-2017, 10:15 AM   #57
my little penguin
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Is the US there is family medical leave act
Hr typically has an outside company
This protects your job when you need to leave due to Crohns
I would check for something similar
First before talking to hr
10-11-2017, 10:16 AM   #58
my little penguin
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https://www.ontario.ca/document/your...-medical-leave
10-11-2017, 10:47 AM   #59
Hobbits
 
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I would make sure of what HR has been told. I am going to tag cmack.
Thank you.
10-11-2017, 10:48 AM   #60
Hobbits
 
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Is the US there is family medical leave act
Hr typically has an outside company
This protects your job when you need to leave due to Crohns
I would check for something similar
First before talking to hr
Thank you.
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