Joint pain which is particularly bad in winter. Anyone have same problem?

[Nadia96]

Hi. So I’m 21 and have had Crohns since I was 9 and I’ve noticed in the winter that my joints are in agony especially in the cold weather. It has been much colder with it being 1-2 degrees Celsius and I wake up in the middle night crying in pain. I have had a flare up two weeks ago and still haven’t recovered from it. Went in for a camera test through my stoma and the inflammation is still quite moderate and they want to change my medication as the current one I’m on is not working as well as it should be. I know that with IBD that the joints can get inflamed and there is a risk of arthritis.

But does anyone have the same problem in the winter?

 

[my little penguin]

Spondyloarthritis

Enteropathic Arthritis (EnA)

Arthritis Associated With Inflammatory Bowel Disease
In addition to inflammatory back and/or joint pain, inflammation of the intestine, which includes the bowel, is a predominant feature of EnA. Symptoms may include chronic diarrhea, abdominal pain, weight loss, and/or blood in the stool. The most common types of inflammatory bowel diseases are Crohn’s, ulcerative colitis, and undifferentiated colitis.

From
http://www.spondylitis.org/Types-of-Spondylitis

Overview of Enteropathic Arthritis/Arthritis Associated With Inflammatory Bowel Disease

Enteropathic arthritis, or EnA, is a form of chronic, inflammatory arthritis associated with the occurrence of an inflammatory bowel disease (IBD), the two best-known types of which are ulcerative colitis and Crohn's disease. About one in five people with Crohn's or ulcerative colitis will develop enteropathic arthritis.
The most common areas affected by EnA are the peripheral (limb) joints and, in some cases, the entire spine can become involved, as well. Abdominal pain and, possibly, bloody diarrhea associated with IBD are also components of the disease.

From
http://www.spondylitis.org/Enteropathic-Arthritis


Ds was dx with Crohns at 7
And was dx with Juvenile Spondyloarthritis at 10
It can independently of Crohns it at the same time as Crohns flares

Tagging Maya142

 

[ronroush7]

Hi. Have you been to see a rheumatologist? Hope you feel better soon.

 

[Maya142]

Hi and welcome! My daughters both have Spondyloarthritis (SpA). The younger one also has Crohn's. Spondyloarthritis is associated with Crohn's. Both my girls struggle with more pain and stiffness in the winter.

You should definitely see a rheumatologist. If you do have SpA, it needs to be treated by a rheumatologist. Inflammation in the joints can cause damage over time, so the inflammation needs to be controlled. There are several medications used - some of which overlap with those used for Crohn's. Certain biologics, for example, like Remicade and Humira, are used for both SpA and Crohn's. Methotrexate, which is an immunomodulator, is also used for both SpA and Crohn's.

Typical symptoms of SpA are morning stiffness, pain that gets worse with rest and better with movement (things like sitting through class or sitting through a movie are hard for my girls) and warm or swollen joints. Any joint can be involved though most often the SI joints, spine, hips and lower limb joints (knees, ankles) are involved.

Here is some info:
http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

While you are waiting, things like heat and ice can help. Stretching and even gentle exercise can make a big difference (low impact - swimming is best, but biking and walking are also good). A TENS unit may also help.

Good luck!

 

[Nadia96]

I’m still trying to get used to the site lol

 

[Nadia96]

Hi and welcome! My daughters both have Spondyloarthritis (SpA). The younger one also has Crohn's. Spondyloarthritis is associated with Crohn's. Both my girls struggle with more pain and stiffness in the winter.

You should definitely see a rheumatologist. If you do have SpA, it needs to be treated by a rheumatologist. Inflammation in the joints can cause damage over time, so the inflammation needs to be controlled. There are several medications used - some of which overlap with those used for Crohn's. Certain biologics, for example, like Remicade and Humira, are used for both SpA and Crohn's. Methotrexate, which is an immunomodulator, is also used for both SpA and Crohn's.

Typical symptoms of SpA are morning stiffness, pain that gets worse with rest and better with movement (things like sitting through class or sitting through a movie are hard for my girls) and warm or swollen joints. Any joint can be involved though most often the SI joints, spine, hips and lower limb joints (knees, ankles) are involved.

Here is some info:
http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

While you are waiting, things like heat and ice can help. Stretching and even gentle exercise can make a big difference (low impact - swimming is best, but biking and walking are also good). A TENS unit may also help.

Good luck!

Thanks for the information, I will definetly mention it to my consultant when I see him next. I am on vedoluzimab, but when I asked the IBD nurses they say it’s unlikely linked to the medicine and more linked to the crohns.

The pain I get is mostly stiffness in my knees and I end up limping from the pain and stiffness. When I was younger I mentioned it to my consultant back then and they sent me for dexus scan and referred me to a rheumatologist but both said nothing.

I will definetly try some heating pads or some ice. I think walking is a bit difficult for me as it’s too cold and the cold is affecting the pain and also I’ve caught so many chest infections, that I tend to stay inside more.

But thanks again for all the information

 

[Nadia96]

Hi. Have you been to see a rheumatologist? Hope you feel better soon.

I did see one when I was younger and was in the children’s hospital, but she did put it down as flat feet and not related to the crohn’s. Although I do notice that only in winter that I get this pain. So it is most likely a flare up as I do usually get ill around this time and I am still recovering from my last flare up

 

[Maya142]

You can ask your GI if you can use Voltaren gel - if you are in the UK, I think it might be over-the-counter. It is an NSAID but it is topical, so less is absorbed. So it is not so bad for your gut, compared to an oral NSAID like Ibuprofen.

Vedolizumab does not treat arthritis, so it's possible that you are developing arthritis now, even if you did not have it before. Or if you did have it all along, it is possible it was treated by the meds you were on then (for example, if you were on Remicade, that could have been treating both conditions and now that you're on vedolizumab, the arthritis is re-surfacing).

I have also read that some people's joint pain gets worse on Vedolizumab - my daughter's definitely did. We had to stop vedo after two doses - it turned out she had developed drug induced Lupus from it.

You can also try knee braces - sometimes extra support helps.

 

[Nadia96]

You can ask your GI if you can use Voltaren gel - if you are in the UK, I think it might be over-the-counter. It is an NSAID but it is topical, so less is absorbed. So it is not so bad for your gut, compared to an oral NSAID like Ibuprofen.

Vedolizumab does not treat arthritis, so it's possible that you are developing arthritis now, even if you did not have it before. Or if you did have it all along, it is possible it was treated by the meds you were on then (for example, if you were on Remicade, that could have been treating both conditions and now that you're on vedolizumab, the arthritis is re-surfacing).

I have also read that some people's joint pain gets worse on Vedolizumab - my daughter's definitely did. We had to stop vedo after two doses - it turned out she had developed drug induced Lupus from it.

You can also try knee braces - sometimes extra support helps.

I’ve tried ibuprofen gel and that only helps for a short period of time. I won’t be able to use Voltaren as I am asthmatic and it does interact with it. But I will ask my consultant for other alternatives.

When I mentioned about Vedoluzimab, I asked the IBD nurses and they said that joint pain wasn’t a symptom of it which I was actually quite surprised at as I did notice the joint pain getting worse, and also having read stories of people getting increased joint pain, but it could’ve just been me having a flare up. I have been on it for 6 months but now the doctors want to change it to ustekinumab as there has been no change since last year

 

[Maya142]

Ustekinumab does treat arthritis - it's called Stelara in the US. That might be a better option for you - hopefully it will help your joints.

The other option would be to ask your GI if you can take an NSAID as needed. Celebrex is used for people with IBD sometimes, because it is easiest on the gut. My daughter's arthritis is much more severe than her IBD so she is allowed to take an NSAID daily.