Not sure if it is EIM or totally unrelated to Crohns

[cherub3808]

Hi I have been lurking for a while gathering up the courage to post but after today the pain has overridden my fear.
I was diagnosed in January with crohns after my specialist found two areas of ulceration one at the top and one at the end and all the biopsies in between tested positive to inflammation. He put me on Prednisone which apart from the horrible side effects seemed to be working until I reached the taper at 20 -15mgs when most problems came back the most troublesome being the pain both stomach and joint pain. By the time I saw him again I was down to 5 mg so he increased the prednisone back to 25mgs with a gradual taper and I started Mesalamine 500mgs 2 tablets 3 x a day. About 5 weeks ago I started having the most awful pain in my legs to the point of tears and I could hardly walk.Went to my GP who doesn't like Prednisone and blamed it on that. She said it couldn't be the mesalamine as it takes 3-6 months to work. Anyway to get my issue I am now off all prednisone and just on the Mesalamine and vitamin D and these last few days has seen a massive increase in muscle and joint pain. Again walking was difficult today as well as my shoulders, back and neck and my tailbone especially. Can you have all this type of pain as a EIM without any "bowel issues" or is this totally unrelated? I am due to go back to my specialist next week and just not sure if this is for him or what. Thank you for reading my never ending post ::confused2:

 

[Staceyscarlete]

In my experience joint pain may come on once you are off prednisone and will last for generally a month or two. Sometimes towards tapering to the 5mg but not when you are taking it full force bc it is an anti-inflammatory drug used for decreasing inflammation often even in rheumatology patients. It does do wonders for stopping the crohns for a period of time. What was your high dose of prednisone and for how long did you take it? I've found that makes a difference in maintainaning remission. Also crohns patients often experience other forms of auto immune disorders such as arthritis or issues with vitamin absorption depending on where in your intestine you flare. Also remember that your inflamed intestine can push against nerves that could cause pain in you legs especially if it is in you colon or when you having multiple bms. I have terrible pain in my left leg when I'm flaring and it begins to subside as the meds help. Bone density as a result of prednisone is more of an issue when you've been on prednisone for a long time if you are a female or as your getting older. How bad are your bms when this leg pain comes. Have you tried taking a Tylenol 3 for pain that often helps me both sleep relax the lower urge to go and helps with the pain in my leg. What is your crohns like right now?

 

[cherub3808]

Hi Staceyscarlete,

Thanks for replying I really appreciate it. It is funny how you said about while being on a higher dose of prednisone as it is an inflammatory the pain subsides and it did wonderfully I havent been that pain free for a while. I think that maybe half of the problem too is how much the pain has come back with a bang after not having it for a while but it wasnt this bad before though.Originally I started on 60mgs of prednisone and that was in January this year. I have also noticed a change in going to the loo going more frequently and much looser before my problem was more mucous and blood and pain nothing else like diarrhoea or that, but in saying that that has started to come back as well, and my mouth is also getting ulcers again so I guess it is all coming back again. What I cant understand though is I thought my crohns wasnt that bad compared to a lot of people so why doesnt the medication hold it at bay? Question probably for the specialist next week I guess. I just hope I can get relief for the muscle pain the rest I can handle at the moment but not that.Thanks again for replying you have helped a great deal

 

[David]

Hi cherub, I'm glad you felt comfortable posting

What is the brand name of the mesalamine that you are on?

Mouth ulcers in Crohn's Disease patients are sometimes a result various B vitamin deficiencies. Have you been tested to see if you're deficient in any of the B vitamins such as B12, folate (B9), or B6?

When you say "walking is difficult" do you mean because of the pain or you're having balance issues?

 

[cherub3808]

Hi David thank you also for replying. The brand name of the mesalamine I am on is Salofalk.
In regard to the vitamins I have only been tested for Vitamin D for which I am now taking supplements. My walking is difficult from pain sometimes it is so bad I have to stop and try and wait it out before I can go any further. I just dont understand how you can feel so much worse on medication that is supposed to help very confusing.
Thanks again

 

[Staceyscarlete]

Honestly I felt that Salofalk did nothing for me. I was on enemas for 6 months then 4000mg daily then enema and the pills and finally I had to take the prednisone. If you Crohns hasn't settled down you may need to go on imuran or something stronger with the prednisone. How long were you on prednisone for at 60mg and what was your tapering schedule? That makes a big difference in whether it lasts or not and in side effects of the prednisone. The knee pain and inflamation can be related to both the pred tapering and the flare.

 

[David]

I would DEFINITELY get tested for, at the very least, vitamin B12 and vitamin B9 (folate) deficiency. If you can talk them into testing for more, all the better.

You mention that there are two areas of ulceration, one at the top and one at the bottom. Was the top one in your small intestines or at the start of your large intestine?

Did the body pain start closest to when you began taking the mesalamine, prednisone, or vitamin D?

 

[cherub3808]

Hi I went back to the specialist today and he is stumped as to what could be the cause. He doesnt believe it is the from taking the prednisone at all. He has stopped the mesalmine altogether and I have to have blood tests and I noticed B12 and folate are on there. I have to go back in a month to see if the joint/muscle pains have stopped or not. If not well he will then send me to a rheumatologist as he said that you can have joint problems with crohns but it is usually one here or there not what I am experiencing. And then it will be then to find out what happens next for the crohns medication wise.So it is just wait and see
Thanks for your help

 

[David]

Good luck! Let us know the test results if you're comfortable doing so. And we're here for you anytime you need us in the mean time

 

[Twiggy930]

Hi Cherub,

My son has had something similar. He is 10 and was diagnosed with Crohn's in early February. He was put on a high dose of prednisone and Imuran. At the end of March, while still on a high dose of pred, he was suddenly unable to bear weight on his left leg. It was not extremely painful but he had discomfort in his upper thigh and the leg would just buckle when he tried to stand on it. He ended up having to use crutches to get around. Our GP initially pointed the finger at prednisone use and sent us to ortho. Ortho did xrays and ruled out bone damage. I then got our GI to refer us to rheumatology. It was a bit of an ordeal to get seen by rheumatology in a timely manner, and required our pediatrician to call and demand my son be seen right away, but we finally got in last week.

Turns out that the leg issue is related to Crohn's. He has inflammation in the muscles and tendons that surround the hip joint but not in the actual joint itself. He was put back on a relatively high dose of prednisone which I was skeptical of as all the leg problems started when he was on pred. However, I am HAPPY to say I was wrong and after only 2 days on prednisone he is WAY better. He was also started on sulfasalazine (similar to Salofalk) for the leg inflammation and we have been told to give it a good 3 months to kick in.

Through all this I have been dismayed at our GI's lack of concern about the leg. They acknowledged that it was a problem and was likely related to Crohn's but didn't push for my son to get seen by rheumatology. If you are in pain I would find a doctor that is willing to push for you to get seen by rheumatology ASAP. Find a good GP who will advocate for you! I wouldn't wait a month.

And yes you can have joint pain without bowel symptoms.

:hang: