Opinions on crohn's arthritis/joint pain

So, I told everyone my story a few months ago.. extremely suspect crohn's disease, been treated for it with prior doctor, current doctor wants to see inflammation before treating, etc etc.

In the meantime, I've been dealing with joint pain since about two month's into my four month prednisone treatment. Along with long standing very minimal joint pain in my wrists. When I was on the prednisone, my wrist pain cleared up. As I tapered down, my wrist pain came back, and my knee pain showed up with a vengeance, and hasn't gone away since. It feels like it gets worse every day.

It's the worst when I sit still too long. Sitting down in class, sitting in the car/driving for longer periods, laying in bed. They're are usually hurting pretty bad after a long day. I feel the pain throughout the day, which makes things like walking up stairs or walking for long periods difficult, painful, and weak. Walking for shorter periods, and moving them when they get stiff absolutely helps. However, the kicker: I'm not stiff in the mornings. My pain is not the worst in the morning.

My doctor did a rheumatoid factor test, some additional bloodwork, xrays, and an mri at my request. All negative. The MRI showed a small effusion. The bloodwork showed only low vitamin D. My doctor prescribed me Neurontin 1200mg/day, and suggested that this may be fibromyalgia. He said that without an official crohns diagnosis, no inflammation in my blood tests, and based on my description of the pain (not at worst in mornings,) he couldn't dx ibd related arthritis.

My GI ordered a dexa scan, which revealed ostopenia, or early bone thinning.

I sought out a second opinion for the joint problems. This doctor agreed with the fibromyalgia diagnosis, however explained to me that this wasn't the typical fibromyalgia, this was a diagnosis of unexplained pain. She went on to explain that I DO NOT have ibd related arthritis. She said that while I have some characteristics of it, and I have an effusion in my knee, neither are worth looking into. She said that "some people just have pain." She took me off of the neurontin, told me that I should not need the Voltaren gel (NSAID Gel) that I have been using (the only thing that's helped so far,) and told me to take a multivitamin.

She is ordering a test to look for secondary osteoporosis. She says it could be from prednisone for 4 months, but that it's unlikely with my age (23 yrs old.)

I have an endoscopy and colonoscopy scheduled for next monday. I believe that I am in remission. I've been having a few extra bad days recently, so she wants to check and see if we can find anything.

Is it possible to have crohn's related arthritis without evidence of inflammation on an MRI?

I feel hopeless after these past couple of appointments, and wanted to get the advice of the community.

That is what I was afraid of. The first rheum didnt seem to know much about ibd arthritis, while the second did seem to.

How do you tell a doctor theyre wrong though?

i was on steroids for four months after a 9 month flare. Pain, fatigue, diarrhea, etc. During the flare, i had a lapse of insurance and didnt see a doctor again until it was really bad. He ordered a cat scan of my small intestine which showed no inflammation, but did reveal a blockage known as superior mesenteric artery syndrome. This most recent doctor ordered an mre of the small bowel which again, showed nothing. So shes thinking that maybe its actually been colitis all along. I suggested the endocopy along with colonoscopy so i wouldnt be put to sleep twice if she wanted to do the endoscopy next.

I agree! I am absolutely positive that they will not find anything on my colonoscopy or endoscopy. My old doctor wanted to wait to treat me and then wait for symptoms to return before doing more diagnostic testing. I told my doctor that this was the plan I was comfortable with and she said its fine but she keeps pushing for more tests, so on the off chance that they might find something and i can get some help for my joints, i may go ahead and have it done. (Its free and the prep with this doctor is just miralax and some pills)

That's a good point. I will mention this to her. She tried to dx infection related ibs after my negative mre, but i reminded her that steroids do not help ibs, and that i have a crohns marker, etc. Im sure she will try to diagnose that again even though i feel that i am currently in remission.

She prescribed me pentasa prior to the mre but changed her mind quickly after and said she wanted to hold off on medication until we had an official diagnosis. :( I still have two big bottles of pentasa from before she changed her mind

sulfazine treats both colitis and joint pain. pentasa does not cover joint pain.

My only problem is that there are only two in network rheumatologists in my state. I was toying with the idea of just going to an out of network doctor as a self pay patient to see if they could help me better. I cannot just accept "unexplained chronic pain" as a diagnosis with no plan. I am in constant pain every day that has started to really affect my life. :(

I dont think i phrased myself correctly before. This new doctor advised that i stop all medications, "because i shouldnt need anything." She referred to herself as a second opinion, but she did more than just advise, so maybe it is an official switch. I feel more confident with her than with my old rheum but i still dont feel taken care of.

Im trying to decide what my next step is. You have all been great with all of the replies, as always!!

I have Crohn's arthritis that's worse pain-wise especially, than what my gut involvement would suggest. Part of that may be due to injuries, but my GI did admit that in some patients the arthritis has been known to stay active despite what's thought of as "the norm" of it mirroring the activity of the disease.

I've done ANA and RA factor tests more than once, which shows I have active inflammation, but I'm negative for RA. I've been checked of Lupus, which was also negative.

My experience with a rheumatologist was underwhelming. She knew basically nothing about enteropathic arthritis, and where I live, there isn't much to choose from in my rural state.

I have recently gone on sulfasalazine, at kazbern's suggestion, after all these years of nothing helping except prednisone, and it is making some difference. I haven't been on it at full dose for a month yet though. I'm starting to get better range of motion, but alas, the pain is still there. I think because I've gone almost eleven years with unrelenting arthritis except for one prednisone treatment during that time, that my muscles and tendons are really affected and that's why I'm still in pain.

I never got any relief from Neurontin and only a tiny bit from Lyrica.

I'm sorry for all you are going through. It is so frustrating. I've had on and off joint pain for about 4 years. It got worse and has hung around since May. My rheumy thought it was just Crhon's related arthritis, but did finally do an MRI of my right knee. Turned out to be osteo arthritis. He sent me to an ortho, who didn't do much except send me to PT.

I'm still having joint pain in my wrists. The rheumy only suggests doing a round of pred or going on methotrexate. I think he doesn't really know what to do with me.

Any way, I just wanted to let you know you aren't alone in getting some one to help. I've gone back to my GP and she's at least trying a couple of things to get me some pain relief. I think it's important to find a doctor you are comfortable with. I'm thankful that both my GI and GP will look at the big picture and help suggest who to see or what course of action to take.

Hang in there and speak up for what you need!

JSI,

No, the rheumy didn't put me on sulfasalazine. She wrote me a script for Ultram, which gave me hives. I never went back to her. It wasn't worth the 200 mile round-trip.

My GP is who has started me on the sulfa drug. Initially, I was concerned about asking because I had sulfa listed as an allergy, but I told him that it had been in my medical records probably since I was a kid because I didn't even remember taking a sulfa drug. Anyway, I told him about this forum and that a fellow Crohnie (kazbern) who does a lot of research had encouraged me to try the medication. Even though I had taken mesalamine for at least nine years, no GI or the rheumatologist had thought to tell me that the sulfa part could be beneficial for my arthritis. I mean I knew about the drug, but didn't understand the importance of the sulfa itself until kazbern explained it.

I know most doctors would roll their eyes when a patient tells them another patient suggested something, but it was like, "Oh yes, let's try it! I have my RA patients on such and such dosage, and colitis patients usually start at, etc. etc." He did blood work as a baseline and I go back in two months. So far I've been tolerating it.

Funny, since i was diagnosed with Crohns and started treatment for it, I have never in my life experience the pain that I get in joints I have never had before. There are times I can’t even lift my hands above my shoulder. There are times that I can barely walk, that every step I take I literally feeling the joints just rubbing together. Once I get my infusion of Remicade, all gone. Sometimes when the Remicade wears off, it starts all over again. Haven’t seen anyone on this, maybe I should so I could stop suffering. But on a side note with arthritis, low vitamin d is known to make arthritis worse, and I also heard and saw that cutting out Gluten people felt night and day, arthritis gone.