Arthritis and a bit of an update

[KayleighMeek]

Hello everyone,
I haven't posted properly in a while but I am always looking around checking how everyone is doing and helping if I can.
Well my stomach has been pretty settled so far this year I still have a couple of bad days a week but nothing like what it was before so I can deal wih it. My problem is still arthritis in my right hip which the rheumatologist diagnosed as enteropathic about 3 years ago. It has been painfull since he begining of the year and I have been given sulfalsalazine 2 tablets twice a day alon with steroid injections but I am still havin pain. Again it's not as bad as it was in the past but it is still stopping me from doing normal things and I am starting to get really annoyed. I have had two rheumatology appointments cancelled now but hopefully I will see them in April. I just don't know what else can be done to get this under control I currently take methotrexate along with the sulfalsalazine and I have tried aza,6mp,remicade and humira all have given me allergic reactions. Does anyone know what the next step could possibly be? Because my reumatologist last time I saw her told me there weren't anymore medications she could give me as they aren't licenced for Crohn's disease. Could a bowel resection help with the joint pain and going back on mehotrexate after surgery?
Any advice would be great feeling so frustrated I always feel like it is holding me back as there is so much I want to do that I don't feel I can at the moment. Plus me and my partner want to start tryin for a family but we both want me to be in the best health before we try. Oh and I also went to a dietician today she was really nice and said what I am doing a the moment is ok but gave me some other things to maybe exclude form my diet and if it doesn't work trying he FODMAP diet.
Thanks everyone wishing you all well
Xx

 

[Cat-a-Tonic]

Hi Kayleigh, I don't have a lot of advice for you but I am in the same boat as you. I also have arthritis in my right hip. It was diagnosed a couple years ago although my doctor doesn't know what kind of arthritis it is. I was sent to physical therapy for it, which helped a lot, but it's been aching again this winter so now I'm going to see a rheumatologist about it. My IBD is in remission so it's frustrating that the arthritis is acting up even when the guts are quiet. So I don't know if you getting a resection would quiet the arthritis, but in my experience IBD remission does not equal arthritis remission. Have you been to a physical therapist? PT helped me a lot for a good couple of years. I hope you can figure something out to get some relief - good luck!

 

[KayleighMeek]

I haven't been to PT but I haven't had a rheumatology appointment for a while because they keep cancelling them. I had to come home from a night shift at 2am this morning as the pain was becoming unbearable I took tramadol and co-codamol and it still didn't touch the pain. Like you said it can be hard to deal with when everything else seems to be fairly well controlled. Also last night I had upper right pain under my ribs very strange and was really tender I just don't know what is going on or what I can do. I am going to get blood tests and see about moving the rheumatology appointment forward. My other half asked me last night if it could have been the methotrexate causing the pain as I took that Monday morning and by the end of the day could barely walk I don't know if that could be it but its something I will be keeping an eye on.
Thank you for replying its good to know that we aren't alone x

 

[Cat-a-Tonic]

I haven't been on methotrexate myself so I don't know much about it, but I hope you can figure things out and get some relief. Good luck with the blood work and the rheumy appointment too. Hope you feel better soon!

 

[Carol M]

Has anyone tried Water Aerobics? Increasing mobility and flexibility (made easier by the water) has been suggested to me by a Physical Therapist, internist and Rheumatologist. Of course feeling like I can get into a swim suit and to a pool haven't worked out yet....

I just started Humira and have my fingers crossed. The Sulfasalizine didn't work for me.

I actually felt great during my pregnancies. Be careful after delivery though - hospitals want to give laxatives to new moms to help things get moving. I didn't need it. Asked specifically if it was a softener or laxative and they told me softener so I took it to make them feel better. (it turned out to be a laxative) It was weeks before I got back under control.

Are their any trials taking place with new meds for crohn's and/or arthritis?