this joint pain just gets worse

Hi all,

My main issues with CD over the last 20yrs have been my joints.  I had emergency surgery this yr for my CD tho the ileum perforated, then had to have 2 more surgeries.  When the surgeon operated he noted there were no intestinal CD in me at that time.  I am still having D from the surgery I had C before.  My ankle started to swell a few weeks ago and I called my GI (I have only seen this one 2 times since after my hospital stay I wanted this doc being that he is a crohns specialist rather than a regular GI).  Due to that he wants me to see an RA which I am going to do...been too long since I saw one in this state so I start over as a new patient.  My PCP called 5 RA offices and the soonest I can get in is Sept 18. 

My knee and hip as well as other ankle are being affected now too.  I still have dilaudid and oxycontin left over from my sureres and they are not even touching the pain...I still felt the pain while I was on 50mcg/h of fentanyl too.  I have lost a great deal of range of motion in all the joints being bothered but the knee is the worst.  My nana's wake is tomorrow and funeral the day after ...I am in so much pain its awful.  I just called my pcp office and hoping he gives me pred or at least give me something and maybe see him in the morning. 

My GI called in entocort (my abdomen is still tender but only when pressure is on the area.  He told me try to hold off as long as you can before taking the entocort (I have been on this before).  I dont think that the entocort will help my joints though being that it is non systemic.

Help please

I get the joint pain too in the ankles, knees and hips. My ankles swell badly and ROM it greatly reduced. Usually pred is the only thing for me that helps and it usually helps very quickly 2-3 days when I start it. Trying to get in to see an RA doc but waiting lists are long so going to get a referral when I see my GI in october (made that appointment in july and it was the soonest!!)

Karen, I can't be sure, but I think you need a referral. I would ask your GP to do that, not you're rhuematologist.
According to many of the posts I read here, a pain doc, is more likely to prescribe pain meds, if needed. Good luck.

thanks Nanners and Vicky! I have not seen my Family doc much since we moved here 2 1/2 years ago. I guess I felt funny calling him for a rx. I might make an apt with him soon and see what he says. he might be more sympathetic. he is in the same practice so my Rheumy would see the pain meds on my electronic chart though :) Karen

I ended up calling my PCP on his cell (yup we have his personal cell #). I asked him for the medrol dose pack (the 6 days of tapering pred). I just needed to get through today since my nana's wake was yesterday and the funeral was today. The night I started the pred I was doing much better. It isnt 100% but at least the pain I have now is tolerable. His office called 5 RA drs for me and the soonest I can get in with one is Sept 18. My joints got so bad sunday that I had to even hold onto the toilet seat to sit and to get up. I use to have an RA out here (went to 2 diff ones hated 1 of them beyond belief so I was willing to see anyone in my state (RI is very tiny and I live on the MA border) it had been so long since I had seen one out here that I was considered a new patient. Even if my joints act up again prior to the appt I will be in pain but hopefully wont have to deal with another family death (4 in 4 months so far...one was actually 1 week exactly to my nanas death). I also have another Uncle in ICU who isnt responding well to Tx of his illness. He is in his 80s We have a very large family on my papas side he is 1 of 8 and most all of his sublings had more than 1 child (the one in ICU has 9 children...all maried with lots of grandkids). We wear name tags at our family Chrismas party since there are so many.

My GI wants me to see a Rheumy before placing me back on remicade or trying Humira. This GI that I see now is new to me so he had old recordxs but I am sure not in depth as he would like. I had 3 volumes at my last GI not including my Ped GI or from my GI when I was in California.