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Posted 10/15/2018 5:04 PM (GMT 0)
Hi! I used to hang out on the Crohns board. I do have secondary RA due to Crohns (and some other secondary conditions). I am fortunate that I have RA pain, but am still able to go about most days with just OTC meds or a cane and heat pads. I have a knuckle that is giving me a lot more grief than ever before. Was wondering if you could give me some pointers (I don't have a Rheumatologist-long story).
My fingers are becoming more "pidgeon-toed" than they were before. My right middle finger is bowed and the knuckle has been purple for a couple of months. It helps if I brace it, but then it becomes stiff and I cannot touch the fingertip to my palm.
What do you think...RA getting worse or damaged knuckle not RA?
Thanks!
Posted 10/16/2018 1:42 AM (GMT 0)
I think you should try to get to a rheumatologist. They can give you meds that can slow down the progression of the disease. Good luck.
Posted 10/16/2018 2:54 PM (GMT 0)
Thanks Lisa...I had been to a rheumatologist and it was a negative experience. I am still trying to find a new one that does not have ties to the large teaching hospital in my town. My other reason for not getting into see one is that I do not want to go down the Remicade/Humira/specialty pharmaceutical discussion. My Crohns kicks up and my joints are causing me to use a cane more and more, BUT I am not sick enough to move to the "big boy" meds for the rest of my life yet.
I just am trying to figure out the single knuckle being worse than the rest of my joints. I am trying to figure out if I injured it (and don't remember) or if this is a progression sign---especially since it is lightly purple.
Thanks for the response
Posted 11/27/2018 9:35 PM (GMT 0)
Just a little update....I still have bruising and pain in the knuckle BUT I have found something that is giving it a bit of relief. I have wrist pain on the same hand and have been wearing a brace while I sleep. My knuckle is improving since the wrist brace. My husband thinks I was crushing my knuckle in my sleeping position from what he could see. The brace is avoiding that. Looking for a rheumatologist after 1/1 for the wrist, knee, hip, ankle pain---trying to find one that is not linked to the local teaching hospital. Thanks!
Posted 11/28/2018 12:00 PM (GMT 0)
Hi:
You didn't say when you were diagnosed with RA or where you are but unfortunately it sounds more like RA progression. Also some other joints have joined in the pain.

Golden rule of RA: Get aggressive treatment ASAP. RA is a crippling disease if it isn't caught in time. Good luck finding a Rheumy after 1/1. There are many RA medications before the "Big Boys". They all have side effects but serious ones are not usually common. Take Care!
Posted 11/28/2018 4:41 PM (GMT 0)
Thanks msOuchie. I've had Crohns my whole life, but not dx'd until 1990. The joint pain came along in the early 2000s. I finally saw a rheumatologist (maybe 2014 or15) who told me "you don't have arthirits" in a snotty way, but then my GP read the report to me and it stated "RA secondary to IBD found". It was a little disheartening and I just walked away from getting more care for a while (a lot of stuff going on in life as I am sure everyone has).
I live in the Rochester NY area...the big teaching hospital here has become all about the corporate finance versus the care (unnecessary tests, diagnoses that just appear on your record even though you test negative, no care for actual complaints). We have another hospital here and I am looking at moving my care there. The problem is the teaching hospital "owns" most of the area physicians.
Posted Yesterday 2:27 AM (GMT 0)
Honestly I think Humira would benefit both your Crohns & RA. The biologicals have been around now for a long time-
sometimes the benefits outweigh the risks

All my best
Weary
Posted 2/28/2019 6:01 PM (GMT 0)
Do some of your fingers get stuck? I had trigger fingers for years, and my RA doctor gave me a steroid shot in the knuckle. Six months later, and still is not freezing up.
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