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Posted 9/21/2010 7:22 PM (GMT 0)
So I went to go see my primary care and gi, and they have taken me off all meds except for vitimans for the next two weeks (at least if I can take it).  The horrendous amounts of bone pain I have been having finally gotten to the point I cannot walk safely.  Mainly it is in my legs and feet (accidently ripped a chunk of my toenail off and so did not even notice the pain until I saw the bloody sock.
Posted 9/21/2010 7:38 PM (GMT 0)
Oh my word. I am so sorry. Is there ANY chance that it could be related to a Vitamin D deficiency? My sister recently suffered inexplicable bone and muscle pain for a couple of months. They ran all kinds of tests and were at a loss for a while until her OB looked at her Vit D levels. They put her on 50,000 IU and she soon got better. I understand that vitamin D can contribute to a lot of ailments. I hope you feel better soon!
Posted 9/21/2010 8:21 PM (GMT 0)
Ouchie!!! (((MMMNAVY)))
Posted 9/21/2010 10:10 PM (GMT 0)
So sorry, Navy. Ouch.
Posted 9/22/2010 12:33 AM (GMT 0)
Seriously ouch; I actually winced at that. Ick.

Hope the bone pain gets better, at any rate!
Posted 9/22/2010 1:06 AM (GMT 0)
Navy: can I ask why? What is the point of trying to survive a yucky disease and then be in agony? Would rather be on this side of the grass as pain free as possible or the alternative of being painless on the other side of the grass might be more appealing.
Posted 9/22/2010 1:22 AM (GMT 0)
Navy - I'm so sorry to hear. I hope they figure it out and can fix you up at least to a tolerable level. That's horrible to be in so much pain that the toenail faded in with the rest. (((((Hugs!)))))
Posted 9/22/2010 2:29 AM (GMT 0)
((((Navy)))))
Posted 9/22/2010 11:06 AM (GMT 0)
I started taking Methotrexate about 8 weeks ago, and am having a lot of bone pain as well, new with the start of Methotrexate. Wondering if anyone has any insight or experience with this.
Thank you,
Julie
Posted 9/22/2010 12:59 PM (GMT 0)
GEEEEEEEZ , hope they get to the bottom of this ,,soooooooon !!!! Jhicks may be on to something with the vit D . My lab work showed a level of 4 on vit D ,,,shoud be in the 30s . Started hi dose a few weeks ago and I do feel a little better. May be too soon to tell. Hope you feel better soon...
Posted 9/22/2010 4:03 PM (GMT 0)
We have been playing around with different dosages of meds, because except for some bleeding issues my crohn has been relatively good for me (10 or less stools a day). I am currently on 50,000 units of Vit D & b-12 shots, and have been since May (it is a chronic issue for me, and I have been tried weaning off of it). But they think that my bone marrow suppression issues might be linked to some of my meds because I was trying to wean from MTX to Immuran, and that might be causing this. But my ANA has recently gone nuclear as well, so it might be time to figure out what is going on with the lupus. Plus it appears like some of the metal pins fro some of my orthro stuff have moved (so I am clearly having some bone inflamation somewhere).
Posted 9/22/2010 8:27 PM (GMT 0)
Talked my doc and they are sending me for a bone scan, and to test vitamin D levels. Thanks for the advice, so grateful to have other people to talk with.
Posted 9/22/2010 10:12 PM (GMT 0)
Julie,
I would say also that with crohns comes a risk of ostoprosis, so it is something to be vigilant for. Also since you have been on the Anti-TNF's (remi, humira,etc) you might also want to think about getting your ANA tested for drug induced lupus (that is what my lupus is probably from).
Posted 9/23/2010 7:06 PM (GMT 0)
Navy: Am praying for you, be blessed and take care of yourself. If you can't stand it anymore . . .be quick to yell for help from your docs! Barb
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