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Posted 9/14/2011 4:00 AM (GMT 0)
I was not on prednisone that long when it happened to me so perhaps that is why it resolved more quickly for me. I did correspond with a guy who was a musician (banjo). He was having the same exact problem. I lost touch with him though. I am not having the foot pain anymore. I have been having a lot of shoulder pain but I think it is job related but, who knows? My memory is really poor. It may have been before 2009 that I had that foot trouble FWIW.

I sincerely hope that your joint problems will be managed for you. The little taste of it I have experienced is more than enough to breed empathy.
Posted 9/14/2011 8:25 PM (GMT 0)
I'm curious why your doctor restarted entocort AND pentasa. Sounds like this could possibly be a steriod withdrawal issue...wonder if your joint issues would go away while just on entocort? Or did you take that approach first and find out that you need to be on both to prevent the joint pains?
Posted 9/15/2011 2:46 AM (GMT 0)
I had severe joint pain before predisone...I literally was limping and having severe numbness and tingling..I do know that my adrenals are asleep from predisone usage..I also ended up on thyroid medication after being on predisone..I was on sulfazine before starting predisone..I was told it may help with the joint pain and was used in RA patients..I did not tolerate sulfazine well along with any sulfa based drug..I asked for relief from joint pain for along time..I was only told to take tylenol and use a heating pad..The pain comes back when tapering..I have been not been on cimzia..

Cindy
Posted 9/16/2011 11:40 AM (GMT 0)

To Clonehead - thanks for the post.  Why?  Because after four (4) doctors and no solutions, he's experimenting and I agree.  You may be correct about the Entocort withdrawal, but here's an interesting point.  Now that I'm back on the meds, I'm still NOT at 100%.  Still have some weakness in the legs and some, but not great, joint pain - all of which I did not have before the drug swapping program.

Cindy - I'm real sorry to hear about your situation.  Prednisone is both a miracle drug and an evil one - like selling your soul to the devil.  If you can stay off of the stuff, you're ultimately much better off.  You and I just need to find an alternate solution to our pains.

Cheers,

BBE

Posted 9/16/2011 11:47 AM (GMT 0)
Clonehead - sorry, I didn't respond to all of your comments. Yes, we "tapered up", one drug at a time. I think he was trying to rule out Pentasa. I've come to learn that the affect of these drugs on these new symptoms is slow, indeed, taking a long time to get things back to normal. I've been back on the full regimine for a week now and still have some side effects as mentioned in my previous post. I have an appointment later today and we'll have a long discussion about what has been happening. I am only wishing that he can come up with a permanent solution.

Later,
BBE
Posted 9/16/2011 8:15 PM (GMT 0)
I didn't to ask "why" in a questioning your doctor kind of way. I was just curious what his thoughts were on it. I had the same issue as you earlier this year, and pentasa never came into our (me and my doctor) conversation.

I hope you and your docs can get it figured out!
Posted 9/17/2011 5:08 PM (GMT 0)
Ahhhh, clonehead - no worries. turn I did not take ANY offense w/ your post. I truly need straight forward communication if I am going to resolve this thing. We now have a new plan. Drop the Pentasa and taper off the Entocort VERY SLOWLY - like over a period of 4 or 6 months. I think this is a good plan, but I will also check w/ my GI to be sure. Stay tuned - there's more to come.
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