fantastic interview, Vanessa. So much struck me in this post, such as the rheumatologist saying that the pain of RA is equivalent to the pain of bone cancer. That's going to sit with me for while.
I can see why your good friends with Mischelle. She's clearly an amazing and very strong woman.
Thank you, Lene. Mischelle is my adopted little sister. I adopted her when she wasn't looking! 
Chelle has a blog now, Lene. It is: http://facetsoflivingwithra.wordpress.com/
V
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This article is very helpful for me to read right now - I'm not quite retired but heading there fast, and I have been fortunate enough to be able to work until I'm 62 (next month....and retiring in Sept). However, some of the concerns mentioned (steroids raising blood sugar) are a concern for me right now, walking that fine line between staying functional and staying within the safety zone. i don't have diabetes but if I'm not careful, it's possible I would be there - it was high once when I wasn't strict about the 12-hour fast before the metabolic panel tests. I also have a touchy liver, and now possible kidney repercussions; function dipping down now and then. And I'm also at the point where meds don't do what they used to, there's a lot I can't take (NSAIDS totally), and I am having certain functional problems that I'm saying, well, I may just have to get used to this and adjust my expectations, find other solutions. That's where it's at! Thank you -
Oh, Ellen, you do have alot to contend with, just like my friend, Mischelle. Finding the right balance with medciation and with our lives is a challenge, but I have faith you will find that balance. Thank you for your comment.
Hugs,
V
Hi V - I finally got tired of waiting for the referal from my rheumy to the pulmonologist who was nearer to home and went to the guy at Upstate Medical Center in Syracuse (150 miles away) as originally planned. He ok'd me to go ahead with RA meds, as far as my lungs were concerned. Then suddenly my foot got much worse (maybe the 3 weeks of Enbrel shots that I did out of desperation made this infection happen?). So I've had an MRI twice (one without contrast, one with, due to miscommunication between doc & hospital). It shows that I probably have a bone infection in the 4th metatarsal bone. But I don't totally trust their interpretation and will probably get a second opinion. In the meantime, the second shot of Orencia (no infustion, I refused to wait for my doc since I had the intro kit) dropped my ESR (SED) rate to SIXTEEN! It hasn't been 'normal' in 8 years, and was 39 the last time it was checked a month or so ago!. So the darn stuff sure does work - but it may have increased the risk of infection and I may have to stop until they figure out my foot. Always somethin'.....but We WILL GET THROUGH THIS! (However, it doesn sound like an Orencia infusion would have been a BAD idea, doesn't it??? :)
Thankfully, my blood glucose was normal - 96. not low but not too high either....after the first Orencia shot, I immediately dropped from 10 mg Pred to only 5. After the second shot, I haven't needed even the 5!
Hi, Ellen!
Sounds as though Orencia is helping you the way it helped me. BUT, have to see about that possible bone infection. That is serious, girl. I would definitely get a second opinion ASAP.
I have stopped taking MTX. Haven't told my rheumy yet...see her next week. A few weeks ago, I skipped my MTX because my stomach wasn't happy. I noticed I felt so much better that week and didn't seem to miss it at all. I did inject my Orencia...that is good medicine for me! Anyway, I skipped it again the next week and the next week. No ill effects so far. Actually, my RA sweats are better, I don't have headaches and the low grade sinus infection I always have seems to be gone. I will tell my RD when I see her next week and see what she says, but it appears I do better w/just Orencia. :)
Please let me know what you find out about that possible bone infection. If you do have an infection, you don't want it to get out of hand. It needs to be slammed down, and quickly.
Hugs,
V
Glad you are doing better with less!@
Will let you know what happens at this end....yeah, I won't be doing any more shots until I know what's going on...
I certainly hope they are wrong about that infection. If not, do what ya gotta do, girl. Then you can get back to your Orencia!
Hope you have a wonderful holiday weekend.
V
Absolutely ... should have called my GP yesterday to let him know, in case he wanted to start me on something just in case... will have to wait until Tuesday due to the holiday. I already have an appointment with a very good podiatrist (rescheduled from January when I had pneumonia). I'm hoping to avoid surgery but if needed, I'm told he can do it, or I will go back to the specialist who did my ankle surgery. Choices...will ask my GP for advice on that.
Did you talk to your GP today, Ellen? Any news on the possible infection?
V
No I haven't, but he will be getting the reports and his office always contacts me if they want to jump in on such things ...he's also very hard to get through to by phone the first day of the week .... But I'm seeing my rheum dr. 8:30 am tomorrow and I'm sure he'll have something to say. I'm not sure whether it makes sense to do anything until all the info is available. Since I've started taking it easier on that foot, it's not bothering me as much (on the other hand, my left knee is a pain!)
Will let you know more when I know more! I haven't had ANY temperature (fever) or even redness or swelling over the 4th metatarsal and I still wonder if their interpretation is correct! In fact, I dug out my old MRI wrist when I was first diagnosed with RA because it specifically mentions "edema in the bone marrow", a later MRI, and also 2 articles about MRI's involving RA - and gave them to the radiologist with the question: "Is there ANY chance that this is just my RA showing up in another location since I've been off meds for 6+ months?" We'll see... but thanks for asking!