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Hi all, what a nice cold windy day here in North Carolina... even some blowing snow in some areas  brr don't get along with cold weather.. I am on orencia and have been for 17 months was working well in the beginning then he changed me to arava and off mtx gone down hill ever since. Been in a flare since about July in august my sed rate was 83 had a flared achillies tendon and did mri to show it was a tear. I got the orencia treatment plus medrol and pain iv. Then had several emergency visit for steroid injections in my back with terrible back pain. Then had orencia again in sept. now in oct had treatment of orencia and sed rate was 89 so he has brought me in for medrol iv's 3 altogether. I also started back on mtx. 1 week of it so far. My question is how can my sed rate be that high with all the meds I take to control it? I also take plaquenil highest dose relafen highest dose was arava now mtx and folic acid. plus have had several injections in these past months. It just doesn't make sense to me it seems something is not working. I have alot of joint pain but not swelling and redness. He looks at my hands and says oh looking good but then has to call me back in with a high sed rate count. I know that I have just not felt good in months really me 1st big long lasting flare. I am so fatigued I can hardly handle the days. The iv gives me energy makes me crazy then goes away and I crash. Any advice or info on inflamation or sed rate numbers I am told a normal is 20 or below for women. Thanks why were you taken off the methotrexate?  you're right something isn't working and if you were doing well on mtx then it seems that arava may be the problem

I went off the mtx because I was having so much trouble mouth ulcers but I still have them even with orencia and arava. I do take folic acid but I still have them real bad. I am also having so much trouble with my back and achillies tendons and have been reading abot AS wonder if he has checked my blood work for that. I am looking forward to maybe the mtx kicking in and helping me. I also have discussed changing to remicade or rituxin. Hey Laura,
  This must be something that is going around in NC, I am currently my Rheummys worst nightmare with everything showing out of control and nothing to control it. He even had me go to another lab to see if they could see somthing else in my blood that his lab didnt.  I cant believe how many meds they have you on, sorry you are having such problems with them, I am sure you will find the right one.  I am just west of Charlotte and this cold weather has kicked my butt too.  My Rheummy gave me a dose pack yesterday to try and get things under control but BP went to 172/82 today and they had to take me off.  Good Dr's are very hard to come by in this area, are you having the same problem? I am getting ready to start Remicade, hopefully next week. I have talked with several people that have had really good success with it.  I think there is a right med out there that is right for all of us, it just takes time (and lots of awful side effects) to find it.  Take care---Linda
oh my...... you are having a tough go, arent you?  I hope the MTX kicks in andhelps everything work better!!ncpalinda, I am in North Wilkesboro where are you? I am going for an iv of medrol in about 30 minutes and I absolutly dread it. Oh it makes you feel good till it wears off then my pain in my achillies comes flooding back and I just rather not. I am too the point I want to stop everything and start new. I want to find something that works without making me crazy. I slept longer that 4 hrs last night and it felt great... Well on my way to statesville. Thanks for the replys.

Laura, I am in Gastonia, just west of Charlotte.   I have never heard of an IV medrol, funny how different Dr's do totally different treatments.  My last Rheummy would pop me with a Kenalog shot every time I flared--it was wonderful, but this new Dr doesnt believe in it so I am stuck suffering.    Does the Restatsis work for you?  I keep loosing my punctal plugs and they mentioned it but said it may not work if I dont produce very many of my own tears.  I went the other day to have them cauterized but the Dr stuck in another plug instead.  Another Dumb Dr.    I wonder how much these Dr's really know about what we are all going through.  I think we are pin cusion guinea pigs most of the time.  Hope your IV helps and hope you get some sleep

 
Linda

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