Cleveland clinic | Arthritis Information

 

I won't ask for specifics here such as the doctors name, etc.  I would like to know however if anyone here sees a rheumatologist at the Cleveland Clinic?  My current rd had me on 100mg of pred a day, 15mg of mtx a week, and humira injections which I believe suppressed my immune system to the point that I developed shingles with cellulitis secondary to them.  My face still has the swelling and tenderness and now, even though the dose has been reduced to 70mg daily, the side effects are mounting up quickly.  Heres just a brief list of what I've got happening now:

I left Cleveland Clinic after 5 years - a mess.  Good luck. 

I had a bad experience with them once too 7 years ago.  Actually to be exact the last time I went there to see a rheumatologist was 9/11/2001 I kid you not.  The doc there and my old pcp here in WVa. where I live didn't communicate well.  I was on 20mg of MTX and it was killing my liver.  Not to mention I was not told at the time to stop the MTX when I had an infection and I ended up sinusitis for nearly 2 months. 

Maybe I'm better off looking elsewhere.  My parents used to take me to the University of Charlottesville in Virginia and they were terrific, but that was pediatric rheumatology.  In fact the doc there was responsible for a the longest clinical remission I've ever had with this disease.  I think it was almost 12 years without anything major. Why are you on 100mg of Pred.  I don't understand?  If it was because of the shingles, you're now over them but it doesn't sound like you're tapering.  Some people may have had problems with the C. Clinic but it appears you might need more help and care than your current RD is able to handle and it might be worth a try.   Do you have a primary care doctor?  Lindy I was on that much pred because the dose was based on body weight.  (I'm a pretty big guy)  It was only for about 3 1/2 weeks then it was cut back to 75...then 70 where I'm supposed to be now but I've still been cutting back and am currently at 60mg which WAS the highest I've ever been in my life and it's not doing much at all for the RA. I'm plannig on cutting it back even further too but very slowly.   The big dose was to help me out until the humira kicked in but I think it caused more of a problem than it helped.  I think that was just too much immune suppression going on for me.  Hi Bob, you don't have to be not-so-friendly but you do need to be persistent and don't take no for an answer.  I really support your decision to look for another RD.  Does any of the university hospitals in W.Va., Va. or Md. have a rheumatology department and clinic.  You might get a referral to one of them.  How about John Hopkins in Baltimore (I know there will be some screaming about that one) but I think your disease process and the amount of Pred. you're on is a great concern and should be assessed by either another RD or in a University setting.  Are you close to a large city or have other RD's available to you?   LindyYikes my dad goes to the Cleveland Clinic.  Although he sees an endocrinologist there.  I'm glad you posted b/c I was considering that instead of Vandy but Vandy is closer and I'm going to stick with them...had a good experience there...

In WVA you've got several excellent choices within a days drive

Buckeye, thanks for the list.  There's also Georgetown U in D.C. LinB2008-10-06 09:44:02Right now I go to the West Virginia University Hospitals physicians office center.  She called me today to check up on me and to tell me that she would really like to see me asap.  She also gave me the ok to start cutting back on the steroids immediately.  Of course I've been doing that anyway, which I told her and she said that was good that I thought to do it. 

Bob

I  loved my rheumatologist who is now at the Univ of Pitt.  If you want his name PM me and I'll send it to you

Hi Bob,

If you have a doc that listens that's half the battle.  And showing your not-so-nice side doesn't always work or it hasn't gotten me anywhere but hopping from doctor to doctor because I then lose trust in that doctor.

Have to be careful with the prednisone and not taper too quickly.  You can also become prednisone dependent.  Mention to doc about you wanting to come off the prednisone.  Prednisone is highly effective antiinflammatory but lots of side effects and in my opinion highly addictive but because it isn't narcotic no one seems to care even though the side effects can be life long..  I am on 5 mg. I was prescribed 10 mg -- only 20+ mg seem to help so as you can imagine it really isn't helping.  the face is swollen even on the 5 but was more swollen on the 10 which is why I went down to the 5.  I am in between RA treatments at the moment or I would stop the prednisone altogether.  after awhile it causes me to retain fluid. I can feel my feet and legs swelling, about 10 pounds of fluid. so you may have to see the doc sooner than the monthly appt.  I also get the pcp and RD bouncing me back and forth like a ping-pong ball too.  It makes me feel I am getting worse due to medical neglect. You really have to be your own patient advocate.

Yep buckeye, you got me, it was the Florida branch of Cleveland Clinic who failed to catch that I had RA and that right side pain I was having was acute severe pancreatitis attacks, and my mother died of pancreatic cancer, which is hereditary.  Yep, it was the Florida branch, does that make it better, or my post doesn't count?  And by the way, its now closed. justsaynoemore2008-10-07 03:42:35JSNM I only pointed out that you had visited the Florida branch because Bob would be dealing with different doctors and different facilities than you had if he visits Cleveland Clinic in Cleveland.  So be snippy all you want but no your florida experince really isn't pertinant to his potential Ohio experience.   
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