Double Hip Replacement

[Joe]

I have had Wegners for approximately 3 years and was recently diagnosed with AVN (avascular necrosis). I will need a double hip replacement. This happened from taking high doses of prednisone. I am wondering if anyone has had a double hip replacement and if so, how did your body react with the wegeners? I am still taking prednisone and cellcept.

[elephant]

My sister had a hip replacement and she was taking 10 mg of prednisone and immunosuppressant at the time. She has no choice, she was in so much pain...she really needed that hip replacement and is doing great. She is now taking methotrexate and another immunosuppressant drug. She has RA. Infection was the main concern...the doctors will put you on antibiotics. Is your wegeners under control?

[Sangye]

Oh, no. Joe, I'm so sorry. My docs and I were sure I had bilateral AVN a couple years ago but it resolved. (Multiple MRIs were normal but I had classic symptoms that took over a year to resolve)

Any surgery can cause Wegs to flare. Do you have a Wegs specialist? Where are you located? You need to have the very best Wegs docs on your case, advising the very best orthopedic surgeons.

[JanW]

What Sangye says.

Is there any thought to getting you off of or reducing your pred (and maybe you are on a super low dose anyway). I was at the VF Symposium last week and that's what the researchers are really looking at in terms of it becoming standard treatment...trying to get patients off of pred as quickly as possible. I haven't been on it since dx (January 2010) except now to test out whether it would work on some ankle pain and confirm that this was WG related (duh, it was), and my doc isn't giving me anymore after I finish this course -- rather upping the mtx. I know this isn't an option for everyone, just throwing it out there.

[elephant]

JanW, I just saw my rhuemy yesterday and that is her thought exactly....she wants me off the prednisone and increase the Bactrim, then if that doesn't work increase the cellcept. The prednisone is causing me damage. She is worried about ten years from now. I already have a laundry list of all the side effects from prednisone....having cataract surgery ( both eyes) in sept.
JanW how fast are they trying to get their patients off prednisone?

[JanW]

They are looking at off pred in 6 months and off ctx in 3 to 6 (closer to three). Essentially, I think it would be accurate to say that they are looking at all patients to have remission induction within six months, if the drugs they are start taking immediately following dx are really working. Seemed to me that the starting point for a standard patient was 60 mg pred at the start of treatment (barring the emergent situations that many of you guys were in in hospitals, bleeding lungs, failing kidneys, etc. but that you would drop down quickly from there. The graphic they used was a funnel to give you an idea and the ctx was a smaller funnel. Their pred advice seemed to be extremely different than what is standard here, or, for that matter, standard for some patients at the conference. On the other hand, I spoke to a couple of parents of pediatric (now adult) patient who experienced damage to their kids directly related to the pred (osteo and not being able to come off of it at all -- adrenal insufficiency, I guess that would be called -- and they seemed pleased at this new line of thought.

My rheumy definitely treats it like he is giving out a heavy duty narcotic -- lots of discussion and no refills!

[elephant]

I am interest in the prednisone advice they spoke of at the symposium.

[JanW]

It's what I posted above.

[Sangye]

Elephant, are you asking how long they're taking to wean someone off pred when they've been on it long-term?

[elephant]

yes, i am.

[Sangye]

Look back at the thread called "Lessons Learned." That was the one I did when I tried to get off pred too quickly. It's got Dr Seo's comments about how long it takes. You might have to read the entire thread, since I think it got off track and then later I added more from Dr Seo.

[talentx7]

My docs at UCLA want carter off all meds by 6 months. Well, thats the goal at least. We are starting our 4 month, and 1/2 way there on the pred. And they said this may be the last of the ctx. That would be great if everyone can get off meds in that amount of time!! But not sure how realistic??

[JanW]

Six month and taper off was the prognosis that I was given as well...I'm pretty close to five months in and have had normal bloodwork for the last two months or so.

[elephant]

Thanks Sangye, I read it. I think I will cut mine in half ( morning and night) when I get to 5 mg of Pred. Right now I am on 7 1/2 mg.