Finally getting off Preds

[elephant]

Cofffelover- I was told by my Rhuemy today that she wants me off Prednisone and wants to try to wean me off very slow. She wants to increase my Cellcept because it is less damaging than the prednisone. So I start tomorrow 9mg of prednisone and if I start to show more sinus and ears symptoms then we will be calling the big Guns. I do see my WG specialist up in Cleveland Ohio in June. She thinks that if I am having symptoms then I am flaring(WG). So will have to see what everyone says about it.
So you might need a second opinion. It seem some of the Rhuematoligest are realizing how damaging prednisone is and want find other alternatives to replace the prednisone. I guess will wait and see. Trial and Error!

[jola57]

You are so right elepahant. We are the first generation of the new drugs, we are the trial and error.

[Sangye]

I'm grateful all of you who came before me, and all the courageous Weggies who volunteered to take ritux or Cellcept in the early studies. I'm not sure I'd be that brave. Actually, I'm pretty sure I wouldn't.

[Lola]

Don't know if I said this or not, but my Rheumy said he hates Prednisone almost as much as he hates Cytoxan - for the side effects.

[pberggren1]

I wouldn't be that brave either Sangye.

[Sangye]

Don't know if I said this or not, but my Rheumy said he hates Prednisone almost as much as he hates Cytoxan - for the side effects.

Yes, I think all the Wegs specialists feel this way. The lifespan of Weggies has increased dramatically and we're living long enough to be seriously affected by pred's long-term side effects.

I've been on 4mg since September. Most regular rheumy's would keep me at that, quoting the idiotic "It's what your body makes anyway." (Evidence to the contrary: 4mg has been enough to grow a huge amount of facial hair, swell my face, grow neck rolls and supraclavicular fat pads, cause wt gain, etc...) But my Wegs doc wants me off it all together.

What the Wegs docs know is that NO amount is safe. Sometimes there's no choice but I think the numbers of people being considered "lifelong" pred users is probably shrinking.

[Sangye]

I wouldn't be that brave either Sangye.

Okay then... All cowards please form a line to the right.

All courageous ("I'll take any drug at any time") Weggies please line up on the left.

[JanW]

Agreed that regular rheumys (and pulmos, and GP, etc., etc.) think that there is a base level of predinose at which you will not be permanently affected. I am living proof that this is indeed not the case -- and I wouldn't have been so quick to ask for it several times had I known what it was going to do to my bones over the (not-so-very) long term.

I wonder if there will be more people in the future, like me, that if they are not experiencing serious or life threatening affects from WG, are not even started on this drugs as a 'first line of defense.' My doc has several WG patients that have not gone on steroids for flares, whom he says are doing fine. My WG ENT didn't bat an eye when I said I was not on steroids and in fact had stopped mtx in anticipation of the surgery and because of the liver enzyme spike. There seemed to be no feeling that the lowering the inflammation in my case was an emergent matter, particularly because I am so closely monitored (blood work and physical exam).

[Sangye]

Jan, I have it in my head that your inflammation levels are fairly normal. Is that true? If so, no wonder they're not anxious to put you on pred.

[JanW]

No Sangye, not so much. ESR, C-RP, and RA factor all significantly high (like double the normal values), P3 high also. However, clinical symptoms would have it appear that I am a VERY stable WG patient. Over the past five years I had worsening stenosis and about a year ago I started developing the saddle nose. During last spring, when I believe that I was having a flare, I had some nasal crusting and some pain, but certainly nothing like you all have described. With the warmer weather coming on, my nasal symptoms have all but disappeared. My primarily, really my only symptom that is bothering me at this point is my ankle swelling, which is a significant barrier in terms of mobility -- however, even though my doc and I now think there is WGs related, it's not a classic symptom, so you can't really say that you would agressively treat because of that. I have no fatigue, no swelling elsewhere, etc.

I'm not sure if my doc thinks that my numbers mean I should feel sicker -- but certainly all of my numbers point to widespread, systemic inflammation.