Prednsione withdrawal

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Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 458
   Posted 9/21/2007 3:21 AM (GMT -7)   
 
 
Hi All,
 
Have not posted for a while but have logged on everyday to follow how everyone is doing.  I have been doing good my levels have been completely normal for 13 weeks and stable for 17.  My doctor in the Center for Liver Disease in Miami, however, still does not want to reduce my prednsione below 20 mg until my levels are normal for 6 months.  Then wants to repeat liver biopsy if no inflammation will begin to wean me down.  I was unable to take Imuran had a very bad reaction and she does not want to use cellcept since she feels it also has side effects.  She did said if I insisted she would consider going down to 15mg but no lower.  My question is has anyone noticed a difference in prednsione symptoms going from 20 to 15 in weight or sleep or anything.  If not, I guess it is not worth taking the chance since 20 seems to finally be working.  I have now been on prednsione for over a year and ready to jump out of my skin.
I am also worried about having another liver biopsy but my doctor said it is the only way she can be sure the inflammation is gone before she starts to wean me off the prednsione.  She feels sometimes the prednsione can masked the inflammation in the liver tests and does not want me to relapse.  Said a relapse of AIH would mean starting all over again with higher doses of prednsione.  Has anyone experienced any of this.
 
Jerry

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/24/2007 4:08 AM (GMT -7)   
Jerry

I am so happy that your blood work has been positive and levels have remained stable. I was also unable to take imuran due to side effects and have been maintained on 10mgs of prednisone for the past 18 months. I had my first normal liver levels in nearly five years this past June. I also am scheduled for another liver biopsy after the first of the year. HOever I did have a vascular liver ultra sound done last May that was able to check the blood through my liver and did not indicate any severe problems at that time.
I do understand about the sleep problems. Even at 10 mgs I sometimes wake up frequently during the night, have problems going to sleep, etc. As for the weight I initially gained nearly 20lbs when I was on the gigh dosages of predm however recently I have been juicing and have found that it has helped with the non-stop hunger thing that seems to happen to me. I have been able to lose 10 lbs so far and my levels have remained normal.
I will keep you in my thoughts and pray that things continue to go well.
Keep us posted.

Lucy

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 458
   Posted 9/24/2007 9:37 AM (GMT -7)   

 

Lucy,

Thank you much for your reply and encouragement and congratulations on your normal liver levels.  It seems that 10mg is giving you some relief while keeping your levels normal.  The weight thing drives me crazy I work our everyday and stay away from carbs but still the weight goes up and down I guess it is just something we have to deal with being on prednisone, since at least it is working for the liver.  Do they plan on redoing your liver biopsy to see if they can wean you down farther or to check on inflamation.  I have has mixed options on whether to have the biopsy done again or not.  My hepatalogist feels it is necessary to be sure the inflamation is gone before she start to wean me off the presnsione she feels that sometimes the prednsione will masked the inflamation and then when you try to wean it comes back worse.  She said with autoimmune if you relapse it is worse and then you need to go back to square one.

I guess it is better to be sure but not looking forward to another biopsy around the holidays but at least I did not feel anything during the biopsy because of the rug they gave me.  So many people say it is so painful but I did not feel anything for some reason the doctors do not offer the drug but the nurse told me to ask for it and it was great.

Thank again.

 

Jerry   

 


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/25/2007 3:52 AM (GMT -7)   
Jerry

My hepatologist has not mentioned weaning me any further on the prednisone since I have been unsuccessful taking other specific immune suppressants. He has talked about doing another biopsy to see how the disease has progressed. I didnt' have any problems with my first biopsy either, no pain or anything so hopefully this one will go just a smoothly for both of us. Prior to the biopsy, he has me scheduled for an enodoscopy and bone density tests in November. He is concerned about some kind of issues that develop with bleeding in the escophogus (I am sure I spelled that wrong), that sometimes occurs with either liver problems or crohns which I have also been diagnosed with. I had an ERCP done last year and that was really painful so hoping the endoscopy is different. Have you or anyone else else had one done and if so how was it?

Hope things continue to go well for you and will keep you in my thoughts.

Lucy

Jerry1
Regular Member


Date Joined Mar 2007
Total Posts : 458
   Posted 9/25/2007 6:41 AM (GMT -7)   

 

 

Lucy,

I have had a couple of endoscopes and no they are not painful you are out and do not feel anything.  

My doctor feels if I stay with normal liver levels for 6 months I have a good chance of staying in remission and being able to wean off the prednisone.  I hope that is the case but from what I have read here it does not seem like anyone has successfully weaned of the prednisone without taking something else in its place. 

 

Jerry


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/27/2007 2:56 AM (GMT -7)   
Jerry

Ihope that you are able to successfully wean off the pred and stay in remission, but I certainly understand that you are concerned. The pred has helped me feel almost "human" again after all the fatigue, body aches, well you know the rest and to take that away and worry that it could all be back would be frightening. It seems though that everyone responds differently with this disease and you can be the one to give us hope that it can be done.

Thanks for the info on the endoscopy. Am glad to hear that someone else has went throught it without complications.

Hope things are going well for you and good luck.

Lucy

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 10/1/2007 6:26 PM (GMT -7)   
Hi Jerry and Lucy,

Just read the Prednisone "weaning" posts. I'm down to 8mg now with the help of CellCept (I have had no side effects from CellCept - or at least none that I'm aware of. Blood tests every month are still close to normal. I have "flared" at 7.5 mg the last time I reached it. (about 18 months ago). My heptologist is keeping me at 8mg until March next year - that will be nine months. I long for the day when there is either no need for Prednisone or there is a replacement medication that has no side effects.

I had an endoscopy several years ago - didn't hurt at all. I was determined to stay awake but work up when it was over.

I had forgotten the effects of higher doses. The high energy levels and the lack of sleep. I have gained more weight since dropping around 10mg. I also found I have become quite depressed at around 10mg and needed medication (Lexapro) to fix that problem. I reached a stage where I was hardly leaving the house apart from work. Didn't want anyone around except my immediate family - and lost all motivation in my life. My doctor explained (or I read on some liver forum) something about the body taking over making again what Prednisone had been doing for so long - and this can cause some imbalances in the body. I can't remember what it was. Must do that research again.

Anyway. Good luck to you both with your gradual taper of Prednisone. We are all going to beat this disease.

Take care. Marg
 


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/2/2007 4:19 AM (GMT -7)   
Marge

Thanks so much for the encouragement. Am so glad to hear that you have been successful with your levels and have been able to manage on the withdrawl of your prednisone. I know you are excited over the prospects of no longer having to deal with all the problems that come with that med.

I am so glad that your endoscopy went well and you had no problems during it. I personally am so tired of tests. I also have a bone density test sceduled (one of the many problems of the pred) but I know it will be easy to get through.

Thanks for the info on the depression factor. I have never heard that lowering the pred can cause depression to increase. Makes sense though as would effect the chemicals in our bodies. You are right though we are going to beat this.

Continued luck to you and may things continue to only be better. Hope school is going well. Keep us posted.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/3/2007 1:23 AM (GMT -7)   
I've had an endoscopy and will have another later this month. I was given Versed or something similar, as I don't remember a thing...and no pain afterwards.

Connie

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/3/2007 1:32 AM (GMT -7)   
Connie

Thanks for the info on the endoscopy. Hope all goes well with yours this month. Will keep you in my thoughts and prayers.

Lucy
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