Serious Concerns about medicaton I am on

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judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 10/23/2006 7:45 PM (GMT -7)   
I have just found out that a medicaton I am on is matabolized in my liver and may be causing me some of the symptoms I am having (staggering, feeling slowed down, sleeping a lot. The medicaton is klonipin. It is an anti-seizure medicaton, but is used to treat bipolar. My psych.  doctor talked to me about weaning off it because if the liver is sluggish it stays in my system much longer and can build up, and cause me to be groggy all the time.  I don't think there is any danger of me overdosing. I take 1mg. at night. I have a tolerance to it, but I want off of it so bad that I refuse to take more. And, I  need to take as little as possible from what he told me. I dread the withdrawl. I've done it before and it is horrible. But, it couldn't be any worse than the prednisone. Maybe doing it at the same time will be the best.  ?????
 
I am wondering why my GA doc. didn't catch this. Then again, I may not have told him that I was on it.  Doctors frown when you are taking a benzodiazipane. It worries me that doctors don't give patients enough info when we start out with all this.  I should have received hand outs, a diet, foods to avoid, drugs to avoid, ect. It makes me mad.
 
Oh well.. I have ranted enough.  Thanks for listening. Does anyone have any experience with this? 
 
Thanks,
 
Judy
"Hope is seldom found in the things we can see;it is the sweet fragrance of grace."

             

 




wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 10/23/2006 8:10 PM (GMT -7)   
hey judy ,my hubby is on klonopin, he twitches very bad when he sleeps,,wakes him up,,he has been on them for about 3 mths now,,,the twitching started after his heart attack,,,,so far they have not been bad for him,it does help with the symptom,,,his drs have not said anything about them being bad for him and all his drs know all his meds,,,,he carries his list to them each time he goes. as a matter of fact,his regular dr is very careful about what he gives him so it doesnt make his liver worse,,,,,the strange thing is,for pain he cant have tylenol,naproxen,vicadin,ect,,,and they have said the only 3 things he can have for pain are,,,morphine patches,oxies,and some kind of nasel spray ,,,the morphine patches didnt work too wel for him so he is now on oxies when needed for pain,,,sorry your having such a rough time,hope things improve soon for you,
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 10/23/2006 8:55 PM (GMT -7)   
Hi Trish,
I'm going to post this link to an article I read earlier. Question his doctor about taking it. I wish I had abeen questioning my earlier and doing more research.

http://www.newswise.com/articles/view/524381/

Thanks for your encouragement.

Judy
"Hope is seldom found in the things we can see;it is the sweet fragrance of grace."

             

 




Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 10/24/2006 12:20 AM (GMT -7)   
Hi Judy,
Hope the withdrawal isn't too bad. Could be good to withdraw the two meds together. Kill two birds with one stone so to speak.

Keep questioning those doctors. I think they actually like to see patients taking some responsibility and not just accepting everything.

I'm still looking for the Prednisone - adrenal gland article. We have been away for a family wedding - last five days. Things should get back to "normal" (what's that?) today.

Take care.
Marg
 


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/24/2006 2:44 AM (GMT -7)   
Hi Judy;

A lot of my clients are on klonipin and are bi-polar and share the experience of some of the symptoms that you are having. The sluggish run down feeling. Not seeming to get fully awake even after being up for several hours, etc. I can imagine that since your (our) livers are not functioning at fully speed so to speak that it would delay it leaving your system in the amount of time that it would take to normally process. There are seveal different alternatives out there for klonipin and other bi-polar medications. Have you tried different series of them without results? If you haven't I would suggest you talk to your psychiatrist about alternatives that may have a shorter cycle time in your system. Weaning off any medication is difficult, but I believe that the psychotropics due to there build up in the system can be more difficult than most. Is your psy doc one that spends time with you so that you can talk to him about your concerns? In my experience in working with them they sometimes rush people in and out without really listening to their concerns. Make sure he hears your concerns and lets you know what to expect with the withdrawl symptoms.

Good luck and stay wel. Will keep you in my thoughts.

Lucy

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 10/24/2006 7:20 AM (GMT -7)   
Hi Marg, Lucy,
Thanks for writing and listening. Marg, hope you have a good trip. Weddings are nice. :-)
I will keep questioning, always. If I had listened to my insticts years ago instead of waiting for a doctor to send me to a specialist, my liver woudn't be in the shape it is. I'm taking half the dose of my med right now, and it's not actually too bad. I know, like Lucy said, I'll have to switch over to ativan or something with a shorter half life and also easier on the liver. I've only been doing this for a few days, so any side effects won't start showing up for awhile with it being a long acting medication.
about the adreanal glands. I've been doing some checking too. I'll have to get back to you on it. I'm a little rushed right now. As usual, thanks for your support and friendship. It means a lot.

Lucy,
Yes, my doctor does listen. If he didn't, I would be up and out of there. lol.. I'm my best advocate.
I know that the klonopin does clause the side effects you mentioned but it's more than that. It's like double or triple, so hopefully the drop in dosage will help and won't be so difficult on withdrawl because of it leaving my system slower. Thanks for your input. I appreciate all of you all so much.
OH.. I just heard back on my lab from yesterday. I got an A good report card!! enzymes are still in the normal range. I'm down to 17 1/2 mil. on the prednisone. I always breathe easier when I get the results back on those tests. :-)

Hope you both have a good day.

Blessings and Wellness,

Judy
"Hope is seldom found in the things we can see;it is the sweet fragrance of grace."

             

 




frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/25/2006 3:19 AM (GMT -7)   
Judy;

Congrats on your lab report!!!!!! Can't all of mine to start hitting the normal range. You are so right that you have to be your own advocate and demand if necessary. I know that if I hadn't began to become "insistant" that the doctors here in my area would have just kept letting this go with the "wait and see" attitude that they had until they finally referred me to a hepatilogist.

Good luck on the reduction and switch over on your meds. I totally understand that it is worse with the liver problems than it is normally. Everythng else seems to be why would that be any different.....right. Let me know how it going.

Take care and have a great day

Lucy

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 10/25/2006 4:00 AM (GMT -7)   
judy,glad your lab report came back so good:) you deserve some good news! take care and hope you have an easy time withdrawing.
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 10/27/2006 12:44 AM (GMT -7)   
Hi Judy,
So glad the blood work results were good. I know that feeling only too well. How long do you stay on 17.5mg? Currently I am staying at each level for three months. Have been on 10mg for about 6 weeks now and all's well. Keeping my fingers crossed. I have not got lower than 7.5mg without things going haywire, liver enzymes elevated and return to bigger doses. This time it's going to work.

Trish, Hope things are going good with you and rick. (and that new granddaughter)

Take care.
Marg
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 10/27/2006 1:47 PM (GMT -7)   
marg,thanks for asking,,things arent too bad for now,rick has calmed down some this week,,,i hope it continues,,,ive had to really get tough with him and the way he treats me lately,,,,if theyd just hurry and approve his ss,,,,,,we are living day by day,literally,and its very stressful,,,,,,and he feels guilty im sure,but i told him we have to work together or we are not goin to make it through this,,,,,i cant be strong if hes pushing me down,,,the graddaughter is wonderful:) take care of yourself marge :Hugs:
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 10/28/2006 8:39 PM (GMT -7)   
Hi,
Thank you all for your support. Trish, I'm sorry you all are having such a hard time. How long has your husband been trying to get on SS? Thank God I had it for bipolar before I got sick with this.
I know if's not an easy thing to get when it's this kind of illness. Have they turned you down yet, andhave you appealed? I hope things lighten up for you all very soon.

Lucy, I hope you see your enzymes going down soon. What meds are you on? I'm glad you got refered. I wish I had sooner. URG.. that's a whole nuther story. I wish I had the energy to sue.
You're right about everything changing for sure. Everything I put in my mouth now I am afraid will not be good for my liver, and everything you get over the darn counter says (consult you doctor if you have ........... ,and liver disease. Geezzzz.. I get so frustrated.

Marg, I don't know how long exactly. He has been very vague and I have not seen him in several months. ( the doctor) I missed my last appointment a few weeks ago because of a family emergency.
I called to reshedule and I was told that I would have to wait for a cancellation. I asked should I continue the wean or stop here??? She asked him, called me back and said, yes, continue. I"m like..well, how often do I drop? I know he said when I hit 20 that it would have to be slower. I have been going slower anyway just because I am scared of a relapse and the side effects are horrible.
I've been doing A LOT of research on the internet about weaning from pred. and from all I have read, it should be like you are doing, esp. when you get lower like you are.

I see my PCP on Monday and am going to ask for a referred to a hepatologist. I think that is the best way to go since my liver is already very sick. I have piecemeal necrosis and bridging. From all I have read, even with the medication there is strong possibility that I will get chirrosis. I want to be ready for that and think already having a hep doc will help things out.
Do you all see hep. or a GI doc. or both?

Oh, about the klonopin w/d, I am doing ok. I have cut back a little. It will be slow just like the prednisone. I'm going to post some of the things I found on w/d from pred. and about Cushing Syndrome, which I think I have. UGH.. something else to deal with. Also, Marg, I've been reading a lot about Addison's disease. It's has to do with the adrenal glands not producing the hormone that Pred. replaces. Cannot remember the name of it for anything right now. It starts with a C, I know that.
I have a huge lump on my back and one on my neck on the right side, as well as red spots on my arms. They look like dots of blood. Does anyone know what that is?

Thanks again for the support. I appreciate you all!!


Healing and wellness,

Judy
"Hope is seldom found in the things we can see;it is the sweet fragrance of grace."

             

 




frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/29/2006 6:16 AM (GMT -7)   
Judy,

Hope they do refer you to a hepatologist. I see both a GI and a hepatologist, but it took over two years before they would refer me and I had to get so "insistant" (although they might say totally *****y). In this area they had sent me to every doc i think imaginable. My problem started with a loss of vision in my one of my eyes so I started out in early 2004 with trying to determine what had caused it. In that process they found my liver enzymes were through the roof. They first believed i had hep C and sent me to an infectious disease doc who ruled that out but had no idea what was wrong and he sent me to a GI. Even after two years my symptoms that I was aware of were extreme fatigue and liver enzymes that were at that time some hitting the thousand mark range. He honestly seemed lost as to what was wrong with me and scared me by telling me to get my life in order not miss my life insurance premiums etc. He finally sent me to Cleveland Clinic to a wonderful hepatologist, who is very patient and spends alot of time with me answering questions and discussing options. Currently I am on Urso and prednisone. I take 250mg three times of day of the Urso to aid in bile production since the ducts are damaged at this time. I am down to 10 mg of pred a day but started last April on 30mgs. I am not sure that it will stay at this level though I go back in Dec to Cleveland and he will determine at that time if it is enough to keep me stable. I hope that you have a hepatologist in your area that specializes in this disease. It is a total pain going five hours to a doctors appointment and having all your lab work faxed etc but it has certainly been worth all the hassle. He has been able to calm my fears about this disease to a certain degree and has encouraged me to educate myself about my disease and provided me with loads of information. Hopefully they will refer you to a good hep soon, it is amazing the difference it can make.

Am sure I have ran on long enough so will wish you all a wonderful day and positive thougthts.

Lucy

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 10/30/2006 3:34 AM (GMT -7)   
Hi Judy,
I think you mean cortisol. How up on these words we become when the need arises. Before my illness I hardly visited the doctor and laughed at those who researched health on the internet. And here I am, hours at a time, checking, checking, checking ... I aslo have noticed I have becomes a little like my mother, who passed away 9 years ago, dating things as before or after my illness. I used to think it was age that caused this to occur, but realise it is life threatening, near death experiences that change our ideas.

I guess we all just have to take it a day at a time, reducing our meds as our heptologists see fit and hoping things remain stable.

And there's always someone worse off than ourselves. A good friend of mine, who's husband died 11 years ago, has just been diagnosed with cancer in the second breast. She had the first breast removed five years ago and had a reconstruction about 18 months ago, which nearly killed her. (some unusual complications). Her sister died from breast cancer just after her husband passed away. She has been caring for her elderly parents. Her mum is in a nursing home and her dad became very stressed when this happened and had a nervous breakdown - he's in a psych unit at the moment. Don't you feel fortunate!!

Take care everyone.
Marg
 

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