AIH Dropping dosage on prednisone - very fatigued

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judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/15/2006 5:06 PM (GMT -7)   
Hi all,
I have tapered to 2mg of prednisone this week. I am extremely fatigued,  wanting to sleep all the time, and aching all over like I have the ful. With my MD's premission I am going back up to 25 over the weekend and then back to 20 on Monday.  I experienced this when I dropped from 35 to 30 and did the same thing about going back up and then back down.
I feel like someone pulled a plug and every ounce of energy has been drained out of me.
How long does this go on? Anyone have any answers for me?  Does it get worse the lower you go down. I am grateful I do not have to work. I could not stay awake. It reminds me of the fatigue I had before I was diagnoised. I guess I got used to the "fake energy" the prednisone was giving me? Is that why I feel so tired?
 
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 9/15/2006 5:23 PM (GMT -7)   
judy,
    could be,,,,i know problems with the liver cause fatigue,and when my hubby was put on prednisone(for a rash caused by interferon treatments),,,he had TOO much energy,,,,,,,then when he went off,right back to the fatigue,,,,hope ya get some energy back and get through this bad spot
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 9/16/2006 12:22 AM (GMT -7)   
Judy,
I had no change as my dose was decreased. Felt exactly the same as I went from 60mg, gradually to 7.5 once and on two other occasions to 10mg. My blood tests indicated elevated liver enzymes, (at 7.5 and twice at 10mg) but I didn't feel any different. I was pleased I was having monthly blood tests.
Sorry I can't be of more help.
Marg
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/16/2006 11:50 AM (GMT -7)   
Heck, I feel that way all the time and I've not been on Prednisone. The excessive sleeping and fatigue are just part of my liver disease. Even though most of the cancer has been destroyed, the hep C is still there, doing its damage. I skipped a pain pill and Paxil the other night to see if I would have more energy or sleep less. Didn't make a bit of difference. I'm sure these meds have a half-life, but the way I feel, I do believe, is strictly from the liver disease.

Connie

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/16/2006 3:16 PM (GMT -7)   

Hi,

Thanks for the input, it's really appreciated. Everyone is different and in different stages of the disease. Before I started the prednisone, I had no energy whatsoever. At times,getting up, going to the kitchen to fix something to eat, mind you.. a frozen dinner lol and going to the potty,getting dressed, which I didn't do most of the time, were almost too much for me to do. I felt so tired. My favorite place was my pillow. The only thing that would give me a few hours of energy was sleep.

After I started  the prednisone I had tons of energy just like the doctor said I would. He has crhons disease and said he had been on it for years himself. He was right. I felt better than I had in many years. I was out nearly every day, doing things with my grandchildren, cooking, even cleaning which I detest.  This feeling, the withdrawl from prednisone affects the adrenal glands somehow. I'm not sure if that is what causes the fatigue and joint pan or not. But the fatigue is like the disease was before I started taking it. So it could be a combo of the AIH and the withdrawl, I don't know. If it is the liver??? I am wondering if I will feel this crappy after I taper down further from the 20 on down. I guess I'll find out. I'll just take it as it comes and pray for the best.

 

Be Well,

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 9/18/2006 2:11 AM (GMT -7)   
Hi Judy, Are you having regular blood tests? Poor liver function could be the cause of your tiredness.

I was almost hyperactive when I began Prednisone. I started about a hundred jobs at once and couldn't sleep because I had too much to do and so much energy. I think my body has become accustomed to the steroids. Or perhaps my decrease has been much slower.

hope you begin to have more energy soon.

I'm finding depression and weight gain are my main enemies at the moment.

Marg


 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/18/2006 2:44 AM (GMT -7)   
Hi Marge,
I had blood work done on Friday, and will find out today how they turned out. I still have the fatigue, but it is better. I rested a lot this weekend.

I was very hyperactive too when I started on the prednisone. I was on 40mg. and had tons of energy, weird mood swings, and could not sleep. I guess my body got used to it after a while.

I'm having some depression too, Marge. I seem to want to stay in and stay away from family, friends, church. I don't even want anyone around. I know depression only too well. And I usually can pull myself out of it with the help of the medications I am on for depression and bp2. But now it seems that my mind is following my body in being sluggish. Do you know what I mean?

I have lost weight since I have been on prednisone, but it was prompted by an onset of diabetes.
I went on a low carb diet and stuck with iti along with eating fewer claories. Cutting way down on the carbs,& staying on a dieabetic died . I have lost 23lb. I need to lose about 40more. I have just found substitutes for the things I used to eat that were not good for me. I eat lots and lots of sugar free jello, and sugar free cool whip too. lol.. It is a staple in my frig now. I also have found a low carb, low fat, and low sugar milk. I've had to change my whole diet but it has been worth it. I have been eating compulsively but at least it is low carb yogurt, jello, fruit, ect. I know it's just my emotions. When I am like this I eat, eat, and eat.

Hope you and I both feel better.

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 9/19/2006 3:41 AM (GMT -7)   
Hi Judy, It's good to talk to someone with similar symptoms and feelings. My depression is mild but some days I just want to stay home. I'm not having problems with seeing family, just friends and going out. and having little interest in the house, my work etc. But I think it's improving - at least the last two days have been better.

I am trying to work at my weight. When I went into liver failure (May 2004) i had gained about 15kg in the few weeks prior. It was all fluid with the failing liver function. I was admitted to hospital at 89kg and was discharged a week later at 73kg. I fought the urge to eat in my first six months on Prednisone, losing weight,and reaching 68kg by Christmas 2005. I maintained this weight for about 12 months but I have not had much will power since. And the weight has increased to about 78kg. I start well every day but just can't say NO at the moment when something nice is offered.
I'm really determined to reach a healthy weight soon. I have been looking at low GI, also have the Weight Watcher's Points books and recipes. Reduced fat is the only real way to do it. OK. I'll say NO from tomorrow.

Hope you are feeling better today.
Marg
 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/19/2006 4:25 AM (GMT -7)   
Hi Marge,
Good to get your post. I"m glad the depression is improving. I am feeling some better too. I am so tired though with tapering off the prednisone. I have been getting lots of rest. My body must just be in need of it. You said you had liver failure. Are you going to have to have a transplant or is it under control now? I can't remember your diagnois exactly. I'll have to back up and look at it.

As far as the weight is concerned, my daughter did well on Weight Watchers. I have done very well on the low carb, low fat diet. I try not to eat over 30 carbs per meal, 10 gr of fat and always at least 20gr of protein. They say balancing these are very important, and eating smaller meals every 3-4 hours, using a small plate, and of course portions. I eat a lot of veg. which I do like, but not potatoes or other starches. I eat a lot of green veg. and a lot of salads with fresh vegs. nuts, tuna, chicken, ect on top of it. I don't feel deprived. I treat myself once a week to something I usually do not eat that I really like.
I have found a lot of low carb things I like and low in calaries. I eat tons of low fat, low carb yogurt. There a lot of things out now with splenda which makes it nice. I cannot eat sugar with the diabetes.
I don't eat much bread at all except low carb. I can eat fish, bacon, chicken, lean beef, lean pork, ect. I just have to stay away from high carb foods. I was very surprised to find out how many carbs and sugars and in fruits and fruit juices. I have to watch that too.
a balance of carbs, protein, and fat have been the best way to loose for me, and of course watching the calorie intake. Doing without sugar, I'm sure, has been the big thing, also pasta, and bread.. which I dearly love, but I had to do this because of the diabeties and I had to lose weight. I am now at 192 and am hoping to keep losing.
Didn't mean to write so much. If you need support with your weight loss, I'll be glad to help you.

Hope you have a good day too,

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 9/20/2006 7:46 AM (GMT -7)   
marg :hugs: ,sorry your goin through depression,,,,,it can be a very hard thing to fight,,,,any chance you can get anti D's? whether or not you start meds for this,,,,,,keep busy,,,,,,,,maybe try a new hobby,,,,,,go get a make over,,,,,,,have a massage,,,,,anything to improve your state of mind,,,,,,love ya marg,,,,,let me know if theres anything i can do,,,
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 9/24/2006 5:18 AM (GMT -7)   
Hi Judy, Thanks for your support in my weight loss quest. I have been strong this week and have lost a couple of pounds. Counting WW points. Might fit into that dress for my nieces wedding in October after all.
Thanks for your support trish. I'm busy at work and don't feel bad until I get home. I'll think about anti depressants but I'd like to do it without if I can. I'm going to talk to the Chinese doctor about it. Who knows a needle here or there might do the trick. It's my sisters birthday tomorrow (she died in January) and I have been thinking about her a lot. you might remember she died of an autoimmune disease. Perhaps tha is what has had me feeling bad. Anyway, just being able to put it in writing and knowing someone is there to listen.
Talk to you soon.
Marg
 


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/25/2006 5:50 AM (GMT -7)   
This might seem so strange but I am so glad that I am not the only one that has experienced this extreme fatigue where literally I haven't been able to do anything, no house work or spending time with my children. Some days it felt like someone is slowly letting the air out of a balloon and I feel myself just sinking. Getting up and going to work is just totally exhausting. Even on the prednisone I feel tired but can't sleep and have difficulty staying focused. I just wanted to thank you all for sharing your experiences. Certainly makes me feel less like I am "crazy".

Lucy

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/25/2006 7:50 AM (GMT -7)   
Hi Lucy,
I see you are a new member. Welcome to our group. You will find lots of support in this forum.
I totally understand your exhuastion and You're not crazy at all. Would you be willing to share a little more about yourself with us? I hope so. I would like to get to know you.

Be Well,

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 9/25/2006 11:59 AM (GMT -7)   
welcome frustrated:) im glad you 3 have got together to share your experiences,,,,,take care :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!!!" 


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 9/25/2006 3:46 PM (GMT -7)   
Hi Lucy,
WElcome to the Forum. I hope you get the support you need here. There is always someone here to share you feeling with.
Marg
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 9/26/2006 7:25 AM (GMT -7)   
marg,
just wanted to say,im so sorry about your sister,,,it seems that holidays and special days like b-days are the roughest,,,Christmas is extremely rough for me now that my dad is gone,it was his favorite holiday,,,,,,,:giving ya a huge hug: ,,,i had meant to comment on my last post about this and hubby came in and rushed me and the thought went out of my head,,,,hope you feel better,
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 9/26/2006 3:40 PM (GMT -7)   
Thanks trish, I can always count on support from you all at HH. I'm going to the doctor today aboput the depression. It's not fair on my poor hubby. I keep crying all the time and he can't cope with it. I'll ask the chinese doctor as well. I see him today as well.
Getting my new spectacles today. Should look very smart tonight - if I don't have big red puffy eyes from another bout of seemingly "no cause" tears.
Marg.
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 9/26/2006 4:46 PM (GMT -7)   
im so glad your going to the dr about the depression marg,theres NO shame in taking them to get through a hump,and with the medical problems,im surprised you havent had this problem before,,,,,courage is getting the help when you need it,,,,maybe the chinese dr can help too. You will be surprised how much better you feel when they find the right rx to help you,or the chinese dr finds the right herb to help,,,:hugs: wish i was around the corner from you so we could visit,,,and i could give you a huge hug,,,,,,take care
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!!!" 


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/26/2006 8:34 PM (GMT -7)   
Hi

Thanks to all for all your hello's and replies. I feel so fortunate to have found others that have had some of the feelings and experiences I have had. This is all so new to me at this point After three years and 9 doctors I just recently got the diagnosis of AIH. Before the extreme fatigue hit I led an active lifestyle family. I have two teenage boys that were used to me doing activities/sports with them and it seemed all at once that I could do not do anything. Sometimes I think they resent this illness more than I do. I would really like to know more about each of you also. Do families adjust to this new lifestyle? Did it feel like you didn't know yourself anymore?

Hope everyone is doing well today and hopefully will talk to you soon.

Take care

Lucy

judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/28/2006 9:58 AM (GMT -7)   
Hello to all,
I've been running for two days and am realy feeling it today. I have reached the total exhastion point, literally.
Marge, I wanted to day to you that anti-depressent therapy is very helpful. I just read that a mdication call Cymbalta not only helps with depression, but also chronic pain. I can post the newletter if you want me to. I think it might have been from here actually so you might have already gotten it.
I so hope you feel better and that you are having success with you diet. I have really bee bad the last few days. I have gone to buffets and blue my carb and calorie in take, but now bath ont the program.lol.I weighed last night and had gained 3 lbs. Also, it is not a sign of weakness that you need to be on something fo depression, rather a sign that you are thinking not only about yourself, but others. Holidays are hard for many of us. I lost my mom the day after TG 9 years ago, and my hubby of 29 years, 16 months later. Bless you, Judy

Wheredidigo,
I don't know you , but would like to. I see you post and you are a good encouragement to all of us.
Thank you,

Lucy,
I led an ative lifestyle myself until about 3 years ago when I started having fatigue. IT got continually worse. I also have psoriiatic arthritis and it comes with extreme fatigue and lot of joint pain, and psorisis. I had a double whappy as I am sure lots of us do. My AIH was diagnoised early this year in March, just a few weeks after the psoriatic arthritis. I thougth I would sleep so miuch that I might now wake up. and then I still do not feel rested. After the prednisone, I was so energized, it was wonderful, but now that I am on a lower dose the fatigue has come back and I have to rest for several days to have a few good ones. I figure whatever it takes, along with God's GRACE that I will be ok with the changes. I have this good support systmem, as well as a Christian forum for chronic illness where prayer is a big part of it. But, as with us all the people on there have chronic ill ness.
I am 54, live in Louisville KY, have 3 grown children, am widowed, have a wonderful man in my life that is very supportive for which I feel really blessed.
Families do adjust to your illness. Look at it like this. You have always taken care of them. Now it is time to ask for help. It's humbling, but it's worth it in the long run to get to feeling better. I can tell you that the only cure for me from the debiliting fatigue was rest and sleep. Willie, my s. o. did a lot of waiting on me. Lucky for me that I am on disability and have not had to work. I have wanted to so bad, and miss it, but am unable to have the stamina and physical strenth to hold down a job.
Lucy, it does feel strange, making all these changes. It takes a while to adjust and it takes some acceptance on everyone's part. I was mad at myself, and my body. I had gone back to college when it h it me and I was working too and still have 1 teenager at home.

My best to all of you.

Be Well,

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 10/2/2006 6:18 PM (GMT -7)   
Hi Judy,
thanks for your support. I am feeling much better. Dr. Chen administered two "happy needles" into my ear during my regular acupuncture sessions. I have to leave them there for 10 days. Things seem to have improved since then. No more crying and I'm feeling more interested in things. It could be that I'm on school vacation for the next two weeks!! But I'd like to believe it's the acupuncture.
I too have blown my diet this week end. We spent the long weekend away with friends and I ate everything offered plus some!! Like you I have gained about 3 pounds. Back on the diet today. I have just under three weeks to fit into the outfit I want to wear to my nieces wedding. (October 21st) And I need to lose about 8 pounds (more would be better but a bit optimistic)
Take care
Marg.
 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 10/5/2006 6:06 AM (GMT -7)   
Hi,
I'm having a very hard time and have been for about 3 days. The depression and fatigue doesn't want to lift. Also, I am having a lot of symptoms of anxiety. I am still at the 20mg of prednisone, blood tests are ok, but I'm not. I guess this withdrawl is worse than I thought . My GI doctor's office cancelled my appointment Tuesday becasue of an emergency in my Doctor's family. They called back yesterday and rescheduled, and told me to bring x # of dollars with me. I am on medicare and I guess I owe some that medicare hasn't paid. I am so upset that they will not see me until then. I said I just don't have it all, but can bring part of it. All over 50.00. I am so broke right now. I'm trying to pay 5 or 10 a month to doctors that I owe. I go to 4. I just told her to no. I guess I will come when I have it.
So, I'm without my GI doctor until I decide to charge it on my credit card or whatever. I'm so upset.
I am on a fixed income, tight budget like you cannot believe already. Sorry for the gripping.

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 10/5/2006 4:58 PM (GMT -7)   
Don't apologise Judy. Let it all out. you often feel better once you have vented your thoughts. Sorry things are going so bad for you. Do you have family you could borrow from to cover the doctor's costs? Is there another GI who would allow you to use your credit card. In Australia we have medical centres where they "bulk bill" - this means the total cover is taken up by Medicare. Sometimes the care isn't as good as if you have your own GP but in an emergancy it's OK. It's hard when you can't earn enough because of illness and you can't pay the bills on what you earn.

Hope things improve soon.
Marg
 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 10/5/2006 6:26 PM (GMT -7)   
I"m glad you are doing better Marg.. I can't imagine having something stuck in my ears. .lol but if it works and I've heard it does, that 's great. It beats having to take drugs that can make you sicker than you already are. I hope the improvement keeps up. How are you doing with the diet. Let me know if I can help.

I looked over my bill from the doctor today and saw that I had made 2 payments within the last 4 months. Medicare does pay most of it. I still owed $40, and made my last payment in August. I usually make a payment when I go in. I left a message with the billing office to call me today, and they did not. I guess I will call tomorrow. If I have to pay it, I'll pay it, but I will write a letter to my doctor telling him that it would be in their best interest to write or call someone who is a currrent patient to let them know that they will be turned over for collection & not be allowed to come to their appointment unless they are up to date on their bill. I think it's just crappy. If it were hundreds of dollars and if I had not made payments in months and months it would be different. UGH.. I'm just upset. Thanks for listening to me gripe.

I've gotten back on my diet. I've started counting my carbs, fats and proteins again for each small meal. Today I felt better than I have in days. I think that had a lot to do with it. I haven't been doing the diet I started out with. If I eat every 3-4 hours a certain amound ot carbs, protein and fat, it is great for my metabolism and energy level. I've been neglecting to do that. I really can do it when I put my mind to it and I eat well.

Thanks for touching base with me.

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 10/5/2006 10:38 PM (GMT -7)   
Hi Judy,
Hope the payment thing works out. It's not the doctors often, just their officious secretarial staff.
I too am back on the diet but without much success. Counting WW points plus taking into consideration the low GI foods - still more weight gain. Just have this sneaking suspicion that i may be carrying fluids - hope it's not the liver function declining. I'll have more blood work early next week. I've been walking every day and one day this week had 9 holes of golf with my husband. We are in the middle of the school vacation in Australia.

Lucy. Something about myself. I am 58 years old (was 57 when I joined HealingWell- thus marg 57). I live in Sydney, Australia. I have been happily married since 1972 and have two married sons. (29 and 26). Both of their wives are Kate (which causes some confusion). I have a granddaughter who is five weeks old. I am a school teacher, teaching high school music part time at a local high school. My husband is semi retired - on half pay lomng service leave until October 2008.

My AIH diagnosis was 2004. My husband was very. supportive. My eldest son was not living at home. He and his then girlfriend coped well with my illness, visiting regularly and phoning often. My younger son and his girlfriend were living with us. He didn't cope at all. He didn't like what was happening and his way of coping was to ignore it. He would ask his dad how I was but avoided contact with me as much as he could. I was a bit upset by this at the time but I know he cared, he just was frightened to show it and very scared at what might be the outcome. For a few weeks I thought I might not last. Now, most days I don't even think about my illness. I just take the medication and do all the things I did before. Once the disease is controlled I'm sure you'll feel much better and almost back to normal.

Take care everyone.
Marg
 

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