Has anyone been put on Adderall or Ritalin for these side effects? My nurse wants put me on Prozac. I know that I am struggling with this just as all of are on here. It is a lot to consume and juggle your everyday life. I don't feel I am manic depressive I know that I am emotional about having PBC. After doing some reading on these two drugs, I was thinking could they help with multiple side effects rather than one pill that will only help with depression. If anyone has thoughts, I would love to hear them. At this point, I feel like a walking drugstore. My daily pill regime is crazy. I truly have no desire to eat because I full from the amount of pills I take. Not sure if anyone battles constipation like I do but the struggle is real. I am not on any opioids just Linzess, metformin, urso, 2 supplements (Truvision), Weds/ b12 injection and Vit D w/ calcium supplement, urso (dose 2) then my as needed meds for nausea, laxative, sleep meds. Recently, I have been having some issues with focusing or just complete brain fog from the fatigue. I haven't been sleeping well. I have got to get this under control because my workplace doesn't not understand I am not making mistakes on purpose it just completely miss stuff that I don't feel I did before.
Your thoughts on this please
Connie
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cfsummerford72
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At least you have yur doctors attention and will prescribe something. My Dr isn't paying attention to my brain fog fatigue I have to look for a job soon but I know better. I'm not in a good place especially since I started azathioprine. I'm only taking prednisone, azathioprine and Urso. We are weening me from prednisone. Now I'm taken 20 mgs. Next week I'm supposed to go down to 10 if my bloods are ok.
Haven't been prescribed anything but prozac. Which im refusing looking for other options. You needs to speak up to your doctor about your concerns if you dont get results find another doctor.
Oh believe me I completely understand. No sleep at night try to hold a job during the day. I make mistakes not on purpose. I get put on 30 day probation. I printed out some info to give to hr and supervisor one to protect my job two so that they would have some idea of what im dealing with. Did it help probably not
Until we all or as many of us as possible make stand and demand help if help is available such as medication that won't screw us over more we won't get it. We need to work or we need financial assistance. Most of these drugs filter threw our liver. In all honesty I believe we are screwed badly if we don't have a kind hearted wealthy spouse to take care of us. The USA could care less about us. We need help and fast. I sleep now at night and during the day. I'm home alone with 2 kids.
I agree that until we make this condition known. No one will under what its like. As for a rich spouse, I am single never married. I have one son thats 21. This past year I finished my third degree only to be told the same month I have this disease. In so many ways grateful that i have these accomplishments but sadden as well. Wait til you hear an employer say were do you see yourself in 5 10yrs. In my head im screaming alive or healthy i hope but i just smile and play this foolish game. Im thankful i dont have a husband and my son is grown but i wouldn't want to be a burden to anyone. I know it sounds harsh and in a bad place but reality is go find some at the end with cirrhosis. Its not a pretty picture. I apologize to any this offends but we are adults. This group is a life line to many of us because some of dont have support in our lives.
We shouldn't have to get to end stage to get a liver. We shouldn't have to be knocking on deaths door and go through all the stages and different autoimmune diseases to get help. We already have no quality of life when we are struggling to stay awake. There has to something out there to help us with fatigue. That is my only symptom and most of us. I'm going through the side affects of azathioprine and prednisone but that should pass. I had fatigue long before I knew that I had this. I just thought that it was menapause
Just yesterday i told my husband i felt like a burden. He is such a sweetie and told me to stop it. I know how u feel, because alot of times so tired i just put ear plugs in and lye down. Good thing i have a gracious husband who understands.
You dont have the itch? I itch all over even inside my ears. I wear contacts and im constantly taking them out bc my eyes are very dry. My back and legs drive my bat s@ crazy. The urso really hasn't helped that. I know this sounds crazy but i feel better when im regular. It seems like i dont have as much abdomenal and lower back pressure and pain. Do you have joint pain?
I had a rash in my ears and scalp. I went to the dermatologist after trying different things. In my head didn't itch but ears a little. She prescribed creams for my ears and scalp. The ear rash went away with cream. But the scalp didn't. After diagnosis and was prescribed prednisone it went away and didn't return. But fatigue is my bothersome symptom. I get prickly but nothing to be concerned about. fatigue is my only issue. I'm ready to start thinking about taking matters in my own hands and take a vitamin on my own. My Dr made it clear that he didn't want me taking vitamins that he wanted my immune system suppressed to get me into remission with aih.
I'm sorry but this is bull shit. I'm doomed. My Dr said that he wants to wait until my prednisone is lower. What does he consider lower
No joint pain. No pain but in late sept of last year I started going to the dr for back ache. But everything is fine with me. Fatigue is my thorn. Some days I get flu like symptoms and nauseous cause of the azathioprine. But so far today I'm ok. Just fatigue this morning
Wellbutrin might be an option. I was on it for awhile and was not tired during the day. I'm not on it now and I have to nap every day. It helps with focus too but is not a stimulant like adderall. I have pbc.
There is a strong antibiotic that is for the brain fog. I'm nor home at the moment or I could add the name of it. The brain fog isn't dis to the fatigue, it's caused from the amount of ammonia in our blood due to this disease. It affects the way our brain functions. The antibiotic helps break down the ammonia & helps concentration. I will add the name of it when I get home this afternoon. I can remember that it is 550mg & I take it twice daily. Wait, luckily I have a empty bottle in my purse lol. It's called Xifaxan. Unfortunately, I too am in search of something to help this awful debilitating fatigue. My heptologist tells me that it's just part of PBC that we have to learn to deal with. There's really nothing out there that helps much.
I just looked it up. The brain fog part sounds great. I dont have diarrhea tough i have severely constipation. I am on meds for that to keep from becoming impacted.
I was on short term disability because of the fatigue. Nothing really helps. I was offered early retirement and took it, as I really was unable to work. I have the itch sometimes.
I am not near retirement so i have no choice but to work and deal with the side effects. I am becoming more of an advocate. No one knows or hears about PBC. So every chance I get im talking about it or printing out information. I had a dear friend say to someone is she drinking heavy again? I was furious. I responded by saying no i have stopped drinking and i never drank anymore than uou did in our young adult years. Please educate yourself notjing could have prevented me from this. It was meant go be in my story.
I'm far from retirement age as well but recently had to resign from my job due to Dr restrictions. This is truly not by choice. This disease has taken job #2 in the past 5 years. I didn't see any other option but to file for disability. Now I'm playing the waiting game. I always have had a job. If my claim is denied we're going to be in a very very tight budget. If I push myself too much I'll end up in the hospital for at least a week. It's sad & I hate this for us all. I'm still waiting on the Ocaliva. I was supposed to start on it last month. I apologize if this sounds like a "cry baby"session, just had to get that out there. But honestly, it is what it is.
Cry baby? It's ok. This is horrible. We have lives to live and it's all taken away. I'm on Disability. I don't work.
But somehow my family thinks I enjoy being bedridden. Laura gets to 'sleep all day,'
Yeah you stay in bed for a year Dad. I wouldn't rather be out in the world working and not giving away pieces of me every time you blame me for THIS?
I'll be the cry baby today. Lol.
Staying home because you're sick is a job. You don't get paid and nobody but us will applaud you.
Will any one our there look at us and see what's happening? No. You're so lucky you can stay in bed all day. GET OUT OF MY ROOM..,and could you get the light off please??
Did I mention I recently decided not to be a pig trough for emotionally abusive crap??
I completely understand where you're at. A healthy person will never understand having to think every action through & what consequences they will end up with. A healthy person can just live with the freedom of not having to make choices for every minute of every day. Us PBC'ers have too!!! We haven't any other choice. Im not sure who all saw the post with the link butyoudontlooksick.com, but it has been a huge help in explaining our lives & how we must think of everything before acting on them to a healthy person. Go to this site, then click on the Spoon Theory. I guarantee you cannot get through the article without a tear in your eye. It's written by a lady who suffers from lupus. But it is the same for most of us who suffer from a invisible disease. Not only do I suffer from PBC, I also have fibromyalgia😒. Among other issues. We need emotional support from those who are closest to us. I've been waiting four years to see that from my other half. If I heard him correctly this morning, I swore he said he'd take me to my next EGD. I'll believe that when I see him sitting with me in that office. I go in tomorrow bright & early for my follow-up EGD. Musty make sure the varicies that were banned heal properly 🙄😒.
Stay strong & we all have each other regardless how our family & friends seem to think❤️
I am sorry and I dont think what you're saying is cry baby session. I feel blessed that ive gou d this group. Only we know what life is like living with pbc. I can explain it until im blue in the face but i see the looks that stare back. Either they dont believe this disease can possibly be that bad. I hope you hear good news soon.
I was on it for a long time. It worked great at first. Then I needed more and more and more. It didn't help the brain fog it actually made it worse. Then there is the inevitable crash because you're basically taking speed.
Don't be ashamed to try it. Just be careful. Use it sparingly. Don't make a habit of it, that's all. But I felt like my old self at first. I don't regret it. I just took too much for too long and it stopped working. And yeah...keep it in the medication cabinet. Don't feel guilty or afraid. You have a horrible illness. It's your right to try any thing you wish. Just don't be a drug addict. You may love the energy Adderal gives you but not the speed effect that kind of makes the brain fog worse. Or the crash. But it wears off...you're fine!!!
I understandthe brain fog, its horrible. My liver specialist has suggested a stimulant. So i go to my GP this Tuesday. She said ridaline, but my GP said no??? Makes me upset. But see what wiil happen. Lot of people do not understand this disease, it awful. I couldnt even work any more. Sometimes i tell them to look it up. My dear sister finally looked it up after 2 years, and now understands. Good luck..
Understand completly. Please dont let them think prozac is the solution been down that road. I am on prozac and contine to feel just ss u described my specialst suggested ridaline to my GP and now my GP wants to see me this Tuesday. Said he dosent feel comfortable giving me this drug. Im about ready to get another GP. He cut me off of pain pills because i refused to go to oain management. I showed him the pills and how much i had left, so im def. Not abusing them. For having also fibro, and a few other things i think i do okay. But foe years ,they would say oh your just depressed. Ya, depressed because i feel so rotten. Dont give up, ther has to be something to help us.
I've been on prozac, since i was 18 years old, I am 64 now. That is the only antidepressant that wks for me. I have tried every other ones thinking I'm burned out on prozac and land back on prozac again because the others either made me sleep all the time or very aggressive. The last one i tried made me very aggressive to where i was so rude to my husband. That is not me at all. Prozac will either work for you or no, its worth a try.
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due to Dr restrictions. This is truly not by choice. This disease has taken job #2 in the past 5 years. I didn't see any other option but to file for disability. Now I'm playing the waiting game. I always have had a job. If my claim is denied we're going to be in a very very tight budget. If I push myself too much I'll end up in the hospital for at least a week. It's sad & I hate this for us all. I'm still waiting on the Ocaliva. I was supposed to start on it last month. I apologize if this sounds like a "cry baby"session, just had to get that out there. But honestly, it is what it is. 
Anyone else have PBC and RA? 
Bathroom issues and Urso
scared the urso will make me gain weight
Urso - Hair loss and weight gain...
