Linzess and extreme fatigue

[Cpromiset]

 

Hi I’m new here. 

I just started Linzess this morning for my IBS-C/sluggish colon. It’s been years and now for the last 8 months I can only go with a gloved hand and removing the hard dry balls of bowel myself. I’ve been taking magnesium every day, but it stopped working. I finally gave in and tried psyllium husk and miralax yet again.....but nothing. I’ve stopped all carbonated drinks and stopped taking most of my medications. I also have a perineal prolapse. 

I’ve tried not to take too many laxatives in the past as to not be dependent, but at least they would work when I did use them. I don’t know why they don’t work anymore.

I can’t really “push” anymore. It’s like all those muscles are asleep and I just can’t move anything. I’m wondering if my Hysterectomy has caused this somehow. When the uterus is removed, your other organs settle in the space where it was.

So I went to a GI again and she prescribed me Linzess. I took it at 7 am this morning and woke up at 10am and ate. Felt some slight movement and the need to go, but still had to manually  remove what I call the “rabbit pellets”. Then....fatigue and weakness hit me hard and fell asleep and woke up and I feel SO incredibly tired and tranquilized. I now feel no need to go at all. It’s been 6 hours since I took the medication. 

I can not take this during the weekdays when I work because I’m a medical courier and drive 260 miles a day. I can’t drive feeling this incredibly tired. And what if it starts giving me diarrhea? It’s not like I have a bathroom at the ready, most of my driving is backwoods country/farm land.

I’m frustrated. 

Is this a drop in blood pressure or just fatigue? Or a combo of the both? What if I took it at night? Anyone else have this intense fatigue and did it go away eventually? 

 

Thanks

[Jeffrey Roberts]

Welcome to our community.

Thanks for your very detailed story.

I'm really not sure about the tiredness and fatigue. I have heard from others that say to take Linzess close to when you eat as some have been told that it works on similar receptors to eating and it will help with a spontaneous BM. My doctor told me that I might experience D initially with Linzess, but then it settles down.

I find that if my C is really bad and I haven't gone in a while that I get very sluggish. I wonder if things are changing and that's what is causing this.

I would keep up the dosage for now and see if things change. I suspect they will.

[Anne]

I've been taking Linzess a few weeks now. I'll have violent diarrhea where I run to the bathroom 10+ times one morning, then nothing three whole days, then repeat. I'm also on an antibiotic. I've gone from pain 100% of the time to 80% of the time - so slight improvement.  I'm sticking in there a while longer - maybe it takes a while for it to settle in/down?  (Thankfully working from home right now due to the virus...)

[Jeffrey Roberts]

Anne,

 I have heard that it may take time for Linzess to settle down. It does seem to give diarrhea initially.

[TaLea]

I've been taking Linzess for a little over a month now and I've recently started experiencing the extreme tiredness, fatigue and sedated feeling. I thought it was because I had a busy weekend, but after reading the above post of someone having the same symptoms, I'm wondering now.

[Laura201]

I’ve been on Linzess since January’21 and the tiredness is only getting worse. I’m glad to hear I’m not alone in this but it’s working for me most of the time keeping things moving so I’ll have to learoto live with being tired. I foot odd it’s not listed as a main side effect. 

[Kfitz]

I have been on Linzess for several months. I frequently suffer from extreme fatigue..some days I am okay and other days I feel as though I cannot wake up. With that being said, some days I take the Linzess and some days I completely forget to. Moving forward, I am going to completely forget taking Linzess. There are many other options out there. I am also surprised that fatigue is not listed as a side effect, and am quite upset, as I would have stopped taking it a long time ago. 

[Kay M.]

Thank you all!  I've been taking Linzess for 1 week now and the fatigue is a bit much right now and I also wish they would add that to the side effects,  I used to have to take a sleep aide to go to sleep at night and now I don't and when I get up the next morning I'm so tired and sluggish.  I'm not sure how long this is going to last.

[Shan]

I am going on day 14, day 1- day 10 dosage 145 mcg. Day 11- 14 290 mcg. I have headaches, migraines the last 2 days and horrible fatigue, with muscle weakness. No diarrhea, stools every 3-4 days, still hard, small amount, painful cramping.

[Natalee N]

Thank you all for this post, I’ve only been taking LINZESS for a few days and the tiredness, fatigue and sluggish feeling are unbelievably! I’ve read the entire medical inset and research about this medication from development to trials to use and nothing mentions fatigue or tiredness!!  it has already helped with BM but I can hardly make it to work or function at work through out the day. Once I do get home all I can do is sleep,  It’s the only thing that has helped me in almost a year !  I really hope this side effect subsided with time, giving it another week. 

[Hodinator]

Hi! Thought I would weigh in on the fatigue issue. Diabetic neuropathy is responsible for slowly destroying every organ in my body including my brain since I was diagnosed with Type Two Diabetes in 2001. The only organ not affected is my eyes. I truly empathize with anyone who is suffering from Gastroparesis because it is a very long and very difficult road.

Like everyone else, I have tried everything. The last week or so has been a living hell. I have been taking Linzess for a year. At first it was like a miracle drug and I got instant relief in the form of explosive liquid diarrhea. Yay! I'll take it! However, emptying would become inconsistent and many times I would take it and nothing would happen at all. Bummer. When this would happen, I would take Ducolax softeners that night before bed. This worked well for a couple of months. Then, last week, I woke up after the Ducolax, took the Linzess,and proceeded to drink my usual half water, half prune juice mixed with 4000% of the RDA of vitamin C powder. OK I wait. While I am waiting, I get extremely nauseous. Wow, that is a new development and I fight off vomiting. The urge comes and I get the usual explosion. Then I am overcome with the desire to vomit and can't control it. Crap! Horrible convulsions, pain, and dry heaves. White water in the toilet bowl I am now hugging. It is the entire last dose of Linzess.

Needless to say, this freaked me out. Am I supposed to vomit now every day? Why is this happening to me? Did a lot of research. Could it be a bezoar? My symptoms did not match up with that so I rule it out. Finally, I find the only diagnosis that makes sense. 1% of type II diabetes patients develop "secondary, chronic intestinal pseudo obstructions," in essence a blockage that is not physical but rather a consequence of diabetic neuropathy. So, now what? Gastro can't see me for a month. Wow. I call my GP. He prescribes Misoprostol which I start that night. This med is four times a day. Next morning, I vomit again and hope it will be the last time. Then an hour later, the new drug works and I have a very small movement. Amazed to see for the first time in years, solid matter in my waste. Really? I am maybe going to start having well formed stools? Sounds great! I have been on it now for four days and no longer feel any nausea. This morning, I wake up at seven and immediately have a bowel movement and again much of it has form. 

So far, one of things I like most about this drug is that there is no "ritual" involved like there was with Linzess. I would wake up and take it with a glass of water. Then I would go back to bed for up to an hour, taking care to only lie on my right side. I came across this method in an Israeli medical journal. They found lying on your right side significantly reduces the time it takes to ingest any med and it can take several times longer if you take it any other way. Try this method, you will be pleasantly surprised! Another positive aspect is that you can take it on a full or empty stomach unlike Linzess, which requires an empty stomach and requires not eating or drinking anything for at least 30 minutes. The new drug regimen is much better with no such restrictions.

What have I learned so far? I am pretty sure I will have at least one movement every day, first thing in the morning. If that is all I get that day, it is fine, not like before where I was extremely anxious about not getting that empty stomach feeling all day. Totally different now. I am not sure I am getting a full emptying or not with the Miso because the process is so different with Linzess, where, when it worked, I would physically feel a totally emptying, but those days were rare, and on most days with Linzess I would still feel the urge to go all day. This is not happening at all now. Instead, I go, and that is it. No more bloating or pain and my stomach has completely stopped sounding like a freight train. Instead it feels settled.

I started by mentioning fatigue. I noticed something yesterday and it seems to be continuing. I stopped being tired! I was literally nodding out several times each day. All of my energy was going into digestion I guess. Anyway, I have an entirely different mental altitude from not being tired. I am looking towards the future with complete optimism instead of begging God to take me home! The return of optimism after a year of total depression is a hidden blessing. Can't believe this is not listed as a major side effect.

I should mention that I can only take the Miso for 12 weeks. I will cross the next bridge when I come to it.

God Bless You All!

 

Robert

 

 

Edited September 30, 2022 by Hodinator
change word, and add a sentence.

[Hodinator]

Left out something. A shout out to the people at Abbie Assist. Thank you! You supplied a year of Linzess to me at not charge because of our financial situation and I am greatly indebted to you for this. Compassion seems to be a rare commodity!

[Sunny23]

I just started taking Linzess for about a week and today it feels as if I'm running on fumes. I'm so sleepy 😴 🥱 that I can't bare it anymore. For the first days I was ok but I guess it was slowly creeping up on me but today is like no other. That's why I ran on the internet to search for others who have and are experiencing the same thing with the medication. I'll have to leave it where it's at because I need all the little bit energy I have to function everyday. Thanks for all the great submissions for this medication.

[Hodinator]

Hi Sunny,

So sorry you are going through this, I know how unbearable it is.

My saga continues. Eight days later, and to be honest, I have gotten very little relief. Nausea is under control so that is a plus. Almost no movement after the first four days of Misoprostol and I know that everything is hardening. Sunday night I couldn't take it any more. Knowing I would be seeing the Doc in the morning anyway, I took three ducolax. It worked and I felt largely but not completely empty. Progress.

My Doc is away so I see someone else who was very nice. He says I am doing everything right. He wants me to continue the Miso and the Ducolax for three more nights. He says that should get everything moving along. Then he says I should go back on the Linzess, that sometimes the body just needs a reset and then it works well again. I tell him about the exhaustion but he still thinks I should resume it. He says to try not to be discouraged. I may end up on daily Miso and Linzess and supplement with softeners as needed. He said he had no more to add. Not really happy about it. The Ducolax is continuing to work, and I get a modicum of relief, but feel far from empty and very uncomfortable the rest of the day. I take the Ducolax at night and get very little, if any, quality seep, only adding the exhaustion.

I return to my Doc on Friday to discuss all of this. I have been reading voraciously about Gastroparesis. I was amazed to see that Lyrica is commonly proscribed for this. I've been telling doctors for twenty years that I have undiagnosed Fibromyalgia but none have taken it seriously. I match 25 of the listed symptoms! They want me to have five cervical laminectomies which I will not do, so they gave me Tizanadine to force my neck to unclench and Hydroxyzine Pamoate as a sleep aid. Anyway I discovered that the Hydroxyzine, when taken with the Tizanadine, does wonders, except that my hands remain numb. Hmm. Hydroxyzine is for anxiety! Bingo. Although I haven't taken it for a while, they put me on Welbutrin to eliminate anxiety caused by Mild Cognitive Impairment which itself is caused by diabetic neuropathy and is yet another symptom of Fibromyalgia known as "Fibro Fog" that Lyrica treats. So, apparently Lyrica treats all of this, and may also help the numbing in my hands, something else for which it is proscribed. I really think I should try Lyrica, at least until we know if it works or not. It is worth a shot.

I am also going to ask him to register me for a medical marijuana card for Mississippi. Even https://www.nimh.nih.gov says that one is a no brainer. The THC provides immediate relief when inhaled, slower relief if ingested.

I will check in again to update. I hope you will let us know how you are doing too.

 

God Bless!

Robert

 

Edited October 5, 2022 by Hodinator
Change wording add sentence

[Hodinator]

Wanted to follow up. I am feeling a lot better now. Misoprostol and stool softeners working better with each day. My entire outlook on life went from dismal to very optimistic in one short week. They are starting me on Lyrica soon in combination with the above. Also, I found and joined another group with about 5,000 members specifically for gastroparesis. It is also very helpful.  https://www.stuffthatworks.health/gastroparesis