Anyone Taking Linaclotide?

I have been following this forum for awhile but this is my first post. I started Linaclotide a few months ago (first at 145, then a week ago was upped to 290 as I have a very stubborn case of IBS-C). It does seem to be giving me some relief in terms of the gas, pain, and severe bloating I have, but it's not a perfect solution. Certainly better than the way things were before though, so I'm hopeful that this higher dose, along with my following the FODMAP diet (rather loosely at this point, as now I'm basically just avoiding what I've found to be my trigger foods and sticking to a rather limited diet of rice, fish, tempeh, a small amount of oats, and specific fruits and veg). Anyway, my question is to those here who take, or have taken Linaclotide: have any of you experienced strange bruising? I seem to have a lot more bruising than usual. That being said, I also have rheumatoid arthritis and I take two medications that weaken the immune system, and I have seen bruising from these happen before, but it hasn't happened for some time so it seems strange that it is happening now all of a sudden. Unless the combination of the three medications aren't happy playing together, perhaps? There is no contraindication listed for them, so I'm perplexed. If anyone has experienced anything like this, I'd be interested to know. Thanks, and thanks for all your great posts on this forum. I'm learning so much from all of you!

[xjrs]

I have been taking Linaclotide for some time and don't experience the bruising you describe. Linaclotide acts in the gut only, barely crosses into the blood stream and is eliminated in waste as natural peptides, so I doubt there would be an interaction, but you'd really need to discuss all of this with a doctor.

[Hidden in reply to xjrs]

Thank you @xjrs! I kind of thought it might not be from the linaclotide but I had to check. I also called the gastro office and talked to the physician's assistant and she told me it should not do this. So I put a call in to my rheumatologist's office and she asked me to send her photos of the bruising. Perhaps she can figure something out. Thanks again for your response!

[mistyboo]

helloI was given this for my ibs c and it gave me raging runs on the loo every 10 mins.,for 5 hrs Even in the next morning it was the same. I think the dose was too high for me and asked if I could get a 145 dose but was told it isn't available in smaller doses.

It is good and works but I couldn't take it everyday or even every other day and be on the loo all the while. No side effects that I noticed.

Hope you get things sorted.

[Hidden in reply to mistyboo]

Oh no! I'm so sorry to hear it had you "running" like that @mistyboo! The 145 dose definitely started helping me but I think the 290 will be better. I've never had the runs from it - not once. I do believe my gastro was right when she said mine is a very stubborn case, but at least I have hope now. Thanks for your response!

[Eliana5 in reply to Hidden]

I think they have come out with a lower dose. I think 72mg? Not sure but you can always Google it. I think this seems like a problem for a lot of people on this medication..but fortunately there are others such as Trulance or Relistor..

[edwangy in reply to mistyboo]

I take linoclotide but 290 is far to much for me. As it's the only dose in UK, I empty capsule and split the powder into 4 and just take a quarter

[Eliana5]

Hi, I didn't have much luck with Linzess as it gave me diarrhea even on the low dose. So I tried others such as "Trulance" and "Relistor". I think the Relistor worked the best but for some reason my insurance stopped paying for it so back to square one. Let us know how you get a long..

[Hidden in reply to Eliana5]

Hi Eliana5 ! I have read a little about those other two and I think it's possible she could switch me to one of those if Linzess doesn't work out? It's good to know that someone has had good luck with them, just in case, thanks for your response! I'm so sorry you're back to square one though - that's awful! I hate it when insurance companies stick their noses in and interfere with care that is working for us! I'm still waiting to hear back from my rheumatologist to see what she thinks about the bruising, and it's still early days on the 290 dose so I'm not sure how well it's really helping yet but I do think it may be doing more than the 145 (unless that's just wishful thinking?!). I should know more very soon I hope. My problem is, besides 20 years of having IBS, over those years I have added several medications for my rheumatoid arthritis and for a heart arrhythmia that all cause constipation as a side effect, so that is what makes my case especially stubborn I guess. Doing everything I can to help it with diet and exercise and drinking lots of fluid, so from here I'm depending on probiotics, stool softenders, and (hopefully) the Linzess. I really hope you can find something that works for you soon, I know you must be suffering right now!

[Eliana5 in reply to Hidden]

Actually, not at all. I have been on Senna for 14 years and it works like magic. I couldn't do without it.

[Hidden in reply to Eliana5]

I use Senna too!! And you are correct, it does work like magic!! lol But I was only using it as a 'last resort', when I hadn't had a movement for over a week and couldn't eat anymore, and the pain was too much to bear (which was stupid of me, I know). Now I still use it once in awhile as a back-up to the Linzess (or at least I did on the 145 dose) if things get too backed up, but I don't have to use as many pills when I do. It really is a life saver!

[Eliana5 in reply to Hidden]

Yes it is! I especially love the Geri-kot. It's a great Version of the Senna and wow..it works. I take it every Saturday night. Unfortunately I can only take a stimulant laxative due to weak pelvic floor or I can't push it out on my own. Or I would just go on the Linzess or Trulance or Relistor. But Senna alone does the trick once a week in two hours in Sunday and I'm all done. When I was trying the Linzess I ruined my days "waiting around" for a bowel movement which was no fun and I had no life. I sometimes take 2-3 Colace stool softeners Thursday, Friday and Saturday. It helps but not stimulating enough.

[Hidden in reply to Eliana5]

Ughhh, I have taken 3 stool softeners every day for as long as I can remember. Not sure if they even help me! But I sure know that Senna did, whenever I took it! lol I never heard of the Geri-kot, I'm going to have to look for that. Thanks for the tip! Heck, I may just be able to do away with this Linzess altogether! I'm with you on the waiting, it can really make life, ahh, 'less enjoyable'?

[Jenny3267 in reply to Hidden]

Take care with probiotics. If you have SIBO they can worsen constipation. I was ibs-d all my life then took lots probiotics and became severely constipated.

[Hidden in reply to Jenny3267]

I actually went off mine for awhile and tried taking peppermint oil capsules. I thought perhaps the probiotics weren't doing anything (or enough) anymore and I had read on this forum that some people were having good luck with the peppermint. Well, that didn't really help me all that much, so after a couple months I stopped it and just recently went back to the probiotics, and I've already noticed some improvement (take that with a grain of salt - I also got an increase in my Linzess dose! lol). So I guess it's a 'wait and see' game at this point.