Medication loosing its effectiveness

[Gardenlover2020]

I’ve been taking Prucalopride for a year now & it has been loosing its effectiveness slowly during this time , I’m now on 4 mg per day & also I’ve had to start taking Bisacodyl 20 mg as well over the past 6 months to keep things moving .

I go to the toilet to some extent everyday , but it’s getting less and less every day now , sometimes only doing a very small amount in the morning and I’m getting worried as to where I go from here , will it stop altogether ?

Has anyone experienced this & what happens next with medication, is there anything else I could try ?

I eat healthily, have done the FODMAP diet , drink lots of a water & do a lot of walking .

I’m seeing a consultant, who I’m due to see on Wednesday, but just wondered if anyone had any suggestions in the meantime please ?

Thanks you 🙏

[Meleber]

20 mg bisacodyl? Not at once I assume. I hardly can tolerate 5 mg and that's why I cut the tablet in half. Sorry to read that you still have problems with constipation despite the medications you take. I don't have any suggestion. It's good that you can see a consultant this week.

[Justbreathe55]

Good morning I'm sorry to hear the prucalopride has stopped working for you it must be so worrying. I have good and bad days with it, if I don't go for a day I up mine to 3mg then go back down to 2 again and so far that's working. I'm sorry I can't offer you any advice I'm seeing a neurologist atm because of numbess and tingling in my leg I'm kind of hoping this is causing my slow transit but who knows I'm having nerve studies on Thursday. I really hope they can find you a solution to your problem I feel your pain it really is horrendous 😞 xx

[Gardenlover2020 in reply to Justbreathe55]

Thank you , I find it works better some days than others too . It’s been a lot better today thankfully & I dropped to 3 mg this morning , the consultant told me last month to drop to 2 mg as he wasn’t sure how safe it was to be taking 4 mg , so I’m trying to do this but it’s hard when things are slow .I’m sorry you’re having problems as well , it’s awful isn’t it ☹️

Have they given you any ideas on why you’re getting the sensations in your leg ?

The nerve studies sounds interesting, how does that work ?

I hope they give you some answers too & thank you for your kind reply xx

[Justbreathe55 in reply to Gardenlover2020]

They think i have a nerve issue but they're not sure if it's a localised problem or more of a general neuropathy issue hence the nerve studies. They will test to see how the nerves and muscles react to electric current ( not as horrendous as it sounds hopefully) will let you know how I get on x

[Gardenlover2020 in reply to Justbreathe55]

It won’t be horrendous at all , I’m sure it will be gentle , I think I’ve read about something like this is it Electric Interferential stimulation ?Or am I thinking of something different ?

Either way I hope it’s helpful to you & gives some relief , please let me know how you get on x

[xjrs]

Are you completely FODMAP free? Can you tolerate any FODMAPs? Can you tolerate fibre (e.g. oat bran, wholewheat, high fibre fruits & veggies)? I found that when I was almost totally FODMAP free it made me more constipated. This may in part be down to low FODMAP foods tending to be less fibrous, plus you reduce feed for the microbiome and much of the content of poos comes from gut bacteria. Ideally people should eat as many FODMAPs that they can tolerate, though I know it can be a massive challenge. It went through a stage of nearly all FODMAPs causing me pain, until I found other ways of tackling the pain. I still struggle with some FODMAPs though.

[Gardenlover2020 in reply to xjrs]

I’ve been on the FODMAP diet for a while , too long now , but I am careful to add fibre into my diet , with seeds , nuts , veg , rice , gluten free wholegrain bread etc .So I think I’m getting enough , but I’m speaking to a nutritionist tomorrow, so I’ll see what she’s got to say about what I’m eating as she’s had a detailed list of my food , meds , vitamins , as my diet has got very restricted, with so many food upsetting my digestive system and I want to know where I’m going wrong as my stomach sounds like a washing machine most of the time !

I’m also getting a Sibo test done in the next couple of weeks to see if this is the problem?

Thanks for your help , I do appreciate it .

[xjrs in reply to Gardenlover2020]

You might want to see my entry in the thread below about SIBO:

healthunlocked.com/theibsne...

[Gardenlover2020 in reply to xjrs]

Yes I’ve had a look , thanks .I’ve got my Sibo test at the hospital on Monday , it’s a 3 hr test so I’ll see what the result says

[xjrs in reply to Gardenlover2020]

Good luck. Glad that you are getting it done officially at the hospital.

[Meleber in reply to Gardenlover2020]

Was it a Lactulose breath test? I'll hear about the results of my lactulose test next Tuesday. This 3 hour test was also done in a hospital (Netherlands). They didn't test for methane but maybe results could also indicate a problem with methane producing organisms in the gut.

[Mutleyforever]

Hi there, this is horrible for you I know! I have similar issues and have just stared taking flaxseed, 1 teaspoon in warmed water (3 times as much water), letting it soak for 4-5 minutes and drinking it. I also added some finely sliced fresh root ginger which is also stimulating and good for digestion and it has worked! Actually added it all to my usual green tea but you can add it to whatever warm drink you like👍 Look it up there is plenty of info on its uses and benefits if there are no possible interactions with any other medication.I think you can have this several times over a day but don’t go over a tablespoon of linseed ( flaxseed) altogether to stay within lowfodmap.

Keep trying

[Gardenlover2020 in reply to Mutleyforever]

Hi ,Thanks for that , it’s good to get tried & tested ideas . I do have flaxseed in my granola in the morning & also add chai seeds to soup , they’re both good fibre to add , to your diet & like you say you can add them to a lot of foods.

I like ginger too & put it in my soup as well , I think it helps.

I’m speaking to a nutritionist tomorrow, so I’ll see what she’s got to say & if there are useful tips she can offer , I’ll post them on here .

Thanks again .

[Saraia]

I was prescribed isapghula husk/ isapgol. It helps and its effectiveness doesn't wear off. My only negative is the fact i'm dependent on it. i'm meant to take it everyday, but i try to take it every three days so I'm not so stuck on it. Hope this helps!

[Gardenlover2020 in reply to Saraia]

Thanks , yes I’ve tried it but unfortunately it doesn’t help

[Pte82]

Gardenlover2020, going in a different direction search on "IBS thiamine" Also do the same with "stuttering anti thiamine factors". Anti thiamine factors impact vitamin B1 which in turn affects the way signals are transmitted via the vagus nerve to the gut. The fat soluble forms of thiamine offer advantages over other forms. Adequate magnesium is needed to activate thiamine so attention to this area may offer a means to offset the medication's declining effectiveness. Always consult with your health care provider before using any supplement.

[Gardenlover2020 in reply to Pte82]

Thank you that’s really helpful, I’ll look into Thiamine & I already take magnesium at bedtime