I recently posted about alflorex and how I’m feeling worse from taking it or certainly no better at all... griping tight pain, churning, tired, thirsty, mood lower. Had it for 8 days but haven’t taken yet today.
I’ve had some very helpful replies from people who had a lot of problems and gave up.
I’m at the point of .. do I stop now as my instinct is how can this be helping? Before I do, thought it worth asking if anyone has found that taking alflorex makes their symptoms worse for some time and then everything is much better . Hence they are glad they persisted?
Would love to hear from you if you have time to reply!
Thank you 🙏
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winter2013
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Sorry, I am not familiar with Alflorex? My doctor is very familiar with my anxiety, that’s why she made sure I got the ibschek blood test now available. She knew I would never do any scopes, colonoscopies, etc... I take no medications, I have simply “taken” it for years! I plan my days around whatever arises and deal with it. Since my IBS test came back positive she would like me to try Bentyl, (generic, dysoclomine). I may give it a whirl but not sure yet. I just don’t want to try this, try that, put myself thru seeing if this causes side effects that are as bad as the IBS itself until we find one that “helps”. Just not built for that so I opt “deal with it”. I’ve got it for the most part and now that I know for sure IBS is what I have it has curbed the anxiety 99 percent, I know I’m not dying or have a blockage or whatever I would conjure up! Sorry I wasn’t more help and blubbered on!
Thank you for replying torcol. I completely understand where you “ are coming from” re not wanting to try various things only to make it worse, never know what works etc
Have been like that for years.. put up with it. I have a lung condition called Bronchiectasis and have to take reflux medication ( lansoprazole 30 daily) as it can potentially effect Lucy bags if I don’t.
Have taken it for about 18 months and I got a very mild gastric bug ( say that as it was very mild in my husband) but it set off unprecedented IBS that was the worst I’d had. As first time had a gastric bug since being on lansoprazole and thin due to that it probably has made IBS worse.
As so fed up saw a gastroenterologist privately. Stool test showed raised calprotectin which may be due to lansoprazole but won’t know unless I come off it for 6 weeks which I can’t do. It’s abit complicated ... but anyway asked the gastroenterologist about a probiotic. She said I could try alflorex. I am not seeing her again.
That’s where I’m at. So as with so many things ... it’s decision ...wait and see??
I persevered with Alflorex for the month I phoned their helpline and she said a lot of people get worse to start with then they improve but quite honestly I wasn’t prepared to buy another bottle as I thought it was expensive and made me feel bad so no point in carrying on with it Perhaps it works for some people but not for me
I been taking alflorx now for a few years Ibs-d and I still think I have symptoms I started taking an Imodium after a BM and I go every day I still get cramps tummy growling gass after eating I'm thinking of going off it but I'm on it so long I'm wondering should I do it gradually like every second day or all together, because I don't think it's helping, I don't know what to do, I find taking peppermint tea or digestive tea helps before a meal and alflorx is getting more expensive I was going to get probiotics by maybe probiotic drinks
Agree what works for one doesn't work for another and only the person taking it can decide - no matter how many times you are asking the same question - one size does not fit all - there are a ton of good probiotics out there. Try something like Custom Probiotics - expensive but has none of the added nasties in, Holland and Barret - the Acidophillis 20 billion one is good so is Bioglan - like I said earlier - stop it - wait a few days - if the systems return you know it's not for you My friend thought the same persevere and it will improve - sadly it didn't - the longer she took it and tried to persevere the worse it got and the longer to put right the damage it causes. Look up all the added ingredients it contains - the maize starches, the Magnesium Stearate, Titanium Dioxide. Read the article below
Hi Winter any medication takes time to work ,even those prescribed by doctors dont work when you first take them.It takes two months for probiotics to repair the gut and yes it can make symptoms worse to start with as it clears out all the bad stuff before it starts to heal.I felt worse for the first three weeks on Alflorex but stuck with it and i am so glad i did.I am now on my third bottle and feel so much better, i took eight Buscopan a day to cope with the stomach cramps prior to this and now i only take three a day as a maintenance dose, no stomach cramps no bloating and gradually introducing new foods into my diet.You also need to drink at least two litres of fluids a day to keep you hydrated .Hope this has been some help to you and hope you feel better soon.
You said you have a lung condition ( bronchitis), do you use an inhaler? I ask because the steroids can interfere with other with other meds and can wreak havoc on the digestive system of some?
I have an inhaler for asthma but my lungs by condition is not very common.. non cf bronchiectasis.
Don’t think it’s the inhaler which causes a problem. I have silent reflux which can cause a cough and that can impact potentially on my lungs. So I have to take reflux medication for this.. lansoprazole. Potentially this isn’t good for the digestive system.
As with many chronic conditions it’s a balance which is difficult to achieve.
It’s so irritating having to weigh the goods and bads to strive for balance. My husband has severe asthma but he cannot take some meds for stomach due to interactions. I too have reflux or at least that’s what the Gastroenterologist stated after a five minute consultation? Nice he could make such a diagnosis after a handshake and a how do you feel! Nine months later I had emergency gallbladder removal for a stone caught in my pancreatic duct. Think he might have been a little more thorough? During our brief visit he prescribed Omeprezol 20 mgs twice daily, after In June after the surgery I stopped taking and feel better than ever!
Doctors are quick to prescribe and get people out the door so they can get another in, money, money.
I have found that dealing with my problems using over the counter meds as needed is best for me. One prescription ends up leading to another to offset side effects from the first and so on. Many don’t have that luxury if they have chronic or severe conditions but it works for me.
What didn’t suit you with omeprazole I wonder? I tried it and it caused itching and hives.
Agree I’m not keen on the prescribed lansoprazole 30 daily but can’t face silent reflux and implications. Having said that, I know that being on lansoprazole has made me now dependent on it in the sense that if I stopped it the reflux would be worse.. then rebound etc. Yet it’s probably helped it as well.
Am on health unlocked for Bronchiectasis and a lot of us agree, in the end with chronic conditions, you do have to sort a lot out on your own!
Not an easy business though! Especially keeping calm, not being obsessed and aiming to make most out of life. I try but it’s an ongoing learning journey!
I had HOT FLASHES, I am having them somewhat anyway due to menopause but every single time I took them I had hot flashes on and off for two hours at a time! Drove me nuts, now just once every day or two. My doctor said the rebound from stopping could be worse but did not happen for me, never had another problem, she also said they are very bad long term for liver and kidneys so I stopped them after nine months with no rebound st all! I think it was the stones as I had four bad attacks before it was removed.
I was told by alflorex as I experienced this that you should continue for at least two months without stopping as for some people this is how long it takes to work, my symptoms have definitely got a bit betterbut only time will tell. How long have you been taking them for? Definitely don't stop and start as any good bacteria that you may have built up will go, perhaps call their helpline and tell them all the details before you decide
Thank you kavanagh for replying. Yes I phoned the helpline and was told the same. I’ve only been taking them for 10 days but thought it’d be helpful to post to get peoples personal experiences.
Yes I’m aiming to continue and will hope at some point to see improvement.
Thank you again and good luck with your symptoms continuing to improve!
I tried Alflorex and I too found it made the wind and bloating unbearably worse, couldn’t move for the pain. I spoke to a Rep from Alflorex company who advised reducing the dose to a minimum and then gradually working it up. I have had to approach new things this way before, as IBS causes an extremely sensitive system. I have to say I didn’t get round to doing this but it might be worth trying. Post again if you do and it helps. Best wishes. Ros
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Mirtazapine 
Stopped: B. Longum BB536 (Morinaga) probiotic for gut related health issues (IBS) -> switched to b. infantis 35624 (Alflorex)
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