Pregabalin and Linaclotide: There's a bit out... - IBS Network

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Pregabalin and Linaclotide

XDjames profile image
19 Replies

There's a bit out there in the posts but it would be good to hear from anyone with experience of either of these. GP can't prescribe me linaclotide: blocked due to a record of IBD (i.e. Crohn's that I have/had -no physical signs, long story). So I get the P and a followup visit to see if that works and maybe a GE consult for the L if it doesn't.

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XDjames profile image
XDjames
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19 Replies
Ceasersalad profile image
Ceasersalad

I was prescribed Pregbalin as I has chronic pain , and also IBS . The side effects to this medication were awful , blurred vision , dizziness . This medication can make you constipated. I refuse to take medication that is highly addictive. Also in the press I read it is linked to suicide by patients when they come off it . Please do your research before taking such a high addictive medication. I work in mental health and many of our clients are prescribed this medicine for psychotic behaviours.

I hope this helps a little

Ugly_kid_jo profile image
Ugly_kid_jo in reply to Ceasersalad

… each to his own. Are you a qualified GP or Psychiatrist? I’m sure your post is well intentioned, but it comes across as slightly scaremongering to be honest.

I’m sorry that you had such a bad reaction to the drug, but not everyone will have the same experience.

Ceasersalad profile image
Ceasersalad in reply to Ugly_kid_jo

Thank you for your reply.

I did not say that everyone will have those effects. Also there is really no need to come off passive aggressive as this is a safe place for all of us sufferers to seek advice, vent .

I was talking about my experiences with this medication. As I work in hralthcare I have seen the effects.

Have a great day

Don't forget to smile

Ugly_kid_jo profile image
Ugly_kid_jo in reply to Ceasersalad

No offence intended… but you weren’t just talking about your experiences, were you?

I’m not about to get drawn into an argument on here, but your words were:

“Also in the press I read it is linked to suicide by patients when they come off it . Please do your research before taking such a high addictive medication. I work in mental health and many of our clients are prescribed this medicine for psychotic behaviours.”

As I said, I’m sure your post was well intentioned, but that doesn’t exactly read like a balanced statement. My concern is that you could well put off somebody who might be helped greatly by taking this stuff.

You have a good day too.

Ceasersalad profile image
Ceasersalad in reply to Ugly_kid_jo

I'm not arguing, but also not stopping anyone from taking a medication that may be beneficial for them, nor do I have that power to do so All I meant was research before using it . As with all meds there are side effects, and yes I have done my research, I have close links with health care . I will stick by with what I have said. If you really don't like an opinion one should not ask for one on a forum with many different people and experiences.

Good day !

Ugly_kid_jo profile image
Ugly_kid_jo in reply to Ceasersalad

Er, I didn’t ask for your opinion..? But no hard feelings on my part, anyway.

XDjames profile image
XDjames in reply to Ceasersalad

Thanks. I now suddenly experience a new variant of the delightful gut sensations that IBS deliveres, a sort of energy-draining deep ache, that is almost certainly wind but which iI feel very strongly (visceral hypersentivity?). I dont want to lock myself up so I can't blow. But I'll try it and if it fails I might get to the Gastro Enterology consult eventually for Linaclotide which might help ....

Ceasersalad profile image
Ceasersalad in reply to XDjames

Yes IBS is a horrible thing to have , go with what YOU think is best for YOU try different options, see what best suits you . Also don't be afraid to go to your doctor and say this does not agree with me

Wishing you good health

TedsMum247 profile image
TedsMum247 in reply to Ceasersalad

I recently also read some bad press on Pregabalin, I read the article online. I was interested to read it because I have a friend who was prescribed it by her GP. Having read the side effects, I am now very worried about her. From a long term IBS-M sufferer, I know GPs can put patients on anti-depressants as a last resort. In my case it was Amitriptyline and Sertraline, I had a bad reaction to both and stopped them. So I concur with your post.

Boxroad profile image
Boxroad

P? GE? L?

Ugly_kid_jo profile image
Ugly_kid_jo

Hi there.

Don’t normally post on here…. but I’ve been taking pregabalin for about 18 months now… on top of a few other things… predominantly for anxiety; more specifically, ironically, for “Generalised Anxiety Disorder” - but it’s made a bit of a difference to my IBS. What symptoms are you trying to alleviate with it (you don’t mention that)?

I still get anxious at times of course, but it does seem to have dampened down the ibs symptoms a bit - mainly as a side effect of the reduction in anxiety (which is the root/underlying cause of my IBS).

It’s still very much of a slog some days, but I’ve been doing a lot of work on myself over the past 18 months or so, and hopefully it’s starting to bear fruit.

All the best,

K

XDjames profile image
XDjames in reply to Ugly_kid_jo

Thanks, did not want to srart a warm discussion I was more interested in what others experienced with these drugs. As above it's the subtle but nasty pain having the effect of 'indikng' or 'squeezing nuts', very difficult to ignore and rise above.

Ugly_kid_jo profile image
Ugly_kid_jo in reply to XDjames

Hi there.

Appreciate that, and it wasn’t my intention to start one either. I only posted to say that, as a long term (35+ years) sufferer of IBS, and having tried everything under the sun over the years, my own experience of pregabalin has been overwhelmingly positive.

Yes, there’s some side effects, but everyone is different and reacts to medications in different ways.

Also, as I’m sure you’re aware, the best place to get objective advice about this type of thing is probably your GP and/or, if you’re lucky enough to have access to one - a qualified Psychiatrist.

I wish you all the best in whatever you decide to do.

XDjames profile image
XDjames in reply to Ugly_kid_jo

Well that's really useful actually thanks, and for sure people react differently. Me, for example, amitryptiline does my head in so that's out. What is worst for me is wind that seems to get trapped and provides, thanks to visceral hypersentivity, the whole range of horrible discomforts. So cementing it in is a terrifying prospect. I got some senna in case.

IBS is a medical speciality within a speciality within a ..... Probably half a lecture to a GP (would love to know that they are taught in the classroom stuff) then it's probably down to chance what experience they gain and what they read. Gastro specialists knowing anything 'IB' tend to be IBD -Crohns or Colitis (their charity is bigger than ours .....) perhaps because they can actually see it, so finding a gastro with enough knowledge of IBS to do other than prod, poke, sample and say 'sorry can't help, move along to talking health and dietician' would be rare luck. This forum seems to have the best intel from folk like yourselves!

Also I've spoekn to the nurses on the IBS helpline a couple of times, and that's been a great experience.

Ugly_kid_jo profile image
Ugly_kid_jo in reply to XDjames

Well, I’m glad you found it useful. I’d be happy to discuss my medication regime / stuff that’s helped me in the past if you want to send me a private message… I believe there’s the facility to do that on here somewhere (as I said. I’m not a regular poster/user). I only responded to your post because you mentioned pregabalin - and as I said, for me it’s been very beneficial.

My concern, although I might have expressed it more eloquently, is/was that people are not put off trying medications that qualified healthcare professionals (of which I’m not one!) have suggested by reading anecdotal / subjective messages on a bulletin board… however well intentioned.

xjrs profile image
xjrs

I hadn't tried Pregabalin, but I had tried Gabapentin which is a similar drug. The problem is everyone's reactions to things (medication, probiotics, foods) is always going to be different based on a person's bodily makeup. For me the Gabapentin caused stabbing pains in my side (stomach). I only took it in small doses (maybe even starting with part of a pill) and for a very short time before I gave up on it. The stabbing stomach pain side effects took 3 months to wear off after stopping it - the pains tended to be worse when I was due a meal. I suppose on the up side, they did wear off in the end. IBS is a difficult road and with you having already tried amitriptyline, I can see that this might be the next choice, as I had made a similar choice at the time being intolerant to amitriptyline too. So it is a difficult decision.

Krisbetty profile image
Krisbetty

I stopped taking linacoltide as it was causing overflow and made me really anxious about going out. I took the decision to stop taking all my prescription meds including amitripltyine a month ago and i feel like i have my life back. All i take now is laxido once a day and dulclax if need be. For pain i take solphadine at night. I did discuss this with my GP and she was all for me to give it ago.

PinkCrayon123 profile image
PinkCrayon123

Hi, I've been on Pregabalin for one year now and I'm not aware I experience any negative side effects. I think Pregabalin has helped ease my pain a little.

Ugly_kid_jo profile image
Ugly_kid_jo

Please don’t think that I’m trying to get the last word in here, but just FYI for anybody considering or being offered pregabalin as a possible treatment for anxiety… here’s the facts on the drug from the NHS website.

For me, it’s been very beneficial, with very few and well tolerated side effects.

nhs.uk/medicines/pregabalin/

And that really is the last thing I have to say about the matter.

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