Anyone else on Pregabalin

[doodoolatrice]

Anyone else been prescribed pregabalin for chemo induced nerve pain. I was prescribed it last week 75mg per day and it's completely floored me. I feel like I'm constantly in a fog, constipation and nausea have set in,my legs have no strength and I just feel absolutely dreadful. I was told to cut them down to one every other day and to stick with them as the side affects will diminish with time but I'm not sure I can. I'm just so tired of feeling so poorly all the time. I'm trying my best to eat better so I can put on some weight and I try and get out for a short walk each day, but this medication has really knocked me back. I'm still getting over a viral chest infection ( chemo was cancelled last week because I wasn't well enough). I don't want to go against the advice of the professionals so I would be interested to know if anyone else has had this drug. Thanks Kerry

[Saintgermain]

I’ve never taken Pregabalin but have taken Gabapentin I’m in the States I’ve never had the side effects that your experiencing I don’t know if this is available in the UK I take 300mg at bedtime works great.

[doodoolatrice in reply to Saintgermain]

Thanks, I think Gabapentin is a bit kinder to the body

[Saintgermain in reply to doodoolatrice]

I believe it is I've never had side effects from it if taken before bedtime it really helps with sleep its also a generic very inexpensive.

[Boot1947]

My sister has been prescribed pregabalin for chemo-induced neuropathy and says it makes her feel woozy and a bit sick. She’s not a big fan of gabapentin either - same problems. She has yet to find a satisfactory solution and has been suffering with for over 20 years. So sorry to hear how ill you’re feeling - I hope everything improves even a little. Hugs, Deb

[doodoolatrice in reply to Boot1947]

Thanks Deb, it's a bit of a quandary as to what to do. Sorry to hear your sister is still suffering all these years later.

[Boot1947]

Weighing up the side-effects of drugs meant to help with an existing problem is so difficult. And it’s true that if you can hang in there long enough, the side-effects become bearable, but feeling rubbish in the meantime is just too depressing. When my sister developed neuropathy doctors weren’t even admitting it was the chemo that caused it - at least today there’s more awareness, if no great cure. I still have neuropathy eight years after carbo/taxol - dead toes and furry fingers - but at least it’s not painful.

[doodoolatrice in reply to Boot1947]

I just can't cope with the side effects on top of feeling so unwell. I'm trying to build myself up and on Saturday my legs were so weak I could barely stand for more than a couple of mins,which isn't good when I have to travel to London tomorrow by train for chemo. When I had chemo 3 years ago the Oncologist I was seeing then never acknowledged the numbness I was getting in my toes as being chemo related. Thankfully the Trial Team I'm under now do.

[Boot1947]

You poor thing - travelling to London is a trial at the best of times. Are you at the Marsden? Will you be able to explain the effect Pregabalin is having on you and get any advice? I’ve been working on a research project looking into an intervention for chemotherapy-induced peripheral neuropathy which hopefully will raise awareness, bur it’s hard to explain what it feels like to people who don’t have it. Hope tomorrow goes OK - you are SUCH a fighter and a wonderful example to the rest of us.

[doodoolatrice in reply to Boot1947]

Thankyou, yes I'm being treated at the Marsden. I did mention when they called me on Friday that I was struggling with it so they told me to cut down to one tablet every other day but even that is too much. I'll speak to them again tomorrow. It is very hard to explain, a bit like explaining how chemo makes you feel to someone who has never had it. Good luck with your research project and thanks from a sufferer for doing this and raising awareness. Thankyou for your kind words, my fighting spirit is gone, I think maybe I need to go and find it 😆

[Boot1947 in reply to doodoolatrice]

👍😘xx

[thejoannabell]

I took it briefly after my debulking surgery, and it made me hallucinate. I was hearing music that wasn’t there. Very strange. A former coworker had been prescribed it and she said she had visual hallucinations of butterflies in her shower.

In both cases we knew that what we were hearing/seeing wasn’t real, but it was still a very strange feeling.

[doodoolatrice in reply to thejoannabell]

Oh heck hat must have been very frightening for you and would have been enough for me to stop taking them there and then.

[thejoannabell]

It’s difficult to explain. It wasn’t really frightening, just a very strange feeling. It definitely made me stop taking them immediately, though!

[Stephenlangtonriley]

Kerry, I was prescribed Pregabalin some 7 years ago on 3 doses of 150Mg a day and instantly found my Fibromyalgia pain was massively reduced, fortunately with no side effects. My brother is on 25Mg a day for the same condition but he cannot have a increased dose because of the interactions with his epilepsy medication.

You don't say if you are on other medications but I would suggest going to drugs.com and you can enter all your medication and it will prioritise the side effects in reducing order, I was fortunate that none of my medication had a major conflict except for the common side affect with most of them that can make you tired and fortunately I never suffered that side effect anyway with any of them.

As with any drug of course they have different side effects with different patients, persevere if you can for a month, then you will have a better idea if it is the right and effective medication for you, if you still have issues, then discuss it with your consultant or GP, there are other alternatives but Pregabalin has been the first choice in 2nd line treatment for many years. Abuse of the drug, also known as Lyrica, in Northern Ireland in particular, as a recreational drug has lead it to be included in class C and as such is a controlled drug now.

[doodoolatrice in reply to Stephenlangtonriley]

Thankyou, I'm currently having taxol and the Trial Drug and my Trial Team prescribed Pregabalin last week when I said I was getting the pains in my legs at night. The problem I have is that my weight has dropped drastically since starting treatment as my appetite has been so bad and I'm trying desperately to eat more, but as soon as I started taking the Pregabalin I felt so sick I couldn't eat, i was walking aroubd in a fog and I had a permanent headache. Also they really affected my legs as I seemed to lose all strength in them, as if I had run a marathon, and I could barely stand up for more than a minute at a time. The last time I took a tablet was Thursday night and I'm feeling much better today which is good as I'm travelling to London for chemo. I really appreciate your words of advice, as you have first hand experience of this drug, but I really nervous about taking them, even at a reduced dose so I shall see what they say in clinic today. Thanks again, Kerry

[Mommoo65]

I remember the leg pain being so bad I called my oncologist crying. He prescribed Tramadol and also advised Gabapentin. The Gabapentin made me feel exactly like you described. I lasted 2 days on it. The Tramadol, which I took 1 day before and 2 days after chemo treatments worked great. It’s a mild opioid like medication but I had no side effects but it took care of that leg pain!

[doodoolatrice in reply to Mommoo65]

Thankyou, the hospital are going to put me in touch with my local pain team for them to advise me. I had a dose reduction yesterday, so whether that will help I don't know. Time will tell in the next coming days so I've stocked up on co-codamol and neurofen. I don't want to go down the Gabapentin route so will ask about Tramadol, thanks.