Anyone else in my situation?

[Nyansnan2]

I've been prescribed Pregabalin for chronic back pain. RLS And Told Side effects are awful. Just wanted your opinions plz.

[Hidden]

Hello,

All I can say is about my experience with Lyrica. I am on my way down (and eventually off) because of the aggressive and abnormal thoughts I developed.

[Hidden]

Hi.

there's probably a lot of people in the same or similar situation. Pregabalin and it's sister medicine gabapentin are commonly used for RLS and nerve pain.

It's probably better to say the side effects of pregabalin CAN be awful rather than the side effects ARE awful.

If you read a list of the possible side effects they do seem terrible. However, not everyone gets all the side effects and not everyone gets them to the same degree.

Nobody really wants to take any of these strong medicines with potential side effects but pregabalin is a better option for RLS than a dopamine agonist, because dopamine agonists also have side effects, but in additon can end up making RLS worse. It's also a better option than other popular medicines for chronic pain for someone with RLS e.g, amitriptyline, because amitriptyline makes RLS worse.

An opioid can be used for RLS and some doctors are willing to prescribe one, but not many. Opioids are also no longer recommended for chronic pain.

I confess I am pro-pregabalin or pro-gabapentin. There are other members of this site who may say they have had a bad experience with one of these, and that CAN happen, but may not necessarily. You will also find members who suggest trying various non-pharmacological remedies for your RLS which works for them. However, they won't be much use for your pain. Taking pregabalin doesn't exclude you from using these remedies as well if you wish.

At the end of the day it is your choice and it comes down to a balance between what your experience of unwanted effects will be if you do take pregabalin and what your experience will be if you don't.

In December 2019 the US Food and Drug Administration issued a warning about gabepentin and pregabalin. It was about the possible risks of taking one of these for people who have respiratory problems and it only applies to them. (No worries if you don't have any respiratory problem).

However, in the warning they included a paragraph which I found very helpful which was this -

"All medicines have side effects even when used correctly as prescribed, but in general the benefits of taking a medicine outweigh these risks. It is important to know that people respond differently to all medicines depending on their health, other medicines they are taking, the diseases they have, genetics, and many other factors. As a result, we cannot determine the likelihood that someone will experience these side effects when taking gabapentinoids. Your personal health care professional knows you best, so always tell them about all other medicines you are taking and if you experience any side effects while taking your medicines."

I've been taking gabapentin which is more or less the same as pregabalin with the same side effects for nearly 2 years. I started taking it for nerve pain, but at the time I was taking another medicine for RLS, When I realised that gabapentin also treated RLS. I reduced the other medicine and eventually stopped it. I have been taking only gabapentin for pain and RLS for nearly a year. It works fine for me.

I do have side effects. Generally the lower the dose you take, the less the side effects are. It made me quite drowsy at first, but then that faded. It can make me dizzy sometimes, but not terribly and sometimes it makes me clumsy when walking. I notice that some days, especially in the morning, my vision is a bit blurry and occasionally I have double vision. I haven't put on weight. I haven't noticed any significant cognitive problems. I have very little pain, hardly ever any RLS symptoms and sleep 6 to 8 hours a night.

I've also taken supplements for my RLS iron, vitamin B12, vitamin D and magnesium. I've had physiotherapy for the pain and acupuncture. These are complementary.

Prior to taking gabepentin, my pain was worse, I suffered augmentation with RLS symptoms every day, any time of the day affecting legs, arms neck and shoulders and on a good night slept 3 hours.

I do have to say, you can see why I'm pro-gabapentin (and pregabalin), but realistically it doesn't work for everyone.

You'll just have to try, don't be put off by reading about side effects. If they're worse than your pain and RLS, you can stop taking it.

[Nyansnan2 in reply to Hidden]

Thank you. Ian on o low dose 50mgs and this is my second day. I've falling asleep everytime I sit down but not a bad thing. Lol. I take other medications too as I have osteoarthritis in both hips, High blood pressure and anxiety. Like you I take vit D, vitamins plus extra vit c. I will just see how it goes and keep you all informed. Thank you. Been of great help.

[Hidden in reply to Nyansnan2]

Pregabalin can make you drowsy at first. 50mg is a very low dose, so side effects shouldn't really be a problem. However, it may not be enough either, but it's the usual starting dose.

If you'r taking other medications, they may actually be making your RLS worse.

What are you taking?

[Pam34]

If you read my previous entries I have been on 150mg of pregabalin for nearly 2 years. After augmentation on Ropinirole and tolerance of tramadol I was persuaded by my neurologist to try pregabalin.

It gives my 80% coverage which realistically I think is the best we can hope for. Yes, like any strong drugs there are side effects. For me they were balance issues and weight gain both of which stabilised after a few months. Personally I am prepared to put up with the side effects as I get a good night sleep and that’s priceless.

Good luck with whatever you decide to do.

Pam

[Nyansnan2 in reply to Pam34]

Thank you so much. I've taken my first one now so will try to be vigilant.

[Pam34 in reply to Nyansnan2]

Are you taking anything for RLS at the moment? You have been prescribed this for back pain or RLS ? I’m a little confused. You are worried about taking it because of the side effects?

All I can say is don’t give up at the first sign of side effects. Unless they are unbearable they do ease. Any drug has side effects. It’s best to be aware of them but just remember that they vary so much from person to person and you may get none, some mild ones and if you are really unlucky some you can’t cope with. Like I said I was prepared to put up with them for a good nights sleep. And they did ease.

You say you have just taken one now? I take mine all in one go (150mg) at 8pm so any side effects (balance) occur at night. When are you taking yours?

Pam

[Nyansnan2 in reply to Pam34]

I have both conditions plus osteoarthritis in both hips so I'm taking other medications for those. The intention is to gradually find a good balance of what works for me. Thank you again.

[Nyansnan2 in reply to Pam34]

I'm taking them one in the morning and one at nights

[borasha]

Pregabalin gave me problems with vision and breathing. I have now stopped taking Pregabalin but have not found anything to take it's place

[Nyansnan2 in reply to borasha]

Wow. That sounds serious. Hope you find a solution soon. Thank you.

[nick-the-turk]

Hi I’ve been taking pregabalin for about 3 years now and have not suffered any side affects but could be just lucky good luck

[Nyansnan2 in reply to nick-the-turk]

Thank you. It's day 2 for me and I've been feeling very sleepy but apart from that I'm good.

[nick-the-turk]

I do take them along With codiene phosphate together they do make my drowsy hence why I don’t drive much but I’ve put that down to the codiene because I’ve taken them before on there own and they had that effect on me that was for pain relief

[Nyansnan2 in reply to nick-the-turk]

Ok yes I'm very drowsy and I take Zapain for pain and that contains codiene. . Hoping it will wear off and settle soon. Thank you been very useful and gave me some ideas. Thanks

[ScribblerCLT]

I am only speaking for myself, but I had really bad physical side effects the morning after first taking gabapentin. Two weeks in, I felt so awful I went to the ER, which advised me to get off right away. And it took a full 10 weeks to sort out all the PD- related symptoms it triggered, though admittedly some of that is PD progression. I am now wary of all neurological meds, especially anticonvulsants. To treat my RLS, I started using Natural Calm magnesium chloride gel (sold in Canada), and it works for me - actually slept a sold 6 .5 hours last night, up from 2-5 hour stretches.

[Nyansnan2 in reply to ScribblerCLT]

Thank you. Been listening to reviews on YouTube and hasn't made me feel any easier about it but I'm still taking them

[isallylew]

I take it’s sister, Gabapentin. I’ve had minor side effects.

If you want to hear first hand go to YouTube and search Pregabalin. Both of these drugs have been assigned as controlled substances in the UK.

I’d really weigh pros & cons before you take it.

Good Luck

[Nyansnan2 in reply to isallylew]

Thank you.