Pregabalin - from 50 mg to 300 mg on my own.

[MaggieSylvie]

Hi all, I am from the Blood cancer and Fibromyalgia sites and this is my first time on "Pain". My new GP put me on Pregabalin 50 mg a day, rising by 25 mg every other day to 300mg. From the first day, I got a night's sleep like I hadn't had for 60 years! And I have been so refreshed, in a good mood with loads more energy as a result.

I was put on Pregabalin 1) for non-painful peripheral neuralgia in my feet and 2) for an irritable bladder that got me up several times a night. I was advised to increase it every other day by 25 mg until I reached the maximum 300 mg which I have done (and have now used up the prescription). The GP didn't ask me to stay in touch and I have followed his instructions; all I have done is requested a repeat prescription. Does anyone know why he has told me to keep increasing the dose without stopping, on reaching a dosage that works?

I was feeling so great on it (though a bit wobbly), but a bit "drugged" on each increase. My feet and ankles have swollen but the neuropathy hasn't gone - early days, I know. My bladder has relaxed, so that is good as it allows me to stay asleep at night, but the quality of sleep was so wonderful, even on the lowest dose. I've been without it for a few days now and am not feeling so wonderful. I just wonder why, with Amitriptyline been tried, I was not put on this drug 30 years ago! Can anyone out there throw any light on this scenario? Why didn't he put me on the lowest dose to see how I got on? I was very sleep-deprived but notice that when put on a sedative for dental work, I actually fell into a deep sleep, so presumable, I am sensitive to medications like this.

I find it's a good excuse to stop drinking, though driving is a bit "iffy".

[Emma2017]

Hi Maggie. No idea why he increased it every other day to such a high dose so quickly. I was put on pregabalin nearly five years ago. It was for referred nerve pain. I was started on 150mg. It helped for a bit but then my body got used to it so it was increased and I ended up on 600mg a day. Had various ops and procedures done in those five years. Then last year I started to reduce it. It’s a great drug for nerve pain and clearly for bladder relaxing. I am not sure why he increased it so quickly without trying say 150mg to start with. If it helps then go with it as sleep is important but I wouldn’t increase it further. It’s a terrible drug to come of. I have been slowly reducing it and after 8 months or so managed to come down to 50mg or sometimes 75mg a day but it’s like coming of a class A drug. Which is why I personally would not go over 300mg a day. The wooziness does wear of over time as you get used to it. It’s not advisable to drink alcohol with it as it increases the wooziness (I did drink sometimes and therefore know). However having said all this I am happy for you it helps and gives you some much needed help. Good luck.

[MaggieSylvie in reply to Emma2017]

Thank you, Emma. We have been cut off from everything by Eunice, and finally had power late this afternoon. I ran out of Pregabalin last Tuesday, at least, somehow, I know not how, I had two capsules left! So I must have got the dose wrong at some point. I was busy at the beginning of the week and thought I had another packet; probably my brain was taking time off. Sleep has not been so good since then, gradually getting worse. My mood has not been good and I have caught my partner's cold, so not feeling great, but I don't feel as if I have gone "cold turkey". I just feel tired. I'm planning to talk to my GP as 50 mg seemed amazing and doubling the dose wasn't necessarily better. I hope to get some clarity and to repair any misunderstandings. Perhaps I can start off at 50 mg again. I have had one or two tiny drinks and didn't notice much difference but it's not as if drinking is important to me. What worries me more is having a need to drive sometimes as I'm aware of being a little "off". I am hoping to keep the dose as low as possible for as long as possible; I'm sure you would agree with that. 🤗

[Emma2017 in reply to MaggieSylvie]

Yes I agree with that. You prob would not notice the cold turkey symptoms as you had not been on it for a long time. I was just on such a high dose for a long time, prob makes a difference. I never want to go on such a high dose again. If you felt that 50mg helped you then stay with that for now definitely. On the high dose I put on weight (now shifted again thank goodness) and had bad moods. So it’s not without complications this drug. So the less helps you the better. Eunice was not as bad up here as Dudley was although pretty powerful. We got a covering of some 3 or 4 inches of snow in about one and a half hours this afternoon, quite magical. Rain tomorrow though.

[MaggieSylvie in reply to Emma2017]

Yes, I suspected that might be the case. I put weight on and was constipated but since being without it for nearly a week, both problems have gone. The winds down here have started up again but, fingers crossed, we will have no more power cuts. It has been raining a bit also. The Electricity companies have provided food for all locals who still have no power. I think that as these storms become more frequent, they should have a register of vulnerable people. We have had no snow . . . yet. The skies have alternated between total cloud cover and blue with scudding clouds.

[Emma2017 in reply to MaggieSylvie]

Stay as low as possible and you won’t experience as many bad side effects. Take care, hope the winds stay down.

[Sunlover56 in reply to MaggieSylvie]

Please do not drive on pregabalin, I passed out at the wheel due to this medication. I also had terrible memory lapses and became paranoid. I was only in my early 40s and working full time therefore this medication was not for me. Apparently my personality changed too. Ask someone you trust to keep an eye on you and if they tell you you’re not the same person, please seek medical advice. These are well known side effects. The medication was originally prescribed for epilepsy and definitely change your brain somehow.

[MaggieSylvie in reply to Sunlover56]

I have just received my repeat prescription and will be taking 25 mg tonight. Because I had such wonderful sleep when I was taking it (I've been without for ten days) I had loads more energy and was in a much better mood. Driving can be a bit problematic but we are going on holiday soon and I won't be driving. I just hope I don't oversleep every day! I may stick at 25 mg.

[MaggieSylvie in reply to Emma2017]

Hi Emma, I went onto my repeat prescriptions website today, only to discover that my request had been refused. The dosing instructions were there plain to see - no confusion. I ordered the pregabalin again and it won't be ready now until Wednesday (coming by mail from Leeds, so who knows?) Who has the power to refuse my requests for repeat prescriptions? Surely my GP would not just refuse, he would request a review. It's not as if the website is even user-friendly. Feeling very down and tired.

[Emma2017 in reply to MaggieSylvie]

Has happened to me before. I rang the surgery and apparently they have an in-house pharmacist who deals with all repeat etc prescriptions and it was refused on the fact that I asked for a different quantity. Spoke to her and she was quite sympathetic and we got it sorted as it was my pain specialist who recommended it but he had to write to confirm it but they wrote it out in the mean time. Dr surgeries are different to how they used to be. Keep your chin up, it’s annoying though I know. I now put in the prescriptions 2 weeks before I run out so if there is an issue I can sort it. (kind of wise after the event)

[carePharmacy24]

Probably your body system was more the 50mg and the others that one of the reasons he had to upgrade to 300mg.

carepharmacy24.com