Starting Pregabalin: I started... - Fibromyalgia Acti...

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Starting Pregabalin

MaggieSylvie profile image
21 Replies

I started Pregabalin a week ago on the lowest dose. My GP said I should increase the dose every two days until I reached 300 mg maximum. The first day was wonderful. I had slept well for once and felt good all day and the rest of the week was good on the initial dose. However, last week was so hectic that I daren't increase the dose until today. In fact, I had been scared of starting. Today has been a day when the only requirement for me was to go shopping, so I upped the dose. I didn't dare get in the car. I feel that I'm made of cotton wool and so sleepy. I have to drive ten miles for my car's MOT tomorrow so I hope I will be ok.

How does everyone else manage these increases and how does one live a normal life? It is the most amazing drug I have ever taken - good sleep, less pain, less anxiety and more energy, but this is on the low dose. I'm taking it for peripheral neuropathy in my feet and for an irritable bladder but it seems to be doing me good all round - on the lowest dose, although my feet are much the same. I'm acting very "senior".

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MaggieSylvie profile image
MaggieSylvie
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21 Replies
SlothMode profile image
SlothMode

Hiya Maggie,

My Doctor took me off Gabapentin (bad side effects) and onto Pregabalin. I found this personally to be a much weaker medication for pain especially my nerve pain even after upping the dose. When you're increasing the dose of a medication it can affect you so stay with it and hopefully it should settle down soon. 🤗😊

MaggieSylvie profile image
MaggieSylvie in reply toSlothMode

Thanks, Sloth. I expect I will sleep better tonight and be ok to drive tomorrow. 🙂🙂

Jacjai profile image
Jacjai

Sounds to me your don't need the increas your dose. If you benefit from the lowest dose stick to it.

I started low but didn't get much benefit after being on them for 6 months I was on the maximum dose of 600mg.

I have to come off them after 1 year as I wasn't getting any benefits from them only bad fatigue.

Coming off them are difficult as you will go through the process of withdrawal which is pretty bad.

If the low dose gives you the relief then it's works for you.

My personal opinion don't go any higher until it's necessary, good luck and hope this helps x

MaggieSylvie profile image
MaggieSylvie in reply toJacjai

Thanks, Jacjai, I am inclined to agree with you. I'm on two now and very wobbly and wooly, but off to get my car MOT'd nevertheless. Doctor's instructions were strict; he wants to get rid of the peripheral neuropathy but it's helping me sleep and that's a huge bonus.

E3178 profile image
E3178

I am on a fairly low dose of pregablin 150gms spread out daily. It took a while to get up to this dose as they caused tiredness, foggy brain and a short while of blurred eyesight.Now, after a few weeks the side effects have cleared up and my pain and anxiety has definitely improved. Although I could probably up my dosage I think I will continue on 150gms and only ask for a higher dose if and when I need more help in the future. I don't expect to be pain free ever but this medication does take the edge off for me.

MaggieSylvie profile image
MaggieSylvie in reply toE3178

Hi E3178, I'm glad to hear what you have to say. It's having all these good effects on me too. I'm really happy and yesterday started 50 mg. I'm a carer so I can't afford to be "out of it", so I'll just tread carefully and maybe split the dose to 3 times a day. I do feel refreshed this morning and my joints are quite free. Just hoping I'm lucid when I have to talk to people!

MaggieSylvie profile image
MaggieSylvie

Thanks, Ajay, I have just taken two and am off to get my car MOTd. Fingers crossed I won't fall over!

E3178 profile image
E3178

Hi, re splitting doses. I have some empty pill capsules so I carefully opened a full capsule and tipped some into the empty one. A bit fiddly but doable. I bought my empty capsules from Internet. Hope this helps.

MaggieSylvie profile image
MaggieSylvie in reply toE3178

Thanks, E3178. That's useful to know that you can buy them online, but I don't think I am going to bother splitting them, when I have to increase the dose to so many!😆

KaliAka profile image
KaliAka

Hi Maggie wow that's quick increases.Its taken me around 5 weeks to get on 75/75 dose dat and night. I was told gradual increments after this if required to 150/150 . I have stayed at 75/75 for a while as I've read higher spaces you out and difficult to come back off them .

I hope this helps hun.

MaggieSylvie profile image
MaggieSylvie in reply toKaliAka

Thanks KaliAka, I can see there are many variations in the way people take this drug, and it reassures me to know that I can perhaps "play it by ear". I think my GP has decided that 300 mg is what is needed to have an effect - not that he'd know how I'm going to react, but it's already done so much good, not least to the quality of my sleep, which then has a knock-on effect in everything else. I now only get up once in the night to go to the bathroom. But senior moments are more frequent. My partner has just unloaded logs from my car and said I'd left my keys in the door! Happy days ...🙃😕😃

KaliAka profile image
KaliAka in reply toMaggieSylvie

🤣🤣Just go with what feels right for you hun .I'm still nee at rhus myself .

Blame the keys on the brain fog 🤣🤣

SlothMode profile image
SlothMode

I was thinking Maggie that alongside Fibromyalgia you also have nerve problems like me. Even though these meds are given for fibro these meds are nerve pain blockers. So to put your worries at ease I thought I would tell you the dose of Pregabalin I take. So after trialling by upping the dose my Dr dropped it to 125mg in the morning and then 100mg in the evening. I find this just takes the sting out of my nerve pain. I hope this helps. 🤗😊

MaggieSylvie profile image
MaggieSylvie in reply toSlothMode

Thanks Sloth, that's just the kind of information I need. The pregabalin was prescribed initially for the neuropathy in my feet, which really doesn't bother me as it's never been painful, and it should also help my irritable bladder. But I've found that the quality and the amount of sleep that I am now getting is a major contributor to my wellbeing, and that on its own could be lessening the FM pain. I have four compression fractures, and for the past year, they have been the major cause of pain and it's helping a bit with them as well. I did quite a lot of walking today in a bit of a nightmare (not all caused by the meds), with senior moments and poor preparation being at the heart of it. Thank goodness for some kind people around and my car eventually passed its MOT. Not sure, with my shaking hands, that I'd pass an MOT!

SlothMode profile image
SlothMode in reply toMaggieSylvie

Glad to help and at least passing your MOT is one less worry for you 🤗😊

JennaShi profile image
JennaShi

Hi, I also have nerve issues and take Gabapentin. Are you increasing at night time? If not maybe talk to your dr about trying to increase at night and keeping the main dose you have during the day. I know it’s hard and even worse when you have to go somewhere but I’ve found that consistency is key. I am up to 900mg in the afternoon and 900 or 1200 depending on how bad my symptoms are before bed and have been on it for almost two years now. In my experience, it’s seems to help for a period of time and then I have to up the dose. But management with daily activities has gotten easier. I hope things will get easier for you as well. Please take care of yourself 🌸

MaggieSylvie profile image
MaggieSylvie in reply toJennaShi

Hi JennaShi, Thank you for your kind reply. I have managed to get through a nightmare of a day, but I don't think I can blame it all on pregabalin. I think I've got to a stage in my life when I need to make more effort to prepare myself for a day when I don't know where I'm going and when I have to be in touch with people by phone. If I haven't got their phone number, I at the very least need to take a pen with me! Just home, having driven in the dark. Seeing is getting more and more difficult. I will raise the dose tomorrow - 3 caps morning and 3 at night for two days and see how that goes. My doctor didn't tell me I had any control over my dose - just strictly up the dose every two days, but I did find a week at 25 mg was good. I think, this evening the neuropathy is a bit better, though, to be honest, it has never been painful - my pain is elsewhere. I'm being sensible; I only have to take my partner to his podiatry appointment tomorrow, so nothing too taxing in any way. Your suggestion about increasing the night time dose ahead of the day-time sounds very much the way I will probably end up doing it. Thanks for that. I didn't know I had so much choice.🤗

Horner profile image
Horner

I found all I done was eat and sleep anyone else

MaggieSylvie profile image
MaggieSylvie in reply toHorner

So far, so good for me. I fasted on Wednesday and didn't need much food on Thursday. Putting weight on is the last thing I need. Pregabalin is allowing me to sleep really well; I could go on sleeping in the morning but getting up at a reasonable time and I feel refreshed. It's unknown to me and fantastic.

mcclelland425 profile image
mcclelland425

My doctor wanted me to try this medication, and so I took his advice.

I have been on lots of different medications over the years, but nothing has affected me as much as these did. I wasn't fit for anything and could barely keep awake. I stuck with them even though my husband and I were concerned with the side affects. Not only was I falling asleep but I was in a constant dazed state when I was awake. I remember talking to my daughter on the phone and telling her how I was feeling. I think she thought I was exaggerating as she hadn't seen me while I was on them. When I literally fell asleep at the dining table on Christmas day, it was the final straw, and I had to come off them. In all honesty, I don't think they were helping me anyway so I didn't find any benefits from them.

I started on them with an open mind and didn't have any preconceptions but they weren't suitable for me.

MaggieSylvie profile image
MaggieSylvie

That's awful that they didn't suit you at all. I wonder what dose you were put on initially. I took two last night and two this morning (25 mg each) and put off adding another until tonight, and I feel refreshed and able to cope with my day - not like yesterday, when I felt fine but the senior moments were multiple. Gabapentin might suit you better.

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