Pregabalin-Effective Dosage

[paularose]

This is my first post and I'd really like some suggestions from fellow sufferers

I've only been diagnosed with Fibromyalgia for a few months after suffering for over 20 years with widespread pain and fatigue. My most recent doctor didn't have a clue what my problem was but after going here, there and everywhere a physiotherapist thought I had FM and I was eventually referred to the pain management clinic. It was such a relief to be told at last after all these long, long years what was wrong with me. I'd never even heard of FM and now I know it's fairly well known. Why all those years no one could give me an answer seems unbelieveable!!!! The consultant prescribed pregabalin and I'm now on 300 mg/day. Although on the plus side I've had no side effects the down side is there haven't been any improvements either. In fact I've had some serious crashes (the last of which left me in bed for nearly 3 days and another 2 recovering) in amongst some very bad days. When I told my doctor that I didn't think it was working she suggested that I continue on this dosage for another 3 months which will bring me up to Nov. I've already been on this dose for 5 months so my questions are:

1) How long does it take for the drug to take effect?

2) What are the chances that increasing the dosage will be helpful, particularily with fatigue, which is my major concern?

3) Does pregabalin really help with fatigue and fatigue crashes because although the pain is a problem the fatigue is dibilitating. I've already had to leave a PhD due to the illness and have to go back to work soon (when my daughter starts pre-school). I REALLY can't hold down a job at the moment so I'm terrified.

My doctor doesn't really know anything about FM so I can't understand why the decisions have been left in her hands? Why don't we have follow up appointments with the consultant to review our situation after we are intially prescribed these drugs??? It seems crazy to me.

Any thoughts would be greatly appreciated

[getactive]

Hi I dont know the answer to all your questions but as I understand it Pregablin is given for nerve pain and not at all for fatigue. I have been on it now for some months and am now on 150mg 3 times a day. I didnt think it did much good until I missed a few doses then it made me realise how much it does help. I was prescribed it at the pain clinic but my GP monitors it and has increased it from when I was first given it. Hope this is helpful. Take care Sue x

[paularose in reply to getactive]

Hi Sue, I hope you're well. I haven't been on this forum for some time now as it's not easy to do so with a 3 year old to attend to and trying to exist through the hell of fibro and fatigue. I was wondering how you are getting on with pregabalin now. Are you still taking it and if so what dosage? Does it still help? Do you suffer from fatigue? I am now on the max dose of 600 mg/day and my fatigue is, if anything, worse. I still have flare ups that are nasty to say the least. I started pregablin at the start of march and won't be trying another drug til next feb!!! I don't understand why I'm getting flare ups of pain if the drug's supposed to target it. And for me anyway the fatigue is so much more problematic. Maybe I should be targeting the fatigue rather than the pain? I don't know? It would help to hear from someone who's on the same drug. It's mad on this forum though as everyone's experiences are so diverse.

Thanks so much

[getactive in reply to paularose]

Hi Paularose

I am on 150mg three times a day and I think it helps a bit with the nerve pain but I am never pain free. I dont think there are any plans to alter this but I am open to any new treatments offered. Hope things improve fro you xx

[Hidden]

Hello and welcome Paularose!

To reply to your questions -

The usual dose of Pregabalin, also known as Lyrica, for Fibromyalgia is 300 mg to 450 mg per day, split between 2 or 3 doses. Generally, doctors recommend starting at a low dosage, such as 75 mg twice a day, and working up gradually.

Pregabalin is an anti-epileptic drug, also called an anticonvulsant. It also affects chemicals in the brain that send pain signals across the nervous system. For the medication to work properly, it must be taken as prescribed. It will not work if you stop taking it. It should be taken at the same time each day to maintain even levels of the drug in your blood. It is believed to work within your body to calm the damaged or overactive nerves that cause pain. Pregabalin can help reduce fatigue and can reduce the symptoms that cause disturbed sleep.

It may take time for Pregabalin to work. In clinical studies in Fibromyalgia, some patients felt less pain in as soon as 1 week. For others it took longer. If you aren't feeling the pain relief you expect, there may be things your doctor can do to help. Talk to your doctor to find out if adjusting your dose may be right for you.

I don't understand Paularose why you aren't getting follow up appointments with your Consultant as initially I did with mine. All the time my condition was unstable and my meds weren't working effectively, I was seen every month to six weeks. After about 9 months of trying every medication known to man, my condition was stable, my meds were helping manage my pain and reduce my exhaustion I was told to get in touch with my Consultant if I was concerned about anything. Other than that, I now just ask my GP for repeat prescriptions. Have you tried asking for regular consultations? It might be worth a try if you are particularly concerned about something. This is particularly important especially as you feel your GP isn't particularly clued up on Fibromyalgia.

One final thing about Pregabalin, please don't attempt to alter the dose or to stop taking it without prior talks with your GP, the side effects can be very intense.

Hope this helps! Take care.

[paularose]

Awwww thank you so much everyone for your messages, it means so much to me :). I've never done this before and to be honest I didn't think anyone would reply so thanks again

The reason it's taken so long to get round to replying is that I just don't even have the energy it takes to do even this and I've got a 2 year old to take care of, a job I've not been able to do well recently as things have hit rock bottom and thus my desperation to get something done :(. I'm still not out of a crash that has so far lasted a whole week, with at least 2 days spend bed bound. This followed on from another crash 2 weeks previously. I've worked out that I've spent around 1 1/2 out of the last 3 months (since I started pregabalin) either in a serious crash, recovering from one or not being able to function at all. You get the picture......the pregabalin isn't doing it's job!!!!!

As soon as I learned about FM I went straight on line to research it and did the same with pregabalin. I've learned a hell of a lot in a very short time and intend to go on learning Anyway, because of that I guessed my GP should've been thinking about at least increasing my dose. But I'm sure that although she's nice enough she hasn't got a clue about FM and that's why she shouldn't be in charge of making decisions about my meds, the consultant who prescribed them should be. It's just unbelievable that I have never been offered a follow up appointment to at least review the situation. But being new to all of this I just thought that if things weren't working out I'd be able to go back to the consultant at a later date and explain the situation. Sorry this is turning into an epic but I have never spoken to anyone with FM before and have struggled with an unknown condition for years and now it's all just tumbling out.........................................

So yesterday after waking up and feeling bad enough that I couldn't join my partner and my daughter yet again for a day out (never mind cancelling my birthday celebrations) I was really tearful (again!!). So I decided to call the hospital.........go straight for the jugular (and now I see from your advice this morning Lyn it was clearly the sensible thing to do). I spoke to my consultant's secretary very briefly to explain what had happened. She looked at the letter the consultant had originally written recommending which drugs I should try. The letter instructed my GP to try pregabalin but if I couldn't tolerate that to try nortriptyline. I couldn't believe what she then said which was.................seeing as I can't tolerate pregabalin I should tell my GP to prescribe nortriptyline!!!!! After I put the phone down it really sunk in.............what the hell is a consultant's secretary doing giving out advice on drugs????? It's just crazy that drugs are being chucked at me with no monitoring or control whatsoever!! I then rang my doctor to talk to her. She's not in until tomorrow (weds) so I expect to get a call from her to talk about this.

I need to man up it seems. I have to explain to my doctor that I'm just not coping, that my life has come to a stand still, that I can't look after my daughter, that I can't even think about looking for work when I need to be doing that in a serious manner and that I don't want to be another benefits statistic when there could be a way of controlling this if only the professionals would take this seriously enough. They also don't appear to be understanding that for me the pain is a problem but the fatigue is dibilitating. I need drugs mainly to treat the fatigue but I think pregablin targets pain primarily???

Rest assured LibbyDe I wouldn't increase my dose or stop taking it as I've read that it's not a good idea and I think it would be dumb of me to suppose that I knew what I was doing. Mind you I'm wondering now whether I already know a lot more than those in charge of handling my situation. I now need my GP to trust that I'm more informed at this stage than she is and that I have the time to find out more than she does especially as she's working PT. I want to be able to go to her with suggestions and have her go with them if she deems them likely to be beneficial. I sigh as I write this as I'm not sure how she's going to take the fact that I wasn't happy with her suggestion to continue on my current dose of pregabalin for another 3 months and instead of calling her first to talk about it again I rang the PMC. I know I shouldn't worry about this but if she's not on my side then I'm gonna have an EVEN harder time of things.

I'm sorry this has been such a long message but I'm adrift at sea with no one to talk to and starting to get really afraid for my future. Before my daughter was born my condition was bad but now it's taken a huge nose dive and I need to sort things out.

Thank you all once again for your help and suggestions. I will battle on and strive to be well again (or at least well enough to live a relatively normal life)

Paularose X

[paularose]

Hi all

I thought I should give an update on the above. I called my GP thinking I'd just explain everything over the phone but just before I spoke to her I realised there were lots of things I wanted to talk about and she also realised that things were bad and suggested we talk face to face. She was really understanding and we talked through my options. She was happy for me to try the nortriptyline but we both agreed that that would be silly when we haven't tried increasing the pregabalin dose to see if that would work. It seems a sensible idea considering I don't appear to suffer side effects from it. So she's writing to my consultant to ask if that's ok. She also agreed that it was strange that I didn't get a follow up appointment with the consultant. I feel that this is unnecessary now I know my GP is going to support me. We also talked about whether pregabalin is a drug that mainly targets pain and less so fatigue. If this is the case I need to find a drug (if one exists) that primarily targets fatigue as this is my overriding problem.

Anyway......the journey begins to find the best solution. I know this could take a long time and I may never find it completely. I just need to get a move on so that I can get back to work. The financial strain is making me stressed out.

Thank you all once again for listening

Paularose