Hi,
I have eventually got a prescription for Pre-Gabalin from the urology consultant via my GP. The consultant told me to start on 25mg at night and increase gradually. He didn't expect any benefit from 25mg. 25mg at night made me very dopey and by evening I was waking up again. I went up to 50mg at night after 1 week then 50mg at night plus 25mg in the morning for the 3rd week. Again, I am at my best in the evening but am sleepy, feeling rather drunk - don't feel I'm walking straight when I'm out. Also, losing words more than usual - I have ME so I do this when I'm tired usaully but this seems to be all the time.
I had planned to increase by 25mg a week but am going on holiday for 3 weeks in 3 weeks time and don't want it to ruin my hols, so I have decided to jump to 150mg a day, taking it 50 mg 3X a day and put up with the side effects for week and see what happens - see if there's any benefit and if I can tolerate it.
I have Sjogren's syndrome which is dryness throughout the body, partic noticeable in eyes & mouth. Pregab seems to be making this worse.
It also seems to have made hot flushes a little worse.
Also, possibly, Raynaud's Syndrome - white fingers is worse.
Difficult to know what is caused by the Pregabalin.
I would welcome any comments from your experiences.
Best wishes,
Dorothy
Pre Gabalin
Pre Gabalin
Lyme Disease since 1985, ME since 1994, Sjogren's Syndrome, Nerve pain for 8 years just diagnosed in 2012. Cystitis, partly caused by PN. PN helped with Colofac MR - four a day, plus Dicyloverine as needed, plus just starting Lyrica-PreGabalin, May 2012. I've seen my GP and consultants at Furness General - Gynae, Colon for sigmoidoscopy, Urology, who has prescribed the Lyrica and recognises PN. Gynae offered a referral to Dr De Mello in Manchester but I refused. I'll see how Lyrica goes for now.
Re: Pre Gabalin
I'm adding a bit - How do I put info about myself on the site so you can read it at the bottom of my post?
Dorothy
Dorothy
Lyme Disease since 1985, ME since 1994, Sjogren's Syndrome, Nerve pain for 8 years just diagnosed in 2012. Cystitis, partly caused by PN. PN helped with Colofac MR - four a day, plus Dicyloverine as needed, plus just starting Lyrica-PreGabalin, May 2012. I've seen my GP and consultants at Furness General - Gynae, Colon for sigmoidoscopy, Urology, who has prescribed the Lyrica and recognises PN. Gynae offered a referral to Dr De Mello in Manchester but I refused. I'll see how Lyrica goes for now.
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Pre Gabalin
Hi Dorothy,
For your signature go to User Controll Panel located just under the HOPE logo, then into Profile and then edit signature .
Well done with the pregabalin, yes it can be a battle can't it
It does do the woolly headed stuff, forgetting words and feeling drunk and unsteady, hopefully that will wear off.
I can understand you thinking about your future holiday, you want to enjoy it as much a possible, obviously. It's probably not that recommended doing what you are contemplating but I don't blame you and would probably do the same, just be careful and monitor the situation as you go.
I hope that the drug works for you, many people say it has been a lifeline.
I did have extra hot flushes with it too and I know that constipation can be a side effect so could add to dryness, make sure you drink plenty of water to counteract this.
I must say that gabapentin gave me the 'thick' feeling a lot more than pregabalin so I hope you can tolerate it well eventually and that it gives you additional pain refief benefits too.
Take care
Helen
For your signature go to User Controll Panel located just under the HOPE logo, then into Profile and then edit signature .
Well done with the pregabalin, yes it can be a battle can't it
It does do the woolly headed stuff, forgetting words and feeling drunk and unsteady, hopefully that will wear off.I can understand you thinking about your future holiday, you want to enjoy it as much a possible, obviously. It's probably not that recommended doing what you are contemplating but I don't blame you and would probably do the same, just be careful and monitor the situation as you go.
I hope that the drug works for you, many people say it has been a lifeline.
I did have extra hot flushes with it too and I know that constipation can be a side effect so could add to dryness, make sure you drink plenty of water to counteract this.
I must say that gabapentin gave me the 'thick' feeling a lot more than pregabalin so I hope you can tolerate it well eventually and that it gives you additional pain refief benefits too.
Take care
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pre Gabalin
Thank you, Helen. I found the Control Panel eventually. It wasn't visible on my screen til I logged back in. Not sure where to put my medical stuff - put it in "Interests" - it's far from being an interest!
Yes, I think it a bit unwise to increase the dose so fast but don't want to spoil my holiday. I will monitor it carefully.
Dorothy
Yes, I think it a bit unwise to increase the dose so fast but don't want to spoil my holiday. I will monitor it carefully.
Dorothy
Lyme Disease since 1985, ME since 1994, Sjogren's Syndrome, Nerve pain for 8 years just diagnosed in 2012. Cystitis, partly caused by PN. PN helped with Colofac MR - four a day, plus Dicyloverine as needed, plus just starting Lyrica-PreGabalin, May 2012. I've seen my GP and consultants at Furness General - Gynae, Colon for sigmoidoscopy, Urology, who has prescribed the Lyrica and recognises PN. Gynae offered a referral to Dr De Mello in Manchester but I refused. I'll see how Lyrica goes for now.
Re: Pre Gabalin
Hello Dorothy
I would just say - if your consultant has recommended that you take the dose up more slowly than usual then he will have a reason for doing this, perhaps you could ring his secretary and ask if you could talk with him about it? Dry eyes and mouth are listed as side effects of pregabalin - I have no idea about Raynauds.
FYI - the 'normal' dosage schedule is 50mg x 2 in week 1, 75mg x 2 in week 2, 150mg x 2 in week 3 - you can see this here, it is normally taken twice a day.
Some thoughts - my experience was that at the beginning I found the side effects quite troublesome, in particular what you say about feeling like you are not walking straight - that's very familiar, also the word finding problems. Early on I did get impatient at one point and tried to step it up faster because I really wanted the pain relief to kick in (25 mg increase each week for me too), but could not cope with the side effects so took the dose back down again.
However as the dose went up I realised that I was finding each step up easier than the one before. By the time I'd got the dose up to 250mg I was getting good pain relief and really not noticing the side effects at all.
I hope it all works out well for you too.
By the way, as Helen says, the bit at the bottom of each post is your signature. User Control Panel > Profile > Edit Signature - that's what you want.
I would just say - if your consultant has recommended that you take the dose up more slowly than usual then he will have a reason for doing this, perhaps you could ring his secretary and ask if you could talk with him about it? Dry eyes and mouth are listed as side effects of pregabalin - I have no idea about Raynauds.
FYI - the 'normal' dosage schedule is 50mg x 2 in week 1, 75mg x 2 in week 2, 150mg x 2 in week 3 - you can see this here, it is normally taken twice a day.
Some thoughts - my experience was that at the beginning I found the side effects quite troublesome, in particular what you say about feeling like you are not walking straight - that's very familiar, also the word finding problems. Early on I did get impatient at one point and tried to step it up faster because I really wanted the pain relief to kick in (25 mg increase each week for me too), but could not cope with the side effects so took the dose back down again.
However as the dose went up I realised that I was finding each step up easier than the one before. By the time I'd got the dose up to 250mg I was getting good pain relief and really not noticing the side effects at all.
I hope it all works out well for you too.
By the way, as Helen says, the bit at the bottom of each post is your signature. User Control Panel > Profile > Edit Signature - that's what you want.
Re: Pre Gabalin
I had the same side effects with Gabapentin but with terrible headaches too and severe depression. The hospital tried to increase it every 3 days but I just couldn't tolerate it. I would really stick to the time limits you've been given or at least get your doctor's advice and permission. Gabapentin did nothing for my pain at all, even after 6 months. My new consultant is going to prescribe Pregabalin for me but after the horrific time i had with Gabapentin I'm really worried. Thank you for the warning about dryness. I too have Sjogrens and don't think my eyes could survive being any dryer.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
Re: Pre Gabalin
The secret to increasing medications like Gabapentin and Pregabalin is to take it as you can manage it, sometimes doctors have ideals as to the increased levels however each individual has different methods. Poppy I hope that this medication change will help you, I couldnt tolerate it at all but it is worth a try.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Pre Gabalin
Thanks for all your replies - especially, Calluna, for the dose recommendations. I had noticed that you had said that it went easier as you went up. Having started at 25mg daily and done only 25mg a week increase, seems to be the hard way - my Dr was concerned about the dryness, I think. I don't want to be in this state all holiday and now I've increased to 150mg a day from 75mg a day. It's only the recommended starting dose in the BNF - British National Formulary - and week 2 on the schedule you have shown me from Bath. Doing Ok today on 150mg, surprisingly - but my eyes are more dry. I wonder if that improves like the wobbliness does? My consultant said try & put up with the side effects as they do wear off.
I wonder, can any of you drive while taking Pregabalin? I don't feel able to drive very often but would like the option. Usually my husband drives and I use a wheelchair when we're out. I can walk a short way.
What exercise do people do? I need to keep my muscles working. Touching my toes and bending right down to a crouch seem to make the PN worse. Any recommendations?
I've put a signature on now so I hope it shows up OK.
Interesting that you've got Sjogren's, Poppy. It only seems to be diagnosed when it's bad. I'd had it >10years before a consultant tested for it, despite my dentist and opticians telling me I had it years ago. Auto-immune diseases are listed as possible causes for PN.
Dorothy
I wonder, can any of you drive while taking Pregabalin? I don't feel able to drive very often but would like the option. Usually my husband drives and I use a wheelchair when we're out. I can walk a short way.
What exercise do people do? I need to keep my muscles working. Touching my toes and bending right down to a crouch seem to make the PN worse. Any recommendations?
I've put a signature on now so I hope it shows up OK.
Interesting that you've got Sjogren's, Poppy. It only seems to be diagnosed when it's bad. I'd had it >10years before a consultant tested for it, despite my dentist and opticians telling me I had it years ago. Auto-immune diseases are listed as possible causes for PN.
Dorothy
Lyme Disease since 1985, ME since 1994, Sjogren's Syndrome, Nerve pain for 8 years just diagnosed in 2012. Cystitis, partly caused by PN. PN helped with Colofac MR - four a day, plus Dicyloverine as needed, plus just starting Lyrica-PreGabalin, May 2012. I've seen my GP and consultants at Furness General - Gynae, Colon for sigmoidoscopy, Urology, who has prescribed the Lyrica and recognises PN. Gynae offered a referral to Dr De Mello in Manchester but I refused. I'll see how Lyrica goes for now.
Re: Pre Gabalin
Hello-
I got my PN through a surgical mishap. I was in agony when I first saw my neurologist.
She started me on 600 mg. of neurotonin/pregabalin three times a day. After a week, it stopped the pain but I also had a headache all the time and other bad side effects (racing pulse). I was switched to Lyrica which has fewer side effects. I am now up to 200 mg, 4 times a day. I have been on it for about 9 months and have gained a lot of weight. It also makes me dizzy, dopey and forgetful. However, when I have to concentrate, I can (like driving). I also feel very unsure on my feet. I haven't fallen but I like to look down at my feet when I walk.
Unfortunately, Lyrica is hideously more expensive here in the US than gabapentin. Pfizer (the manufacturer) has a patient assisstance program but you have to be absolutely poverty stricken to benefit from it.
Best wishes,
Bathsheba
I got my PN through a surgical mishap. I was in agony when I first saw my neurologist.
She started me on 600 mg. of neurotonin/pregabalin three times a day. After a week, it stopped the pain but I also had a headache all the time and other bad side effects (racing pulse). I was switched to Lyrica which has fewer side effects. I am now up to 200 mg, 4 times a day. I have been on it for about 9 months and have gained a lot of weight. It also makes me dizzy, dopey and forgetful. However, when I have to concentrate, I can (like driving). I also feel very unsure on my feet. I haven't fallen but I like to look down at my feet when I walk.
Unfortunately, Lyrica is hideously more expensive here in the US than gabapentin. Pfizer (the manufacturer) has a patient assisstance program but you have to be absolutely poverty stricken to benefit from it.
Best wishes,
Bathsheba
Botched blowing up of bladder July/2011
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
Re: Pre Gabalin
I did reach the point where I could drive whilst taking pregabalin. As you say, nice to have the option.
With regard to exercise - what I do is walk, slowly, and not up any slopes. I do have days when it is more painful, but I have found that if I keep going then I can walk 'through' the pain, usually. Although there are still days when I am not up to walking. Other than that, I do some stretches first thing in the morning before I get out of bed, and also a few minutes of work with very light weights. I think it is important to stay flexible and as strong as I can manage.
Have you thought of swimming? (No frog kicks of course.)
Good to hear that 150mg is going well, that is excellent news. I hope that the dry eyes improve.
With regard to exercise - what I do is walk, slowly, and not up any slopes. I do have days when it is more painful, but I have found that if I keep going then I can walk 'through' the pain, usually. Although there are still days when I am not up to walking. Other than that, I do some stretches first thing in the morning before I get out of bed, and also a few minutes of work with very light weights. I think it is important to stay flexible and as strong as I can manage.
Have you thought of swimming? (No frog kicks of course.)
Good to hear that 150mg is going well, that is excellent news. I hope that the dry eyes improve.