Pregabalin and B12....: Hi – I’m not... - Pernicious Anaemi...

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Pregabalin and B12....

Monimoni04 profile image
13 Replies

Hi – I’m not really sure how to ask about this but I have been on Lyrica (Pregabalin) 100mg - 300mg since 2010 – prescribed after years of testing and trials of other meds to try and alleviate the pain for a diagnosis of Chronic Migraine and Occipital Neuralgia. It doesn’t help the pain, I take it more to help me sleep. In July 2016, I was diagnosed with PA, given loading doses, followed by monthly injections. Thanks to this group, knowing this wouldn’t suffice, I have been SI since August 2016 (along with co-factors). I appeared to get off to a great start where the pain eased quite a bit (Sept 16) and having more good days than bad. However the past 5 months are almost back to the ‘old days’ where the pain is particularly bad and my GP has increased the Pregabalin to 300mg. Although I also believe stress isn’t helping, I’m wondering whether or not Pregabalin is restricting my B12. Thank you.

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Monimoni04
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13 Replies
jillc39 profile image
jillc39

goodness me I hope not. I have been prescribed pregaberlin for about 2 years - my neuropathy is very very slowly improving - thanks to b12 I think. I shall be most interested to read other posts.

Sleepybunny profile image
Sleepybunny

Hi,

Some links that may be of use

b12deficiency.info/what-are...

ncbi.nlm.nih.gov/pubmed/212...

Monimoni04 profile image
Monimoni04 in reply to Sleepybunny

Hi there Sleepbunny thank you so much for this response you guys on here are absolutely amazing 😉 x

Gambit62 profile image
Gambit62Administrator

from the abstract quoted by Sleepybunny the implication seems to be that pregabalin may cause absorption problems rather than actually interfering with the action of the drug though it isn't clear from the abstract (going for oral supplementation). If it is absorption that is affected then that would mean that it isn't going to affect B12 if you are getting your B12 from injections. However, as I say, not clear from the abstract exactly what the cause of lowering of B12 and folate levels is.

Monimoni04 profile image
Monimoni04 in reply to Gambit62

Thank you 😊 I sincerely appreciate your response 👍🏻

Ree2705 profile image
Ree2705

Hi Monimoi04,

I can't add any scientific info to my response, only anecdotal. I too have Occipital neuralgia, amongst other things, and was prescribed Pregablin; it made no difference to the pain - despite the dosage being increased.

However, after about 2-3 weeks of taking it I started to notice some strange side-effects that I didn't at first attribute to my B12 levels, as they were symptoms I had not really experienced before. By about week 6, I was so depressed I was crying almost continuously and having very dark thoughts of self-harm (never felt like it before), my neurological symptoms were horrendous and the pain from the occipital neuralgia worse then ever. The most frightening symptom was my loss of cognitive functioning and the fact I could get to the end of the day and not remember what I'd done all day. I then found myself in my car unable to remember how to drive!!

At this point a little bell went off, somewhere in the fog, and I did some research that pointed towards B12 and pregablin, and its potential to cause absorption issues. I had to wean myself off the drug because it is dangerous to just stop taking it. I then had a scheduled B12 shot and upped my sublingual dose of B12. I somehow convinced my GP to give me 6 weekly shots, but then started SI. Almost immediately after the first B12 shot my symptoms improved and by the next B12 shot all of these symptoms had reverted to their pre pregablin state.

So for me, I can only conclude, that the medication was interfering with my ability to absorb / use B12, even though my B12 source was injected and not oral - leading me to conclude it's not an absorption issue but an issue with the body using B12 when taking Pregablin. However, there is no medical evidence to support this, just my own personal experience, which was horrendous.

On a side note I find amytriptylin to be more useful in helping me to sleep through the pain of the occipital neuralgia, although my current neurologist thinks it may be hemicranium continue as opposed to occipital neuralgia - I would just like to know the cause of this debilitating condition, whatever it is!!

Finally, I hope you can get back to having more good days than bad. Having occipital neuralgia has had a substantial effect on every area of my life, to the point where a good day is almost cause for celebration.

Mx

Tracy55 profile image
Tracy55 in reply to Ree2705

Hi Rees2705

I think I may be experiencing the same simptoms I have been taking pregablin for around 5-6months ruffle , my brain is so mixed up . When I first started taking it it did help with the pain , but now wow not sure if it is making me worse because having B12 injections . I feel like I'm turning into a loony . I'm crying all the time I have pain from my neck operation , back, arms legs, stomach , and still have every simptom of B12 deficiency , PA , plus not sure if I have cealiac disease .(thank god this does spell check) I have been feeling so stupid and useless , not realising I'm repeating myself 20 times to my kids . I read on a post standard treatment per BCSH guidelines is actually 3xper week injections . I am hopeless with technology my 25 year old son has to sort my I pad out for me and even logged me on to healthunlocked because I have no idea what to do . I have been telling myself for 30 years I'm not interested in things or learning , just had to get threw the days , I have been in pain for years .i want my life back . Thankyou for your post .

Ree2705 profile image
Ree2705 in reply to Tracy55

Sounds like you are having a rough time Tracy55. All I can say is I have been on just about every pain medication out there and have many unpleasant side effects with them all - some worse than others. I had to conclude that there was no point making my life even more miserable taking medication that didn't work or at best only provided minimal relief. I have found Diclofenac SR 75mg taken with 2 paracetamol works as well as anything else, but most importantly there are minimal side effects (acid reflux so Ranitadin help). I find staying in control of my health, as opposed to it controlling me, helps me feel better and more 'normal'. It's also very hard on family to live with someone who is in pain all the time, so keeping happy helps all round - easier said then done I know!! It's so very frustrating, but I live in hope that it will get better. I hope things improve for you as well.

Mx

Tracy55 profile image
Tracy55 in reply to Ree2705

Do you mind if I ask you do you ave any spinal problems . You mentioned being on loads of meds in the past I was wondering if you suffer from nurve damage . Aswell as all of the b12 and PA . I have Addison's Disease . I also take the ranitidine . And have been on OxyContin and oxynorm in the past but have changed to mattrefen plaster ,pregablin, cocodomol . And they all are head ----s. Do you know anything about the injections and if a person can have them every other day . I have been looking and reading up about them all day .

Foggyme profile image
FoggymeAdministrator in reply to Tracy55

Hi Tracy55. Just been reading some of the replies you've left...you really are having a rough time and yes, I do think you need more frequent B12 injections.

When neurological symptoms are present the regime is 6 x loading doses on alternate days and then Injections every other day until there is no further improvement - for some people, this can take many months.

Your GP may not know this. The treatment regime is contained in a book called the BNF (the doctors' prescribing bible) and she/he will have a copy on their desk and can look it up. It's the second item down so they may have to read further than most usually do.

If you take a look at the PAS pinned posts to the right of this page when you log on (or at the bottom if using a phone) there's lots of information about the PA and its treatment that will perhaps help.you to get more frequent injections from your GP. This is especially important as you have neurological symptoms.

Also - just wondering if your GP has referred you to a neurologist for further investigations/MRI scan of you head and spine?

Sorry it's late so I have to go now...if you want more information or have trouble getting appropriate treatment from your GP (I.e. More frequent B12 injections) please do make a post and people will be along to offer support and advice...and more guidelines that you can take to show to,your GP 😀. (Note that you haven't posted yet - all you need to do is click on the green 'write a post' button, fill in the title box (something as simple as - 'new and need help' will do it, tell folks that you have a B12 deficiency PA diagnosis and explain why you're struggling and what advice and help you need. Lots of people here who'll be along to help. Also - more people will see your post and you'll get more help - the only people who will see what you've written here are those who look at this particular post.

Take care and take heart x

And apologies to Monimoni04 for 'hijacking' your thread...but I think under the circumstances you probably won't mind 🤔😉🙃

Sleepybunny profile image
Sleepybunny in reply to Foggyme

Link to BNF info

evidence.nhs.uk/formulary/b...

Ree2705 profile image
Ree2705 in reply to Tracy55

I don't mind you asking. I have a tethered spinal cord and cervical spondylitis and neuropathy in my legs and feet. I am due to have some nerve tests at the end of the month. I also have diverticulitis and had 18" of colon removed 3 years ago. When I discovered my B12 deficiency my GP declared she'd found all the answers to my occipital neuralgia and then proceeded to allow me one injection every 3 months!!!!

Regarding the injections, I did them every other day for 3 weeks but there was no improvement in my neuralgical symptoms so I inject every Monday.

Hope this helps

Mx

Monimoni04 profile image
Monimoni04 in reply to Ree2705

Hi there Ree2705, I'm overwhelmed with your response thank you sincerely. I wish I had of posted my concerns earlier! x

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