Pregabalin and other questions

[Artistickiwi]

In December I switched from gabapentin to pregab to see if the facial twitch was caused by gabapentin - Jury is out, Dr seems to think its not as bad but wants me to wait a bit longer.

Anyway was on 150mg twice a day which seemed to work okay but have had to go off the morning dose as it seemed to make things strange (also on adhd meds recently diagnosed)

Dont really get symptoms during the day anyhow. However I'm up to 450mg at night and having to take a sleeping tablet to help sleep because stinging, pins and needles and feeling of burning similar to what I had when first diagnosed 3 years ago.

I can go up to 600mg however that seems quite a bit considering I was on 1200mg of Gaba.

I've tried to take the meds at different times before bed but doesnt seem to make any difference ( Have yet to try right before bed (last night was 9pm lights out at 10pm)

Any suggestions?

Also I note my ferritin was 142 ug/l however I was not fasted and about 11am when tested so possibly could try some of this when should I take and how much?

I have also bought some B12 as I see that was 225 pmol/l so not much above the bottom limit of 170 here in NZ - also how much and when.

Thanks in advance

[SueJohnson]

You can take the B12 anytime.

The not fasting and having the test at 11 am should not have affected your test that much. However if you didn't stop taking any iron even in a multivitamin or had a heavy meat meal the night before that would have make the difference, In addition some people think one's ferritin should be over 200.

Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

The pins and needles and feeling of burning could be side effects of the pregabalin. You probably need a low dose opioid to control your RLS instead of pregabalin since you are having these side effects from pregabalin. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed on of the others be sure you are given enough to take them that often.

To come off the pregabalin you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks.

[Artistickiwi in reply to SueJohnson]

Thanks for the feedback Sue. Do I have to come off the pregabalin before taking the low dose opioid? I did try codeine at the very beginning but dont think it helped much. I guess another visit to the GP is in order to get some 25mg of pregabalin and hopefully something else - I just have a feeling that its not going to go well the appointment that is.

I also question if in fact it is restless legs and not something like a neuropathy as I dont have an urgent need to move, maybe because moving does nothing unless I'm sitting down but "symptoms" are in the legs and am not weak

[Joolsg in reply to Artistickiwi]

rls-uk.org/symptoms-diagnosis

The urge to move is key. As you can see from RLS-UK website.

And moving relieves the symptoms.

There are many diseases that mimic RLS.

Peripheral neuropathy is one of them. Neuropathy responds to meds that treat nerve pain.

You need a referral to a specialist neurologist.

There's no point switching to low dose opioids until you know for sure what you have.

[SueJohnson in reply to Joolsg]

The facial twitching could also be a sign of neuropathy.

[SueJohnson in reply to Artistickiwi]

No you don't have to come off pregabalin

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

If you have no urge to move as you said it is not likely RLS. If you have symptoms during the day it could very well be peripheral neuropathy in which case you need to see a neurologist. Interestingly pregabalin is used for that but you would usually take it 3 times a day.

The pins and needles and feeling of burning can also be caused by neuropathy.

[Artistickiwi in reply to SueJohnson]

Went to the GP this morning not my usual. The usual talk about going on dopamine antagonists . We did chat about weather it was restless legs or not but no definitive answer there. We did talk about opioids but somehow we ended up settling with going back to Gabapentin for now as I felt that was a better outcome with symptoms. - will monitor of course

Also chatted about the facial twitch as an aside my dentist thinks it might be Tardive Dyskinesia as hes seen it before Dr dismissed it because I haven't been on antipsychotics. Anyway I have a referral for a neurologist - or will have if the Dr remembers to send a letter to one. So hopefully its one that knows about restless legs and other neuropathic things.

[Joolsg]

I agree with SueJohnson. Time to switch to Buprenorphine.

[707twitcher]

I posted yesterday asking if anyone else found that gabapentin works for their RLS, but not pregabalin. That’s my situation. It seems to be very unusual, but apparently not impossible.

You can start buprenorphine while still on pregabalin or gabapentin. Many people take both (me included).