Feedback from Pregablin users please

[MaxxRLS]

Some background, question is later (feel free to skip)

Suffered quite badly with daily RLS for the last couple of years. I think it may have been increased (from only sporadic episodes) by upping my 20mg Amitryptyline which I'd taken for ~20 years for neuropathic pain following ME to 60mg when I had shingles (this all before I'd discovered this forum and it's links to RLS)

I had gone back to 30mg, then 40mg after this. I'm now back down to 20mg but my question relates to Pregablin.

As well as RLS, for the last year I have been suffering from Burning Feet Syndrome (Grierson-Gopalan syndrome) which 'may have' a tenuous link to RLS as it also only comes on at night

my.clevelandclinic.org/heal...

After reading many posts on here, in September I went on a regime of DAILY iron supplementation, actually taking 3 x 28mg Iron Bisglycinate 2-3hrs before bed + VitC, Lp99? and 75mg VitD. I am being monitored by my GP and all good (last test was Oct 5th and > 100 iron, 39% TSAT)

I do think this helped my RLS lots, still there a little but nowhere near as bad as it was.

When I spoke to my GP(s) about my burning feet they diagnosed Peripheral Neuropathy. Whilst this has some similarities it didn't fully cover my symptoms.

To cut a very long, multi visit story short the last GP I saw (my practice gets through loads) prescibed PreGablin, 2 x 75mg to be taken 1) morning 1) night. This was mid-Oct. I did this for the first few days but as advised on here, it really only needs to be taken at night so I then started taking 2 at night, 2-3 hrs before bed and leaving a 3hr window each side from Magnesium (whicch I also now take)

It was a miracle, almost from the first night it significantly lessened my burning feet (they used to kick in about 15-30m after bed and I'd have to get up and cool my feet (standing on cold tiled floor + a bit of 'fridge work'. That didn't work sometimes and needed more and often I would wake in the night with it and have to do same.

I know it normally takes around 6 weeks? to be effective but this really was VERY quick to take effect, within a few days I was burning feet free and that had continues until a couple of weeks ago.

I then started to wake at around 4am with 'slight burning feet' which would usually just need 5-10 mins cooling, as this seemed to happen every day I managed to get a telephone appt with my GP who agreed to up my dose to 3 x 75mg. He still said 'space them out during the day' which I did for first 2 days (1 at lunchtime, 2 at night) but now I take 3 x 75mg at night (again 2-3hrs before bed)

QUESTION

Does your body get 'used to' the Pregablin and lose/lessen it's effect?

Sadly after a day or so of 3 x 75mg at night my LEG RLS seems to have come back (only at a 'medium' level). This has only been the last 3 nights, pretty much the nights I have taken 3 x 75mg. It might be a blip as have also been more stressed last few days so that may be the cause.

I've had no side-effects from the Pregablin other than increased appetite but I don't want to keep increasing if there is a lessening effect.

[Joolsg]

Pregabalin average dose for RLS is around 200mg. So with 3 x75mg it should cover RLS.But, while you're still taking Amitriptyline- the RLS will continue to worsen.

Pregabalin is used as a nerve pain med, so reduce Amitriptyline slowly. Once off Amitriptyline you can see if 225mg Pregabalin works.

You can also play around with timing. Perhaps take 75mg just as you fall asleep so it covers the 4am symptoms. And you can also increase pregabalin. Max dose is 450mg.

Pregabalin often does not work well if dopamine agonists have been used previously. That was true for me. Pregabalin made me sleepy but even with 25mg Oxycontin, it never covered my severe RLS.

So get off Amitriptyline and play with times of pregabalin.

And then increase to say 250mg to see if that helps.

[SueJohnson]

It only takes 3 weeks to be effective. It is normal to need to adjust the dose upward during the first year. For RLS the normal effective dose is 200 to 300 mg but the usual maximum dose is 450 mg and you can go up to 600 mg.

[SueJohnson]

By the way Doctors will prescribe pregabalin to be taken AM and PM for RLS because it used to be only prescribed for neuropathy.

Amitriptyline makes RLS worse for most people. Do you really need it? The pregabalin should help with ME and then s/he would probably want you to take it in the morning as well as at night. You might want to discuss this with your doctor. If you do come off it you need to taper off it.

[MaxxRLS in reply to SueJohnson]

Sue, I am reducing my Amitriptyline slowly, dropping 5mg every 3 weeks. Having been taking 20mg for around 20 years I guess my body ‘expects it’. I have been on 40mg until recently but am now in 20mg per day for the last 3 days (this may also relate to my early morning waking)

Before starting Amitriptyline 20 years ago I had ME/CFS for around 7 years. One of my main symptoms was ‘all over’ skin neuropathic pain (my whole body hurt like it was sunburnt) and wearing clothes was quite painful, Amitriptyline saved me. The pain was gone and I could then start to resume a ‘normal life’ which over a short time resolved my other symptoms and brought me out of a major ‘illness related’ depression.

There have been many times over the years where I have run out of Amitriptyline and some sensation of ‘skin pain’ has returned within a couple of days so have been loathe to give up totally. It also is a definite ‘sleep aid’. As I’ve tried to reduce from 4mg I have woken up around 30-45 min earlier each morning per 5mg reduction. I have tried previously with the same result.

I’m hoping to reduce further (slowly) and maybe getting to zero with the PreGablin hopefully taking care of my overall neuropathic pain AND helping with sleep. At the moment I’m a little concerned with my returning RLS on PreGablin and having reduced the severity significantly with my Iron regime.

I appreciate I’m still on a relatively low dose but my question was specifically does the body ‘get used to’ pregablin and need more to maintain the same effect. I was wondering if others on pregablin have noticed similar.

[SueJohnson in reply to MaxxRLS]

As I mentioned it is normal to have to increase the dose the first year. After that it may be 8 or 10 years or so ( have no specific time frame) before you need to increase it by 25 mg so at age 69 I wouldn't worry about it since as I mentioned you can go up to 600 mg.

[MaxxRLS in reply to SueJohnson]

Ok Sue thanks. Have only just got my latest GP to agree to up the dose from 150mg to 225mg so not sure he’ll be up for another rapid increase to 300mg.

I’ll persevere for now and hope things settle. The Pregablin has worked wonders for ‘getting to sleep’ which was always the main problem along with the next 3-4 hrs, waking up at 4-5am is an annoyance but not as much.

[SueJohnson in reply to MaxxRLS]

I wouldn't increase the dose to 300 mg. It should be increased by just 25 mg at a time and then given a couple days to see if that is enough. Plus as you decrease the Amitriptyline you may not need as much. so you are fine staying on 225 mg.

[amrob123]

I have been on pregabalin for over ten years. I found it took a while (maybe a year or two) to settle on the right dose for me. I haven't experienced a strong need to increase pregabalin beyond that dose.

I would recommend staying on the lowest dose possible. Like most drugs, pregabalin tends to come with substantial side effects. I'm staggered when i hear of people taking doses above 300mg.

If you need help with sleep (both getting to sleep and staying asleep), you may want to look at palmitoylethanolamide, more commonly known as PEA. It's a supplement that can be taken long term. I have been using it for approximately two months and it is the most potent supplement i have used for sleep (I have tried dozens over the years). It is also an anti-inflammatory and very helpful for pain conditions. My pharmacist was telling me that he used to work in a hospital pharmacy and it was often prescribed for its analgesic effects. I'm not sure if that extends to neuropathic pain, but certainly worth looking at.

It takes several weeks for PEA to be fully effective.

[amrob123 in reply to amrob123]

I just came across this in a Facebook group. It suggests that PEA can help with neuropathic pain.

PEA supplement

[MaxxRLS in reply to amrob123]

Thanks amrob123 I’d not heard of this. I actually had a very good nights sleep last night, a full 8hrs with no early wake. It may be more to do with 2 nights of max 5hrs sleep but I’m not thinking of changing anything currently.

Pregablin has revolutionised my ‘Getting to sleep’ issue, I’d have some nights where, 30 mins after bed I’d be up walking and cooling my feet on cold tiles, even popping them in the fridge. Back to bed then up again an hour later then maybe a 3rd time. That was 5 out if 7 nights, then a ‘reasonable’ one and if I was sleep deprived enough I’d get a full nights sleep.

As I said, some of this early wake issue maybe the reduction in my Amitryptiline, 12 weeks ago I was on 40mg, now on 20mg. The goal is to come off completely but ONLY if the Pregablin also stops my overall skin neuropathic pain.

[Oscarcat63]

Hi !I have been on pregabalin for around 18 months now.

My initial dose was 75 mg at night, along with a DA. At around the 11 month mark, I noticed that my rls symptoms began earlier in the day, and spread from my legs to my arms; I now know that I was augmenting - as I had chanced upon this group. I was on a low dose of the DA, and since I had not been taking it for an extended period, had little trouble discontinuing it.

However, I also developed lower-back pain (likely due to age related changes) and doubled my dose of pregabalin. I did not like my gp's attitude and found another.

He decided to keep me on pregabalin, but added 10mg of amitryptaline, with 25 mg of pregabalin to be taken in the morning. I lasted 21 days on the amitryptaline and stopped taking it. I then doubled my dose of pregabalin to 300 mg at night.

I cannot find any robust studies stating that amitryptaline + pregabalin is much better with regards to pain, than pregabalin alone, but it would vary between individuals

You have asked if one's body 'gets used' to pregabalin - I am sure that one does build a certain tolerance to it - and just like any medication, (again) the optimum dose will vary between individuals. I have found that it controls my rls, 90% of the time...I can not attest to its affect on pain however. For myself, it does little; yet I am sure I would be worse without it.

Depression is a horrible illness and it is also one of my diagnoses, but there are other antidepressants out there which do not affect rls. Sue Johnson can give you a list

[bluffpt]

Hi I am also in the UK. I have had RLS for many years, i'm 59.

Re. Timing. In my experience GP's often advise Pregabalin to be taken in 2 or more doses as this I believe is "recommended". I asked mine to consult a neurologist and he agreed with my logic that it should be taken in one dose about 2 hrs before bedtime (given my symptoms only occured a night and given the time Pregab takes to effect and it's half life).

Re. Dosage. My understanding is the dose response of many drugs incl. Pregab is non-linear. So for example, you can take 100mg and it has only a small effect, then 125 and still only little effect, then 150 and little extra effect. But then the next increment to 175 has a substantial effect.

This was my experience: I changed from Ropinirole after 2yrs to Gabapentin and then tried Pregabalin. I was on Pregab at 150mg and some effect but still RLS was quite bad, then upped to 200 and same and then 250 etc. At 350mg i suddenly found that RLS was much better, and have been on 350 for about 2mths now.

So bottom line, for me was finding the dose that was effective, by increasing incrementally.

As an aside, I believe the max dose for RLS to be 450mg.

Finally I would add that i feel zero side effects from Pregab. (I wish i had the one that appears to make people feel drowsy!)

[SueJohnson in reply to bluffpt]

The reason GPs say to take pregabalin in 2 or more doses is that it is prescribed for neuropathic pain which would require more than one dose and since it is prescribed off label for RLS doctors who don't know much about RLS prescribe it as suggested.

[Islay9]

I take 450mg pregabalin which is written in some places to be the max but actually it’s 600mg. (Which I was offered by my neurologist recently)

I think as some have said here it’s more about finding the right dose for you. I believe it takes about 3 weeks to see if it’s effective. I was impatient and think I probably went up to quickly and hope to reduce a bit in time.

So in answer to your question imo once you’ve got the right dose you stick to that and you don’t need to keep increasing.

That said, for me, the pregabalin makes me sleepy and I think gives me a deep sleep. But it’s the dihydrocodeine that switches off my legs. So part of me thinks that I could just take that without the pregab…

[SueJohnson in reply to Islay9]

If you decide to reduce drop by 25 mg every 2 weeks to avoid withdrawal effects.

[Tailwind53]

Hello from Ga.

I take pregabalin for RLS and have been on the same dose for over 9 months - in capsules of 225 & 50 mg. Prior to the increase of 50 mg I had been taking pregabalin 225 for 2 yrs. Prior to being prescribed pregabalin I was taking gabapentin will some relief but not as effective as the pregabalin. So that’s my experience; I’ve only needed a very slow increase in the pregabalin. The side effect of a slower metabolism is t great but at least I can relax and then go to bed and sleep through the night