Pregabalin impact and tolerance

[LFIT]

hi

I started on Pregabalin about 3 months ago

I’ve been on a slow buildup with Pregabalin ( now 100mg ) now accompanied by 250 mg Clonezapam partially due to nasty side fx that take about 6 weeks to become tolerable and because I want to keep the dose as low as I can for as long as I can ie the minimum amt needed

100mg Preglabin / 250 mg clonezpam has been the first level of these drugs that stepchanged reduction of my rls to an entirely tolerable level however after 8 weeks of being at this level the positive impact seems to be wearing off ( and the little side fx left disappearing too!) suggesting my system is adapting to the drug. It’s still better than the lower level of 75mg ( so far)

To those who have had experience of Pregabalin , I know this dose level is still low however has anyone had a situation where they have had a positive impact wear off at such low levels and more importantly should I keep increasing Pregabalin dose ie 125mg would be next step up.?

Also what about the Clonezapam - should I take that to 500 in combi or instead?

My concern is if I’ve showing evidence of reduced impact at such low dosage that I might be not be suitable for this drug.

Don’t worry I’ve asked my neurologist the same question and am awaiting his answer however I would not have got to Pregabalin without help of this board ( not the neurologist who just rubberstamped it) so I value folks knowledge and experience here as fellow users / triallists!

Thanks in advance

Leslie

[SueJohnson]

I had the same thing with gabapentin. At first 900 mg worked, but I then experimented with it to see if I could also take some before my nap. When that didn't work, I went back to 900 mg but that no longer worked and I eventually increased it to 1500 mg (which interestingly enough took care of my RLS during my nap) and I have been on that for over 15 months without having to increase it.

[LFIT in reply to SueJohnson]

thanks - good to hear you have your situation under control . Any perspective on increasing clonezpam to 500 alongside upping the pregabalin ?

[SueJohnson in reply to LFIT]

Not really.

[Hidden]

100mg is a relatively low dose of pregabalin. Several papers suggest that the mean effective dose is just over 300mg.

I think you'll find that many have had a similar experience in that a very low dose of pregabalin brings relief but then the dose needs to be increased until an effective dose is found. This doesn't mean you'll have to keep increasing indefinitely. It just means that you're still finding the right dose for you.

[LFIT in reply to Hidden]

Thanks , I will persist . Any views or experience on boosting clonezpam in sync ?

[Hidden in reply to LFIT]

Pregabalin should work on its own, especially if you're having some success with a lower dose. Is the clonazepam to initiate sleep?

I have used clonazepam in conjunction with pregabalin as i didn't wish to increase pregabalin beyond 300mg. Tolerance does build with clonazepam meaning you need more and more over time. Benzodiazepines really aren't recommended long term and should only be taken on that basis if really necessary.

I have found that clonazepam increases daytime sedation, lowers my mood and makes waking difficult. I only ever took 0.5mg at most. Over the past few years I have also experienced considerable daytime fatigue following any exertion (meaning I need to rest for a couple of hours during the day) which is most likely linked to the medication I take.

You could try coming off clonazepam and seeing if pregabalin works on its own.

Should you come off clonazepam, it should be done very, very slowly, particularly if you have been on it for any length of time.

[LFIT in reply to Hidden]

thanks , I presently take half a tab 250mg of clonezapam which I cut fown from a 500 mg tab . Is it possible to come straight off that amt or does it have to be cut into even smaller portions?

[SueJohnson in reply to LFIT]

I assume you mean .25 mg. When I came off clonazepam, under a doctor's supervision, I reduced by .125 mg every 2 weeks. You can get these - they are called clonazepam dissolving tablets.

[LFIT in reply to SueJohnson]

I mean 250 micrograms - apologies ! So in theory I could get off this drug in 4 weeks. Was it easy in your case or a tough experience? I’ll checkout the alternative format

[SueJohnson in reply to LFIT]

It was easy.

[Joolsg]

You say that the side effects of pregabalinhave disappeared as well which is very good news

As Amrob advises, an upwards adjustment is often required in the first year of taking RLS drugs to find the right level. 100mg is still on the low side for pregabalin so you have room to increase.

It doesn't mean it will stop working again. I suspect you can increase and will get the benefits for many years.

[LFIT in reply to Joolsg]

thanks , this is also my view - any experience/ perspective ongoing from 250 to 500mg of clonezapam in sync with increasing the pregablin ?

[Joolsg in reply to LFIT]

I would increase pregabalin first as clonazepam does have a tendency to lose efficacy more quickly.

And it's always advisable to change just one med at a time.

[LFIT in reply to Joolsg]

thanks

[Doctorplacebo]

Can you specify what side effects you are having, or had, with pregabalin?

I am curious because I just started pregabalin 3 nights ago--25 mg first night, 50 second night, and 75 mg last night and had some really bad mood changes during the day after the first 2 doses , but not after the 3rd.

Wondering what to expect down the road...

Thanks.

[LFIT in reply to Doctorplacebo]

first of all I went up by 25 mg every 4 weeks not every day which is radically slower than you

Even with that slow pace , I have had significant afternoon tiredness , occasional anxiety and irritability ( I’m a very even mood kind of person!) , an afternoon downer , occasional headaches , increased appetite - all of these have typically taken 6 weeks after each 25 mg up weight to calm down and become acceptable ( not 4 weeks which is an expectation for side fx to subside ) . They have repeated every time I go up 25 and then dissipate over time . I have also had a certain degree of mental numbing to highs and low however again that had eased

At least it’s predictable in my case . If I did your pace I think it would have had a big impact . Everyone reacts a bit differently- we just see averages in reports . My only suggestion is go slow and be patient

[SueJohnson in reply to Doctorplacebo]

You should wait 3 weeks before increasing it as it takes that long to be fully effective. Then you can increase it by 25 mg every couple of days until you find the dose that works for you. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.

[SueJohnson in reply to Doctorplacebo]

Some more info: If you take magnesium, take it 3 hours before the pregabalin. According to the Mayo Clinic Algorithm on RLS most patients require 200 to 300 mg of pregabalin. Have you had your ferritin checked? Improving it to 100 or more helps 60% of people with RLS. If not, post back here and we can advise you on how to take the test. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

[Doctorplacebo]

Wow! Thank you so much for the advice! I had no idea such a small increase in dose needed to be done so gradually. Gabapentin is typically prescribed 100 mg 1st night, 200 second and 300 third (for herpetic or peripheral neuropathy) so I thought pregabalin would be the same.

I have had all the emotional and mental side effect LFIT describes.

Since I am at 75 now and having side effects do you think I should stay at 75 and ride it out or back down to 50 or 25?

Yes, I checked my ferritin. Initially 41, took oral Fe++ x 3 months per algorithm but saturation still low at 18 (ferritin 114 but I was recovering from COVID!), then manipulated my doctor to give me IV iron about 3-4 weeks ago (Feraheme 1000 mg).

Can't say if the iron is helping yet because I have been changing my meds so much. Will recheck ferritin,etc at 8 weeks per algorithm and see Dr. Winkelman ( MGH, Boston) for a new patient zoom visit Nov. 21.

I'm looking forward to finally seeing an RLS expert since I am tired (exhausted) from trying to manage my own care (poorly) and make all my own medication decisions. But that was necessary since I have had no doctors who knew how to manage RLS.

[LFIT in reply to Doctorplacebo]

Hi

The question on whether to stay at that level of 75 now you have got there so quickly is not easy to answer

I have ZERO med experience so can only speculate.

If your symptoms are manageable then it may be worth considering sticking it out , if not perhaps reduce by 25 mg?

What I can say is the side fx can fall off quite quickly after a sustained period on a positive note - in my case that was 6 weeks which seems to be longer than the norm.

I did come close to the point of coming off the drug however have stuck with it on advice of folk here as found side fx quite difficult esp the downers as I’m quite a positive person by nature so it really jarred. If the side fx had not faded , I don’t think I could have kept taking it

I’m about to go up another 25 mg and set to grit my teeth again for 6 weeks as an aside, but at least I know what I’m in for which helps quite a lot now

Fyi Im aged 60 with no other health issues/ drug prescriptions beyond this damn rls so I may not be a good example.

If you were experiencing any balance issues ( risks increase with age and dosage I think) that would defo be a signal to reduce

Good luck!

[Doctorplacebo]

Thanks again. This forum is such a great resource. I, too, have no other health problems or balance issues. I am 63. I guess I will stay at 75mg since I am eager to get some sleep and am so used to feeling crappy that I guess you could say I am tolerating the side effects okay.

Actually this morning I was strangely euphoric and hypomanic with so much energy I had to go for a run to blow it off, despite a typical lousy night's sleep. No idea where that came from. By afternoon, as you experienced, I faded away but not too bad. My anxiety came back a bit in the afternoon but stayed just under the surface and no depression or SI.

But on another note, I can ditto what Amrob said about clonazepam. I very carefully weaned myself of 0.5 mg (500 mcg) but halving and then quartering tablets and my daytime somnolence has improved dramatically. Evidently clonazepam has a half-life of 40 hrs (!) so it can really build up in your system if you take it daily and it would be easy to think, as I did, that one's sleepiness was entirely due to poor sleep when in fact it may be due to the medication. Very glad I got off it.

But please, do it under the care of your doctor. Sudden benzo withdrawal is not just unpleasant, it can be very dangerous and can cause seizures. (Says the former ER doctor who just foolishly increased his pregabalin way too fast!🤣).

[LFIT]

thanks that’s very interesting re clonezpam. I’m on 250 mcg and waiting to get the pregablin level right / stable again before weaning off it as you describe . I was aware of the 40hr shelf life which as you say means it can really build up