I’m on 75 mg of Pregabalin - stable dose for 5-6 weeks . Side effects of nausea , headaches seemed to de-escalate late in week 5 . Now the key side effect remaining is a slightly depressed feeling if not doing anything and a sense of apathy so it is resulting in a form of mood change that seems to ebb and flow from afternoon onwards . Overall It is helping my sleep , I would say this dosage is 40% effective. Last night was 2 wakeups by feet offset by 9 mins of walking in each instance so I got 8 hrs . The night prior to that I woke up every hour and had about 3 hrs sleep. The neurologist has in past 2 weeks added Clonezapam at half tab dosage which has helped a bit with no side effects and I could go up further on this drug also.
So the question is where from here - go up another notch on either or both drugs, discontinue them both and take nothing , try a new combi ? It seems very hard to imagine how I could get to 250-300 Pregabalin which seems to be the dosage that works typically?
prior to taking this drug I was 6-7 weeks off ropinirole - my nights were a fragmented mess with 3-5 hrs sleep however bizarrely I felt felt pretty good during the day with none of aforementioned side effects . The lack of sleep is of course probably seriously damaging my health irrespective.
Views appreciated esp from those who have taken Pregabalin , had issues with early dosage but cworking! Can the situation on side fx improve further over time for example. My disaster scenario is to keep going up , have side fx that don’t go away and then having to take months to get off it like that bad ropinirole experience most folk have had.
Thanks For all views shared before I talk again to my neurologist here in UK end of this week
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You might want to try switching to gabapentin. Although they are basically the same drug, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. An equivalent dose of gabapentin would be 400 mg - actually that is just slightly below what you are taking of pregabalin. Ask for 100 mg capsules and if no side effects that bother you try increasing by 100 mg every couple of days. I have already given you how to increase above 600 mg but if you need me to, I can give it to you again. The other thing is you could take trazodone for your depression which helps RLS in some people.
Thanks Sue. The switch is a worth considering. I have to say I’m not very keen to use another drug to reduce a side effect of a drug I’m taking! If it helped with RLS tho I guess that would be a logic as you say. Perhaps get rid of Clonezapam , try Tradazone. My normal mental state is the polar opposite to depression even when things go bad so there’s plenty of irony here.
I’ve been on 150mg of Pregabalin for about 5-6 years now. I have never felt the need to increase it. I have some extra 50mg tablets just in case but I rarely use them. I’d say I have very good coverage most of the time. Of course I get the occasional break through but it’s usually if I’m anxious, have eaten something I shouldn’t have, I can normally trace it back.
Any side effects faded or reduced after a few months. I put a bit of weight on initially, had balance issues at night (which I still do a bit) and feel a bit sleepy during the day. But I always did when on ropinirole because I wasn’t sleeping!! So I’m more than prepared to put up with a bit of daytime sleepiness for calm relaxed legs at night. There’s no contest!!!
Could your low mood still be the after effects of the ropinirole? I don’t know how long you were on it or what dose but the long term after effects can be horrendous. And 75mg of Pregabalin is a very low dose. I went from 50-100-150mg in about 6 weeks.
Hi Pam Thanks . I don’t think so but it could be . I felt fantastic In the first 7 weeks post ropinirole cessation. In fact every day from starting to reduce ropinirole 3.5 mths prior I felt a little better! When I went on 50 mg of pregabalin my mood flattened and on 75 has become problematic/ erratic . It could be coincidental as you say and a delayed post ropinirole effect. I may go up one more step and see w happens - perhaps not much to lose by doing so really. Glad it hear it works well for you and at lowish dosage too
I was on 150mg pregabalin for 4 years ( plus 25mg Oxycontin). The side effects of double vision, dizziness and leg swelling settled after 2 or 3 months. However, pregabalin and Oxy never covered my RLS after getting off Ropinirole so I slowly reduced pregabalin over 9 months by 6.25mg every 10 or 12 days. Zero withdrawal symptoms going that slowly.Your main side effect seems to be low mood. That can be a symptom of withdrawal from Ropinirole. Look up DAWS. It's very real and can take months to settle. I don't think it's pregabalin causing the mood change; pretty sure it's still dopamine agonist withdrawal syndrome.
If I were you I would increase pregabalinto 100-150 mg and get the best RLS /sleep cover. Then see if the mood/apathy settles- bearing in mind you've been on a dopamine agonist for years and suddenly dropping your dopamine hit will produce low mood.
If it doesn't settle you could discuss adding trazodone or wellbutrin, which are safe anti depressants for RLS.
Thanks - interesting stuff ! You clearly had a tough time with some of those drugs . I will give you some supplemental info to see if it changes your view! I was on ropinirole for 10 mths - max dosage reached 1.75 . I was v sensitive to it and augmented at close to 0.75mg in retrospective. Augmentation and side fx were ugly however perversely reducing slowly was great and at cessation I had no big problem at all . I got better and better as I reduced the dose ! I then went 7 weeks 100% drug free and felt great . I then started pregabalin 50 mg and felt a mental numbness with increasing apathy at 75 and occasional moments of of what I can best describe as desperation later in day - this has subsided and now it’s 80% apathy /20% low mood feeling . If what you suggest is true it means I’m getting an after effect from ropinirole 2 mths post a clear period of not taking such a drug . Do you think this is possible ? If so this is pretty nasty . My gut feel is it’s the pregabalin as it linked to depression also but it’s clearly not the only possibility What I definitively take tho is I need to be patient with pregabalin and see how these effects evolve with time . At the moment it’s a pain but not disastrous so I can afford to persist for longer
That additional info is very helpful. You were drug free for 7 weeks.It would appear you're someone who could manage RLS without any meds at all.
If your RLS didn't bother you in that time, then you should try going med free. Why did you start pregabalin?
Keep your serum ferritin levels above 100 and see if you can manage without meds.
Reduce the pregabalin by 6.25mg every 7 days ( split the 25mg capsules and divide the powder). You'll be off it in 12 weeks. Or reduce by 12.5mg every 7 days and you'll be off in 6 weeks. If you get any withdrawal symptoms you can take the slower route.
The withdrawal effects of Ropinirole usually start while reducing the dose and so yes, you would probably have noticed the depression & apathy during that 7 week period.
A good question. With no drugs in the 7 wk period the RLS still woke up me up every 60- 90 mins and have to walk 10 mins every time at night to get back to sleep and I manage to get 3-5 hrs broken sleep. I effectively have a nightmare night and bizarrely have a reasonably good day despite lack of sleep. Such disruption has to be damaging my health also on an ongoing basis. So in short I seem to be able to get by however who wants to live like that if they can find another way ?
That is not good at all. That sounds 40/40 on the international RLS scale.If you aren't happy on pregabalin there are 2 ways forward. Get full panel bloods taken and raise your serum ferritin above 100, preferably 200. There are a few hospitals in the UK that will now give Injectafer iron infusions to raise ferritin levels more quickly.The majority see a dramatic improvement in symptoms.
Ensure you're not on meds that trigger/worsen RLS like anti depressants, anti histamines, beta blockers, statins and PPIs.
If raising iron levels and stopping trigger meds doesn't improve the RLS, consider switching to gabapentin. It's a similar drug to pregabalin but some people find they have fewer side effects ( and vice versa- gabapentin gave me terrible side effects ).
Alternatively, low dose opioids are very effective for RLS. Codeine, tramadol, oxycontin and Buprenorphine. Many doctors refuse to prescribe opioids but Targinact ( Oxycontin & naloxone) is licensed for RLS in the UK.
It's a case of trial and error to find what works for you and gives the best RLS cover & the most sleep with the fewest side effects.
Thanks , yes I think im going to push the current pregabalin / clonezpam combo a little further Iand if it doesn’t work or I can’t handle it , it’s iron infusion - had my bloods done and iron is above 100 . The measures are all fine for a normal context. Both Gp and neurologist are anti iron infusion quoting side fx etc ! Can a neurologist recommend an iron infusion or will I need a haematologist referral as well?
Depends on the neurologist. Prof. Walker at Quuen Sq London will refer for iron infusions. Prof. Chaudhuri will not as he thinks serum ferritin above 75 is all that's required.It's becoming more clear that levels above 300 are needed for some RLS patients but there's no research at all in the UK and they won't accept evidence from US studies. Frustrating.
However, I contacted the haematology department at St George's directly with evidence on iron infusions for RLS and they had a team meeting , agreed the evidence was compelling, and then asked me to send a GP referral letter.Sadly didn't work at all for me but statistical evidence shows 60% will have dramatic improvement in RLS so the odds are good.
HiI was on pregablin for about 10 months with several side effects which I kept thinking would disappear. It never really fully covered my RLS but helped me to sleep a little better so persevered. Headaches pains behind eyes etc eventually I realised they it was more than just blurred vision I was getting and tests found that I had in fact lost a lot of my peripheral vision. Had to taper off vision never returned. I now take 1mg (half tablet) of clonazepam ever other night. Not perfect and am fi ding it more and more necessary to increase to get a reasonable night's sleep. Have been prescribed targinact but worried about taking the next step to opioids and putting it off as long as possible.
As most people will tell you here we all react differently and for many pregablin is a great drug but just monitor you side effects carefully.
75mg pregabalin a day is a low dose so it might be worth doing as Jools says and increasing the dose to see how it works for you. Then at least you have given it a proper go and will know whether it's any use for you. Pregabalin isn't too hard to come off (for me anyway) and theoretically it has no long lasting effects although I'm not 100% certain. I took it for neuropathic pain for a year and took 300mg a day, starting with 150mg a day for a week and then doubling. I felt the drug didn't really help until I was at 300mg and at that level it was useful although I can't recall how much it did for my RLS, it was certainly less of a problem than it is now. I came off it because it does have a tendency to make you feel slightly foggy, similar to having a couple of drinks and can disinhibit you as well similar to alcohol but generally I was able to function pretty normally and I found the fact that it reduced anxiety very useful to allow me to look at my situation more calmly. I came off it because of the above effects and an occasional odd effect where I stalled when initiating speech in busy social situations. Coming off was straightforward, the main thing being to take it slowly to get use to the change without worrying too much. I did it over several months. I'm aware that if no treatments emerge for RLS then I may one day need to go back on it which won't be great but if I can't sleep it's an acceptable trade off.
Pregabalin and clonazepam both affect my mood (which when unmedicated, i'd describe as buoyant). Pregabalin has a flattening effect and reduces motivation (I take 300mg) . Clonazepam has a depressant effect for me which is why i limit it to no more than 0.25mg. These effects aren't so bad that i need to discontinue the medication however i do know of a couple of people who can't take pregabalin because they feel depressed on it.
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