Hello again my restless friends. On Dr Jose Thomas’s recommendation my GP prescribed Pregabalin which I’ve been slowly increasing dosage and am now taking 250mg 2 hours before bedtime and am due a review by my GP as he wanted to see me before I reached the 300mg dosage. Anyway can anyone advise on the side effects and how long they take stop being a problem. I’ve now been off Ropinirole since 17 October which is when I started to take Pregabalin and everything else was fine up to 150mg when the following occurred.
Very swollen legs and ankles, causing painful joints. Extremely dry mouth only helped by chewing gum or sucking sweets. Blurred vision, not bad enough to affect my driving but enough to make reading difficult, but newspapers almost impossible. Finally extremely tired around 3 in the afternoon when I fall asleep in my chair or even standing.
Am now RLS free during the day and early evening which is a massive relief but RLS still wakes me in the early hours when Solpadeine helps and usually drop off to sleep again after an hour or so to be woken again anytime after from 4am when my day usually starts. Any one know how long side effects can last or if they are life long.
Thankyou for any comments and best wishes HipHop1972
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Side effects may go away when you first start taking pregabalin, but side effects when you increase the dose do not, You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, 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. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
If you decide to come off the pregabalin (gabapentin) you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg (100 - 200 mg) every 2 weeks.
Hi Sue, thank you for your reply, I’ll have a word with my GP but if symptoms are basically the same then it seems little point in changing. Joolsg has as replied as well so think I’ll contact the. Specialist Dr Jose Thomas and ask him to write to my GP about Buprenorphine which was discussed during our consultation then my GP or the surgery may actually permit it.
We live in hope, best wishes Sue. Don’t forget to have your chimney swept for Santa mine is sorted and swept but if I’m not a good lad then he’s just going to go straight past, oh well 🤣🤣
I switched from Ropinirole to 150 mg pregabalin and 25mg Oxycontin.I had terrible vision problems every morning for 2 or 3 hours, nausea, dizziness and swollen lower ankles.
The vision and swelling wore off after 2 months, so hopefully, they will wear off by Christmas.
However, the RLS was NEVER controlled. My RLS was a thousand times better than when I was on Ropinirole, but I still had 2 hours RLS from 8 -10pm in the evening and would be woken each evening 2 or 3 times for 20 minutes. I could do stretches and squats and then sleep.
Dr Buchfuhrer believes pregabalin and gabapentin simply do NOT work for many of us who have been on Dopamine Agonists for years. Maybe he's right.
That's why I switched to Buprenorphine.
If pregabalin side effects do not settle by mid December, discuss Buprenorphine with your GP. I know many will not prescribe it unless a specialist confirms it's suitable. Dr Thomas could ask your GP to consider it.
Another possibility is to add a small dose of opioids to the pregabalin, and take the dose just before sleep to stop you waking.
Codeine 30mg might help.
It's still early days for you. The withdrawal symptoms from stopping Ropinirole can take months while your dopamine receptors calm down and settle.
Don't waste 5 years like I did though! Professor Chaudhuri kept telling me there were no other treatment options and I foolishly believed him. He said 4 hours broken sleep was the best I could expect.
Pushing for Buprenorphine was life changing for me.
So, consider asking for 30mg codeine to take last thing at night. Two meds at low dose often work better.
If by the New Year, you are still getting side effects from pregabalin and still waking with RLS, discuss a switch to Buprenorphine with Dr Thomas and your GP.
Hi Joolsg, thanks for your reply, Sue replied as well, you two are certainly on the ball. As I said to Sue, I’m going to contact Doctor Jose Thomas and request he writes to my GP about Buprenorphine. So let’s see what the outcome is and I will post the outcome on the Forum.
With my best wishes Joolsg and up the Revolution ha ha
It's getting tougher out there! Doctors we thought were allies are now changing their minds about Buprenorphine, and refusing to prescribe it because it causes tooth problems for a few people.They're also still prescribing dopamine agonists!
So next step will be direct action! Chaining ourselves to railings etc.
What a great idea I’m up for that, we can all be jumpy together proving the point with a joint CAN CAN as apposed to their CANT CANT or WONT WONT 😡. Just on a delicate note, would the chain be long enough to reach a loo. ha ha
You have had the key information form Sue J and Joolsg but i thought i would add my experience to the party (and support direct action of course!!).
After suffering very severe augmentation (mainly from rotigotine patches) and getting nowhere with my surgery I stopped DAs in August and followed Jools advice and am currently on:-
Pregabalin 200mg Pregabalin and 25mg /day of oxycodone.(i am now sort off reluctantly supported by my GP on this plan)
I get the same side effects and whilst they have reduced a little they are still a problem(swollen and painful joints, vision problems early morningand always dry mouth) itreid to reduce the Pregabalin from 200 to 150 but that was too much to quickly and i have gone back to 200mg
I take iron bisglycinate 50mg in evening as my ferritin was only 42.
As Joolsg indicated to allow the receptors to recover seems to take months not weeks with most people and until then i do not think i will make any changes except perhaps to try get my GP to change me to Buprenorphine.
My daily situation is similar to that described i think by Jools and others namely i get RLS late evening and then again when i go to bed.
Hello Davchar 23. If the picture of the harbour on your introductory page is where you live then I’m very envious as would love to live in such a place by the sea but I digress.
Like so many of us you have suffered the trauma of Augmentation a truly hellish condition and I wish you well with your fight for a more normal life but it’s sometimes hard to remember what that was. Yes trying to get your doctor to research RLS treatments is not easy and especially encouraging them to prescribe Opiates is virtually impossible without a letter from a Specialist taking the responsibility away from the GP but then I guess it would finally be his decision . For those of us in our late 70s and above would addiction be so bad to have a RLS free life for what’s left of it, anyway I understand that at the dose that would be prescribed that addiction is very unlikely
Hello Simkin, that’s interesting what were the symptoms you could not tolerate, were they similar to mine and how long did you have those symptoms before you changed.
Mine was different to yours as I reacted immediately, or as the doctor said "you have been on a drugs trip"! So I had to come off pregablin straightaway.It obviously did not agree with me.
Hello Simkin, that all sounds dreadful so good job you changed over. Isn’t it strange how Progabalin affects people in different ways, no two people are the same but like yourself a severe reaction occurred. I think it’s too early for me to change over to Gabapentin as only been on Pregabalin since 17 Oct which is also when I finally withdrew from Ropinirole so will build the Progabalin up to 300mg and discuss with my GP.
Hello HipHop. Very interested to read your post. I too have recently (March this year) started on Pregabalin after a couple of years on Pramipexole. I’m now taking 350mg nightly as that seems to be the minimum I can enjoy daytime relief from RLS ( a majority of the time ). I still get PLMD at night and frequently this can be bad enough to keep me awake or have to get up for a couple of hours. Side effects, I get slightly blurred vision sometimes, feel a little dizzy first thing in the morning, have weak thigh muscles and weak knees which has led to a lot of discomfort, sleeplessness, and difficulty working, walking and moving on my legs. I also get brain fog and get insomnia 3-4 nights per week. These side effects may or may not be connected with Pregab but that’s what I have. I’ve recently stopped taking paracetamol and Codeine but haven’t noticed any change either way in the ‘side effects’ or on RLS/PLMD. Hope that helps. P
Good morning Theonlypetied. Thank you for your reply. It appears that our symptoms are very similar with Pregabalin side effect's but although troubling Progabalin has helped me at least during the day and early evening when I’m not troubled by RLS at all but nighttime is still not good and sleep is constantly disrupted.and I have been up pottering around the house since 3am and probably won’t get any more sleep until about 4am when the general fatigue sets in.
I can cope with moderate sleep deprivation as I had late nights and very early mornings when I was working and when you’ve done that for a very long time one’s body becomes attuned to it. It’s the side effects that are troubling and an having difficulty writing this post as have blurred vision which is a shame as I had surgery on both eyes at the beginning of the year so my sight was excellent. anyway I will be increasing my dosage of Pregabalin tonight to 275mg and will be making a follow up appointment to see my GP, so let’s see what comes of that.
With blurred vision, I would not increase it. You can wait and see if it settles but if not, then you will need to get off it and the more you are taking the longer it will take to come off it. I know you want it to work but ...
Hello lovely lady and bless you for your care in looking after my well being. I have written to Doctor Jose Thomas tonight with a full resume from ending Ropinirole and starting Pregabalin so let’s see what he says, want his opinion before seeing my GP. The other issue is weight gain, couldn’t believe it only one pair of trousers in my closet fitted and they were hiking trousers but they put extreme stress on the buttons 😩 if they had popped they would kill at 50 feet 🤣. Joking apart, you end one lot of, excuse me, crap only to be faced with a different lot of crap. It’s just one big crappie roundabout we’re all on and we just want to be able to get off it.
Anyway it’s very very cold in UK and has been for several days with snow in Scotland so it could be worse I might have run out of logs ha ha.
All my best wishes Sue, going to bed now and see if I can stay there fore more than a few hours 🛌😴
Hi Sue. Thank you for your reply. I contacted Doctor Thomas at the Spire Cardiff and he replied within 12 hours, amazing. Anyway like you he suggested I reduce the Progabalin but he was a bit confused re. the swollen legs and ankles and blurred vision but said if my GP couldn’t find another cause then maybe Progabalin would be worth further investigation. Anyway he has come up with all the alternatives available and suggested we have a Zoom consultation which I will arrange after I see my GP tomorrow Tuesday 12 Dec. at 9.15 am. I have printed my email to doctor Thomas and his reply plus Mayo Clinic paper on the appropriate use of Opioids in the treatment of Refractory RLS. and will take with me tomorrow. Rather than feeling better having now been off Ropinirole since 17 October I’m feeling absolutely dreadful being between the devil and the deep blue sea, having a medication that’s not working at the low 225mg dose which is causing nasty side effects and restless legs being a bad boy causing sleepless nights again to the extent where I can go to bed at 10.30pm be up again at 11.30. - 12.30 am and then not able to go back to bed or sleep until morning when I start or try to start a normal day.
I can usually think through rationally and stay chirping but afraid Sylvester has managed to quiet this Tweetie Pie. It’s very hard as fellow sufferers will know to attempt to think rationally without going round in circles like a hamster in its wheel where one gets so disoriented you don’t know whether to stick twist or bust. Anyway let’s see what tomorrow brings. 🤔
Oh bless you Sue, thanks for reply, so far as light at end of tunnel goes, I think it’s the head light of a truck coming the other way.. I’ve always sympathised with other members on the forum who say that they are in despair and a dark place, well I can now sympathise knowing what that really is and it’s bloody scary. Sorry Sue 🤗🤗. I’ll just have to dig deeper
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Horizant 
End of the road
Severe RLS and scared. 
The Next Step
Had enough
