I now have severe RLS. Before my Whipple's op for cancer it was managed on one daily Iron Tablets.
Since the op last year it has got very bad in my legs and arms and can be during the day as well as night. Pramipexole x3 helped for 3 months but now its stopped working. Last night I stopped the pramipexole and took 75 mgs of Pregabalin instead. Usually the jerks last 3-4 hours but last night from 11pm and is still a problem if I sit or lie down now at 11 am( to date this episode has lasted over 12 hours I have not slept since 5am yesterday and am exhausted. My problem is what to do tonight do I try to reduce the Pramipexole or take another Pregabalin the GP left it to me when I rang this morning. Also could Creon be exacerbating it.
Thanks
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Mycatis6
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It appears you suddenly stopped the pramipexole completely is that right?
By 3 tablets do you mean 0.125mg tablets or 0.25mg tablets? Hopefully the first.
You must never stop pramipexole suddenly!
Unless you were switching from pramipexole to anotherdopamine agonist, and only then.
Pregabalin is not a dopamine agonist.
Withdrawal effects from pramipexole can start within 24 hours and that is what you've now discovered.
I'm afraid to say if your doctor told you that you could just stop the pramipexole and start the pregabalin, this is irresponsible and very concerning.
In addition it takes 3 weeks or more for pregabalin to start working and it won't counteract withdrawal effects.
I suggest you take your normal dose of pramipexole tonight - as well as the pregabalin. Perhaps a couple of nights even.
I'd suggest you then reduce the dose by half a 0.125 tablet no less than once every two weeks.
Every time you reduce the dose your symptoms may get worse for those two weeks, then settle. The bigger the reduction you make the more severe withdrawals will be.
I'm sorry if you're doctor is apparently ignorant about this. What I write is based on the literature and personal experience.
It should say on the patient leaflet do not stop suddenly.
That is so helpful as I was not going to take anything tonight to see if the symptoms got better.I have been taking 180mcg x3 most nights since November 2020. I think that is 0.54mgs? but because I am breathless on them I sometimes take180mcg x2 instead. I wrote down what the GP said which was start the pregabalin and stop the pramipexole. I rang this morning and he said it was not withdrawal after I said I was worried it was and he said to take which ever drug I was comfortable with!After reading this I have taken premipexole 180 mcgs x2 now 18.30 hrs because its 46 hours since I took any. I took the pregabalin for the first time last night and do not want to try it again tonight even with pramipexole. I have continuous jerking since 10pm last night an cannot even sit down and have not been able to sleep at all. Before My Whipple's op for cancer last year I was fairly well controlled on 1 Iron tablet a day but since the op it has steadily got worse up to 4 hours of leg and arm jerking and this can be a 2-3 of time in 24 hours. I am on 3 Iron tablets a day which do not seem to help at all. Can I start reducing from the 2 I sometimes take or should I start at 3 tablets and reduce?
Here is a link to an article about neuroleptic malignant syndrome which can be casued by some drugs OR the rapid withdrawal of dopaminergic medications.
Note under the heading "If you stop taking Pramipexole"
It states
"If you have to stop taking this medicine, your doctor will reduce the dose gradually. This reduces the risk of worsening symptoms."
What your doctor is advising appears to be dangerous.
I suggest you switch to another doctor at least.
You might also consider sending these links or printouts to this doctor.
You might wish to discuss with him/her their reasons for behaving in such a manner.
Otherwise
I would at least submit a complaint about this doctor to his/her surgery
You might also consider sending an expression of concern about him/her to the General Medical Council for their apparent dangerous conduct.
3 X 180mcg pramipexole is the maximum dose of pramipexole and as you may have guessed, I don't believe I actually stated it, you are suffering augmentation.
The recommended trreatments for this include
Blood tests for iron deficiency, including serum ferritin.
Identification and if possible avoidance of exacerbating factors e.g. other medications.
Weaning off the dopamine agonist and replacing it with an alpha 2 delta ligand e.g. pregabalin.
Please see this link which is the UK National Institute for Health and Care Excellence's CKS for restless legs which is official evidence based guidance for UK GPs on the management of RLS. This link is to the page on augmentation. (NICE 2020)
I suggest again, you take 3 X 180mcg tonight to get your levels back up.
Then start reducing at the rate of 44mcg every two weeks. To do this you will need some 88mg tablets which you can cut in half. You may find cutting by a whole 180mcg tablet or even half of one too much.
I'm sorry you've found yourself in this situation. I can honestly understand a GPs ignorance about the treatment of RLS, they receive little or not training in it. I also understand that they can be very busy, stressed and are only human, but this particular doctors conduct does sound out of order and you do deserve better treatment.
Thanks for this I emailed my GP he has no problem with a conservative approach to coming off pramipexole! So I took 3 x 180mcg tablets (540mcgs) and for the next 2 weeks I have reduced this to 2 and 3/4 tablets so about 495mcgs. and every 2 weeks will reduce by about 44-45mcgs what do you think? But I will also ask for a lower dose tablet to be more accurate but did you mean 88 mg or mcg?
Hello again can I ask you what you think again? In the 23 days since I spoke to you I have reduced Pramipexole from 540mcgs to 423mcgs the symptom are now very bad between the hours of 1pm to about 10pm after that its ok till the next day. At the same time I started Pregabalin 75mgs. Found this on several drug web sites 'Pramipexole should be tapered off at a rate of 0.54 mg of base (0.75 mg of salt) per day until the daily dose has been reduced to 0.54 mg of base (0.75 mg of salt'). But I was on 0.54mgs (max) per day.Then I found this on EMC 'Since the daily dose for the treatment of Restless Legs Syndrome will not exceed 0.54 mg of base (0.75 mg of salt) pramipexole can be discontinued without tapering off. In a 26 week placebo controlled trial, rebound of RLS symptoms (worsening of symptom severity as compared to baseline) was observed in 10% of patients (14 out of 135) after abrupt discontinuation of treatment. This effect was found to be similar across all doses'.
I am so confused about this and going mad with jerking legs etc the moment I stop moving during the afternoon and evening although my breathing is improving. My GP is leaving it up to me to do my own tapering as he thinks I can stop it at once.
Withdrawal from Pramipexole will start immediately if you just stop taking it. It's very dangerous to just stop dopamine agonists and you need to take a minimum of 3 months to reduce.I'm sorry your doctor doesn't know about this.
Thank-you I have read the leaflet but my GP said it would be ok to stop as I would not get withdrawal. I think I will follow Manervas withdrawal schedule and not try the pregabalin as my husband is ill and about to undergo heart surgery and I don't want to be unwell.
Your doctor is completely wrong and sadly doesn't know even the basics of RLS. Withdrawal from Pramipexole can be extremely dangerous.I hope you follow Manerva's schedule but you may need strong opioids to deal with the withdrawal jerks and spasms.
After reading your replies and the nice guide lines on Augmentation last night I was so worried I rang 111, I firstly was put on to a pharmacist who said take both medications but she did say she could not understand his rationale for Pregabalin! and she would get one of their GPs to ring, he has just rung this morning. He said to carry on with the pramipexole as he did not know if I could take both together then when I specifically asked if one can stop Pramipexole at once he said yes there was no reason I could not. At this point I realised this advice was not helpful and confusing but I will take both over the weekend and speak to my GP again on Monday. I took 3 pramipexole last night and I was able to sleep but legs woke me at 0600. I am now quite scared as I think I may well be in trouble?
Dear Mycatis, why on earth would you be in trouble? Because three different health professionals are not up to date with relevant knowledge? Some of that knowledge even basic stuff that is written in the information leaflets?
I think you have to done wise to continue both the pramipexole and to take the pregabalin. According to multiple RLS medical specialists, dopamine agonists (like pramipexole), alpha2delta ligands (like pregabalin) and even opioids (like oxycontin) can be take together. They all work through different routes and their mode of interaction as known so far do not seem to interact negatively. Also, 75mg of pregabalin is still a low / starting dose.
It is not unwise, and even recommended by several RLS specialists, to first build up to a possibly effective dose of the alternative medicine (in your case pregabalin) before starting to reduced the pramipexole. Reducing very slowly as both Manerva and Joolsg have advised wisely and from their own experience.
Finally, don't forget to get your bloods taken for a full iron panel, including ferritin and % saturation, and ask for the actual results. 'Normal' is different for people with RLS. Values should be high for us.
I am glad you got some sleep; it makes things a little bearable. Male sure you make a small bulleted list of what you want to say to your gp (keep it short) and what you want from her/him: be explicit.
Don't go too fast on building up pregabalin too; going slow reduces chances and severity of side effects. A typical effective dose is about 150mg. I hope this is helpful. Hang in there!
Sadly the lack of knowledge amongst doctors and pharmacists in this country about dopamine agonists is worrying. However, that's why this help forum is so important and useful. The people on here have the time to read the medical textbooks on rls and all the research articles and we follow the top RLS experts in the US who deal with thousands of RLS patients so are way ahead of European doctors.Doctors in the UK are never taught about RLS or the problems associated with dopamine agonists.
Most members of this site joined when we were experiencing augmentation on DAs and our GPs were totally ignorant and unable to help.
I'll be posting on Sunday about a new campaign to ensure RLS is taught to UK doctors during medical school and during GP training.
Follow Manerva's advice and his detailed withdrawal schedule and you will be in more knowledgeable, safe hands than calling your GP or 111. I'm Sadly just stating fact.
If you want to read more about RLS and dopamine agonists, there's an excellent book by Drs Buchfuhrer, Allen, Lee and Hening called 'Clinical Management of RLS' second edition. Available on Amazon. I carry mine to every GP and neurology appointment. Also, Dr. Buchfuhrer has an excellent website where he deals with augmentation and withdrawal issues in detail.
My neurologist started me on 10 mg oxicodone every nite and stopped pramipexal! Game changer! I actually only need 5 mg , and I have to take it a few hours before bed or it amps me up, but absolutely no rls!! Been on it since last July !!!!
I have had severe Restless Legs for many years now where the spasms in my legs and arms are really bad. It builds up inside me before each spasm. The only thing that gives me some relief is Rotigitine Patches. Try them. I am convinced that sometimes after you have eaten, some foods make it worse.
If you have augmented on Pramipexole, you will augment quite quickly on another dopamine agonist. The rotigitine patch would just prolong the agony for her. It's best used as a first dopamine agonist as it has a lower incidence of Augmentation, but only if no other DA has been tried before.
Hi MyCat, sounds like you are doing better now, per your more recent post. Thank heaven! However, back before your surgery, what type of iron were you taking and what time of day? This may help other people, who like yourself (pre-surgery and pre-DA), have mild RLS. I think that post-surgery alot of people, who have otherwise mild RLS that is controlled by daily iron, find it worse in the weeks and sometimes months following an operation.
Had you not been put on DAs, but rather a night-time opiate, or if you took several capsules of a highly bioavailable iron before bed, then in all likelihood, your RLS would have returned to baseline after several weeks.. Instead, the DAs down-regulated your already genetically inadequate dopamine receptors. Your experience, as painful as it was, is invaluable to others. And your receptors have clawed their way back to baseline anyways it sounds like...once stopping the DAs.
I think your ferritin is currently at 400 because your body is storing away any iron you take in and not releasing much from its stores because it believes it is under attack from the cancer. It senses an intruder, and in an effort to kill-off the intruder it withholds iron from the intruder/cancer because all intruders love and need iron. In the process your ferritin goes way high.
I usually never make this kind of recommendation, but I would go down from three to one capsule of ferrous bisglycinate (not sure what kind of iron you're taking now), one hour before bed and on an empty stomach, away from all other supplements and drugs. If you feel better on 3x a day then you can always go back up. Theoretically, at 400ug ferritin, you should stop taking the iron all together. So if you're in the experimenting mood you can stop the iron supplement and see if you don't even need it anymore. Just about any doctor would tell you to stop.
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