Would love some advice/reassurance. I have had RLS for many years and took pramipexole for 14 years with mostly good control until a few months ago, when augmentation set in.
I have weaned the pramipexole and started gabapentin. I am currently taking 2200mg. I have followed all of the advice and have been taking it in divided doses throughout the day. I take no other meds except for an iron supplement.
My iron and ferretin have been checked regularly and I can’t recall the result but they were above the levels recommend but the Aus medical guidelines for rls.
I have been off pramipexole for 4 weeks now and have had a handful of good nights sleep in that time. I am getting so defeated and down about the bad nights and don’t know what to do.
Do I need to keep increasing the gabapentin ? How do I know when to increase it ? Do I need to just give it more time ?
am just at a loss about what to do, tonight is a particularly bad night and I have been up three times already and am just desperate for some sleep.
Would love some guidance
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ehr1968
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I should say that I've not had RLS bad enough to drive me to medication, so the following comes from reading of others experience rather than my own.
Firstly, "it can take several weeks for gabapentin to reach its full effect" (Drugs.com) - so as you've only (I know that it'll feel like a lifetime) been off pramipexole for 4 weeks, limiting gabapentin effectiveness, you may find that it still hasn't reached that 'full effect'. I'm assuming as you've been around the forum for a while that you're splitting the doses into no more than 600mg at a time 2 hours apart.
Secondly, a September 2023 paper in the Australian Journal of General Practice linked by the RACGP suggests gabapentin doses in the range "600–2400 mg". On the other hand, the Mayo Algorithm states "Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used". So you could go higher, but personally - if you can - I'd wait a week or two more to see whether your existing dose works better. Others may suggest that you increase further (or wait longer).
Some find that pregabalin works better than gabapentin, and while the AJGP paper has pregabalin as second choice Alpha-2-delta ligand behind gabapentin this remains a possibility to discuss with your doctor if the gabapentin still doesn't feel effective. An advantage of pregabalin is also that you don't have to split doses.
Thirdly, pregabalin is still not the last option: the same AJGP/RACGP paper says "Opioids might be useful for refractory RLS, defined as persisting symptoms despite therapy. This might occur due to the natural history of the condition, with a reduction in the efficacy of the first-line agents, augmentation or drug-associated side effects."
Finally, it could still be useful to know what your last ferritin and transferrin saturation numbers actually were. The AJGP/RACGP guidance states that "Consensus opinion suggests targeting ferritin levels >75 µg/L and/or aiming for transferrin saturations >20%." If you were only just over that 75 µg/L you could benefit by increasing ferritin to over 100, even better 200.
While your TSAT is just below the 20% quoted above, other sources quote 20% as the bottom of the normal male range and 15% as the equivalent female figure. So on that basis, all good.
Can I just clarify - how you split Gabapentin? I've recently started taking one dose about an hour before bed and another (smaller one ) after about 5 hours - just to try to keep RLS at bay until I get up. Is this the "correct" way to do it?
As yet I don't seem to have got the dose right so will increase by another 100 or 200 mg.
According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."
As I don't use medications for RLS, I'm going to copy in what SueJohnson posts about gabapentin:
The beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off ropinirole (C: or other dopamine agonists pramipexole or rotigotine) although it won't be fully effective until you are off it (C: the dopamine agonist) for several weeks.
After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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.
Most of the side effects of gabapentin 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.
If you take magnesium including in a multivitamin take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption.
Having been on Pramipexol for so long, it will take a while to get your body back into shape again.
I won't bore you with talk of upregulating downreceptorsand disemboweling your gut microbiome and so on.
Just be sure that you aren't taking any triggering agents-- such as medications-- antihistamines, antidepressants, antiwassernames and so on. Statins and tummymeds are also in the bad boy club.
Also don't be taking any form of magnesium within a few hours of the Gabapentin. That can be a bit of a challenge if you are splitting the Gabapentin doses-- as you should be.
Sue or Chris or some other magician will prompt you on that aspect!!!😝
I see you are compliant with most of the usual needs-- just also check food and drink. Sugar ,msg alcohol etc etc etc.
Keep a diary!!
It does take a long time-- weeks and months for your system to get back in shape.
Seeing Madlegs reply, this is the RLS-UK list of medications to avoid:
"A number of medications can make RLS worse. In particular, anti-nausea drugs and sedating antihistamines can block the brain’s dopamine receptors, increasing the symptoms of restless legs. Antidepressants that increase serotonin and antipsychotic medications can also aggravate the condition. Let your doctor know if your restless legs symptoms worsen after you take a new medication. A change in dosage or a change to a different medication may help. Below we have listed a number of medications which our forum users suggested made their RLS worse. Please note that this list is not exhaustive and while we have been advised that they have made RLS symptoms worse for some people, this may not be the case for you.
In particular, anti nausea drugs and sedating anti histamines can block the brains' dopamine receptors, increasing the symptoms of restless legs. Anything containing pseudoephrine or phenylephrine should be avoided.
Cold and Flu remedies and Anti-Histamines:
Common culprits include: Night Nurse, Day Nurse, Nytol, Actifed, Avamys, Benadryl (Acrivastine), Chlorphenamine ( Piriton), Contac, Coricidin, Fluticasone, Rhinolast (Azelastine hydrochloride), Sinutab, Sudafed.
Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms. Always try to choose non-drowsy options.
Anti-depressants:
Many people living with RLS also live with depression and consequently are prescribed anti-depression medication. RLS is also common in two conditions that often co-occur with depression: ADHD and PTSD. However some anti-depressants can actually make RLS symptoms worse. If you are prescribed anti-depressants and live with RLS, we recommend you monitor your RLS symptoms to see if your symptoms worsen after starting anti-depressant medication. If so, speak to your medical practitioner to see if you can be prescribed an alternative medication. Trazodone and Bupropion are both RLS safe alternatives.
Anti-psychotics: Most anti psychotics worsen RLS.
Selective Serotonin-Reuptake Inhibitors (SSRIs) and Serotonin and Norepineephrine Reuptake Inhibitors (SNRIs):
Amitriptyline (Tryptizol), Clomipramine (Anafranil, Imipramine (Tofranil), Lofepramine (Gamanil), Nortryptiline (Allegron), Amoxapine, Desipramine (Norpramin), Doxepin, Trimipramine, Imipramine, Mirtazapine ( Zispin), Protriptyline, as well as others, have been suggested as making the symptoms of RLS worse.
Discuss any anti nauseates with your doctors before surgery as many, including prochlorperazine or metoclopramide, will trigger RLS during and after surgery. Safe alternatives include odansetron (Zofran), domperidone or granisetron hydrochloride."
And my dietary triggers are: diet drinks, particularly those containing aspartame - which I avoid altogether now; too much sugar, caffeine, alcohol particularly in the evening. But we all potentially have different dietary triggers - or none!
Hang in there. It can take months for withdrawals to settle and the gabapentin takes at least 4 weeks to work after Pramipexole withdrawals.However, if it doesn't start to help in another 4 to 6 weeks, you may be a non responder. There has been a research study on this and it's been noted by the top US experts who treat thousands of RLS patients, compared to the handful that UK and Australian doctors see each year.
You may then have to try a low dose opioid.
So, follow Chris & Madlegs advice and, if you're still struggling in a month, post again.
Everyone has given you great advice especially don't increase the gabapentin.
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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist nor that much gabapentin so soon at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thanks Sue, I am taking pantoprazole for reflux but always take it in the am usually around 7am, is that likely to cause a problem and I also wonder if HRT patches could be contributing, I put a new patch on yeterday and had a truly awful night
thanks everyone such great advice and some reassurance that I just need to give it some more time.
I take pantopazole in the morning for reflux and also apply a HRT patch every few days, I have been avoiding taking magnesium too close to the gabapentin.
Have tried to avoid any foods I think may make me worse, like sugar, I don’t drink any caffeinated drinks and have stopped having any chocolate and have being exercising gently every day.
I am really hoping I am not a non responder, given I have had some nights where I have slept the entire night without any restlessness I am hoping that means I am responding but it’s just taking some time.
Thanks again it was so nice getting up this morning to so many kind responses
I took omeprazole with no adverse effects on my RLS. But be aware that all PPIs .inhibit the absorption of minerals.So keep your iron levels up.And calcium. Which affects bone density. Huge good luck.
I have had RLS for about 25 years. I took Gabapentin as well. At first it helped along with Ropinirole. I stopped the Gabapentin and added 400 mg of Magnesium and B6 along with the Ropinirole every afternoon at 2:00 pm and have NEVER had the relief and success that I have now. I never thought simple supplements would make a difference but boy was I wrong. Rarely does it even bother me now. I've been doing that for about two months now.
Big mistake - you stopped the wrong one. Gabapentin doesn't work while you are on ropinirole. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Thought I would give an update on how I have been going, gabapentin continued to provide no relief, I swapped to Lyrica and while it helped a very small amount with sleep the hunger and feeling like a zombie all day were not nice. I ended up seeing a very experienced movement disorders neurologist (should also add I am a neurology nurse). He wanted to try and few things before discussing an opioid as a long term solution. He prescribed clonazepam 0.5mg and I have had two pretty good nights sleep. I have still been awake over night but have averaged 7 hours sleep a night which is so much better. I feel slightly sleepy during the day but that could be also due to months of poor sleep catching up with me. Hoping things continue to stay stable, it’s been such a tough time and my personal and professional life has really suffered.
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