Hi,I suffered from RLS for 12yrs, but never took any medications. Earlier this year after discovering I had ferritin of 18, a short course of iron supplements increasing my ferritin to 55 resolved all RLS symptoms.
A few weeks ago I unfortunately developed insomnia due to anxiety and GP commenced Mirtazapine, night 1 & 2 really bad RLS so GP started Pramipexole 0.088mg. It worked straight away to relieve RLS. However, I'm feeling terribly unwell every day with fatigue, drowsiness, light-headed, weak etc... I appreciate this could be a combination of both medications side effects.
The GP said I can just stop the Pramipexole and see if the RLS has resolved, but I've seen lots of people comment you need to taper. My sister who is a pharmacy tech looked up their guidance, and even she said the advice at such a low dose is to just stop.
I wondered if I could take half a tablet (0.044mg) and see what happens ?
Also hoping to get the Mirtazapine changed to something different and hopefully that the RLS will resolve ? Any advice greatfully received.
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Purdy_123
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Hi Purdy. Pramipexole was, for me, a miracle drug at first. A few months after I reached the max dose , the ‘hell’ of Pramipexole began. Having suffered from the bad effects of Pramipexole augmentation and withdrawal, I’d say get off the drug asap either by complete or gradual means.
I don’t know enough about the interactions of your other meds, but Pregabalin or Gabapentin are a recommended first line approach to RLS.
If you've been on it for a short while, you should be ok to just stop.
I highly recommend NOT stopping the DA until you’re off the mirtazapine and onto an RLS friendly drug like Trazodone. One 50mg (or even cut in half) tablet will relieve anxiety and put you to sleep and is not considered addictive. Once off the SSRI, then dropping the DA should be fairly simple since you were on such a low dose for a short period of time.
Your story is one told over and over again on here. Only yours has a much better ending. Every week someone comes on here who was prescribed an SSRI, they developed RLS only the connection was never made. They’re eventually prescribed a DA and remain on both drugs, sometimes for decades. The DAs make their lousy dopamine receptors even lousier and withdrawal can be very painful.
You see, the SSRIs only make the symptoms of RLS worse. They do NOT down-regulate our pathetic dopamine receptors. That is strictly the territory of the DAs. As a matter of fact, SSRIs might actually “up-regulate” our receptors because they’re a dopamine ANTAGONIST, just the opposite of a dopamine agonist. So while a dopamine agonist relieves symptoms in the short run, it will make our receptors worse in the long run. On the other hand, the SSRIs make symptoms worse in the short run, but they MAY make our receptors better in the long run? It’s just so painful in the process that I can’t recommend undertaking such a thing even though ultimately a substance that up-regulates our receptors might be the best treatment of all for RLS. Anyways, up-regulated (or down-regulated) receptors will start the slow crawl back to baseline once the substance is stopped.
What about trying a half a 0.088mg tablet to see if that suffices? I'm not sure they are going to stop/change the mirtazapine, the GP is unwilling to change anything presently as I have my initial telephone appointment with the Mental health team tomorrow. My GP suggested they may considering something like Clonazapam as that treats anxiety and RLS. When I googled Trazodone that suggested RLS as a side effect ?
Interestingly I use to take an SSRI for 16yrs and I only had RLS symptoms on and off for the last 4yrs of that, at the time no connection was made. But then I continued to have RLS for the 6yrs after I stopped the SSRI until I took the iron supplements, so it may have been that all along.
Fascinating!!! When we’re young (and our lousy receptors haven’t been made more lousy with age) we can actually take these known RLS provoking drugs without suffering the consequence. Eventually, as you know, we can’t take these substances. However, in your case, I think it was not only a matter of age catching up with you, but low iron.
My answer to your question is no. Do not cut back on the DA until the mirtazapine is stopped. Trazodone is well known to be RLS friendly, despite what the internet says. It’s worth a shot. The Mirtazapine is unacceptable. Tell the doctor “you can’t abandon me to my pain, I need to come off both these drugs.” In other words, keep the status quo until your doctor relents.
In the meantime, I recommend taking 50mg of ferrous bisglycinate (which is two 25mg capsules) or two of whatever form of iron you have in the house. It must be taken on an empty stomach about an hour before bed. I do this and it relieves my RLS in one hour for one night. It should help you as well.
Thanks. I will make it clear to the MH team tomorrow the issues I'm having, I feel so much worse on both these medicines. For the 1st time my legs are starting to feel agitated in the evening now. I had to stop the iron supplements as I have gastritis and the iron irritated it terribly, although I am taking 1 x simply heme iron in the morning so may take 1 before bed as well.
Yessss, please take double the dose in the evening. Heme iron is great. Possibly better than the bisglycinate which is also called Gentle Iron and theoretically should not cause worsened symptoms of gastritis. The best thing for gastritis is zinc carnosine. Even PPIs didn’t stop my gastritis. Only the zinc. Just last week I had an endoscopy and the doc said my esophagus and stomach looked “perfect.” Zinc carnosine is by prescription in Japan for ulcers. They know how incredibly well it works. Not sure why they don’t know about this in other countries.
As you've only been on Pramipexole for a few weeks, yes you can just stop.I can't believe doctors are STILL prescribing Pramipexole or Anti depressants for RLS.
Pramipexole WILL cause worsening of RLS. Mirtazapine WILL trigger or worsen RLS.
Hopefully, as you've only been on Mirtazapine for a few weeks, you can stop that as well, BUT first switch to trazodone which will ease anxiety and help you sleep.
Read the Mayo Clinic Algorithm and RLS UK website. Learn all you can about RLS because, as you have discovered, doctors know zero and prescribe the wrong meds.
Raising serum ferritin above 100, preferably 200 resolves the majority of RLS and should be the first step in treatment.
Welcome to the forum. You will find lots of help, support and understanding here.
As Madlegs1 and Joolsg said since you have only been on pramipexole a few weeks you can probably just stop it.
You should taper off the Mirtazapine perhaps taking half what you are taking now and then a week later stopping it. I don't know where you got the idea that trazodone made RLS worse as it is one of only two antidepressants that are safe for RLS. The other one is Wellbutrin. Trazodone also helps with anxiety and insomnia
I wouldn't take clonazepam as it has a long half life of 40 hours so it ill make you sleepy the next day. If you don't lice in the UK I would recommend lunesta. If you do I would suggest zopiclone.
On the iron keep taking it. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. Heme iron is not as effective as non-heme iron. Since you have gastritis you could try an iron patch. Patch MD sells one. Be sure if it contains iron bisgycinate it contains 25 mg or more of elemental iron or otherwise that it contains 35 mg of elemental iron. Even better would be if you could get an iron infusion. On the iron you are taking now, take it only in the evening since once you take it hepsidin is release which prevents any more iron from being absorbed for up to 24 hours.
Pramipexole and ropinirole used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.
P.S. I just re-read your original post and saw that the iron resolved all your symptoms so you won't need gabapentin/pregabalin unless your symptoms get worse.
Thank you for your detailed response. I live in the UK. My GP tried zopiclone before the mirtazapine and it only aided me too sleep for an hour or 2, some nights I cant sleep with the mirtazapine so take the zopiclone as well. I'm hopeful IF I can stop the mirtazapine the RLS will resolve if I continue with heme iron. I will ask about the Trazodone when I speak to the MH team tomorrow. The only other medication I currently take is Lansoprazole (PPI) 30mg & 15mg in the evening although weaning the evening dose down to stop, and propranolol which was 20mg three times a day but now down to 20mg in the evening only. I was taking both these prior to the Mirtazapine and they didn't cause any RLS symptoms.
Geeze you had RLS licked with the increased Ferritin level! Anti depressants and Prami are nasty drugs for RLS. For your anxiety see this post...not RLS related but good suggestions for drug-free supplement treatments.
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