I have suffered with Restless Legs for 13 years but since the beginning of October it has become much worse. Last night I got about 1 hour's sleep! I can't go on like this. I'm intending to go back to my GP next week, but I would be really grateful if anyone could help me please, to identify what is going wrong because they seem to be at a loss to understand. (If you can point me to official links with information, even better!)
My RLS always used to just be in the evening and night, fairly typical creeping pains in my legs that were relieved when I moved my legs. I took pramipexole, minimum dose 88mg.
I had identified that it was worse if I spent a lot of time on my feet or if my IBS was bad, so I limited taking pramipexole to those days. (About 50% pre-October) Sometimes taking it late!
In April I started getting pains / aching in my calves in the early morning when I woke up, this didn't feel like restless legs, but it did disappear when I got up or moved. In October this got a LOT worse, happening about 50% of the days. Reading the RLS UK website, could this be Rebound?
I saw my GP, they did blood tests. I have Hashimoto's (underactive thyroid) so I take thyroxine. They have reduced my thyroxine dose as my TSH was borderline low, although my T3 & T4 were normal. They thought I might be overstimulated and this might be making my RLS worse. They also told me to double my pramipexole dose.
My vitamin B12 was also borderline low 149 (this has been dropping for several years) and my white blood cell count is borderline low 4.02 . My serum ferritin was 31.
I am on estradiol (oestrogen since June*), laxido, levothyroxine, mirtazipine (dose increased in July), pramipexole (2x88mcg), propanolol (2x40 since Monday), sumatriptan (as needed for migraine), topiramate (2x50mg since 2021). Are any of these likely to be making my symptoms worse?
* I kept forgetting the estradiol at first so it took a long time for me to get that into a routine.
I'm probably going to have to give up on the propanolol as it's making my feet cold / numb, and I am pretty sure it's contributing to the insomnia, But I do need to find something better than the topiramate because it isn't working for me.
I've read about augmentation, but I fear that opiods aren't an option for me due to my migraines. I've already suffered rebound headaches several times in my life and they are nasty. So I'm guessing my only other option is something like gabapentin?
Sorry for the long post, hoping someone can help.
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Doggywalker
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Sounds like you are suffering from augmentation and need to get off the pramipexole.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 [.125] tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 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 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 even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg 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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Also you are taking some medicines that make RLS worse. HRT is one of them.
mirtazipine is another. A safe antidepressant is Wellbutrin or trazodone.
topiramate may or may not make RLS worse. Migraines can be a side effect of pramipexole. The propranolol should also help your migraines.
Your ferritin is very low for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. You can also get one privately by paying for it, but it costs around £800.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Are you taking any OTC supplements? Some can make RLS worse.
Thanks Sue for all of your information, that's very helpful, and plenty of food for thought there. I am taking a vitamin supplement. It's the Well Woman, vegan one. I'm not vegan but I am dairy free and gluten free, and I felt that it matched what I needed most closely. Do you think that could be causing a problem? The only other OTC medicines I take are cocodamol when my migraines or RLS get bad. I try to avoid taking other medicines.
Please follow what Sue and Jools are suggesting. I did it and I’m 88 it was hell but I’m so glad I persevered. I had no help, no narcotic and was caring full time for a baby- my great grandchild whose Mother was in uni. It was so hard but I know you can do it you can be is if I did, you can and also be so you have to. It’s the only way out of this mess after prami people. Grit your teeth. Just one night at a time
I think you meant this for Doggywalker. Unfortunately she won't be notified since it was a reply to me. You might want to repeat it as a reply to her and then delete this.
SueJohnson has given you excellent advice.Your GP won't know anything about RLS or they would have informed you about the very high rates of drug-induced worsening on Pramipexole and that many of your meds trigger/worsen the disease.
Ask your GP to look at RLS-UK, which now contains the latest research and information about RLS. NHS and NICE guidance is about 10 years out of date.
There is a 'useful resources' section with printable pages on iron therapy and Pramipexole withdrawal.
Dopamine agonists are the ONLY drugs that actually make a disease much worse than when you started taking them.
All anti depressants trigger/worsen RLS so discuss a safe switch to Trazodone or wellbutrin.
Read ALL you can. The more you learn, the better the treatment you will receive.
Also don't take pramipexole every other day because that precipitates withdrawal effects. Take it every day and then withdraw as I advised. If taking it every day doesn't settle your RLS increase it by 1/2 of a .88 tablet tablet and let your symptoms settle and then start the reduction.
Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods) , iron, magnesium (or magnesium rich foods). DAs like pramipexole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism (high TSH) can make RLS worse so want to bring it up. People with hypothyroidism may have prolonged and exaggerated responses to opioids.
I don't think I can pin it down to the estradiol. But I think I have this afternoon managed to pin it to the last increase in my dose in mirtazapine. Prior to that, I was only taking pramipexole about 50% of the days in the month. As soon as the mirtazapine started, I was taking pramipexole every day, and within 3 months I had to double the dose. I knew that dose change wasn't doing me much good, but I felt so low I didn't know what else to do. Now I feel even worse! I have recorded a lot of data I just had to work out where to look!
The trouble is, if I came off the estradiol, the painful condition that it is treating would almost certainly return. Then I don't know if there is an alternative?
It’s so unfortunate that we not only have to suffer with RLS but also have to suffer with other ailments due to not being able to take certain medications when we need them. Salt in the wound. I also was led down the rabbit hole of DA’s because of taking trigger meds. I had no idea at the time what havoc I was causing myself. I’m glad you have pin pointed the possible cause. Now to find a way back from this dilemma. I hope you sort all of this out soon.
Your iron status seems painfully low with Ferritin at 31. Brain iron deficiency is a leading cause of RLS. Supplements raised my Ferritin from 49 to 105 in 3 months and severe RLS abated almost immediately.
Thanks Dic, it's almost always low! In all the blood test results I've found (and I had my records printed off a couple of years ago so I've gone through them all), it's only ever once gone above 42.
It could be an absorption issue. You could try PatchMD iron patches to bypass the gastro system or add the probiotic LP299v. It has been shown to increase iron absorption. FYI - I don't know of anyone using the PatchMD iron - but it sounds reasonable to consider.
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