Both my daughter (39) and I (68) have RLS as did both of my parents. 3 weeks ago she was prescribed Premepexole and I was given it 2 weeks ago (completely different surgeries). Both of us had instantaneous relief from RLS that same night we took our first tablet.
Today we had our 6 weekly pedicure from a lovely lady who visits us at my daughter's house. Turns out neither of us have ticklish feet anymore lol I used to have to hold my leg down and the lady had to almost grip the foot she was working on because I was howling and almost jumping out of the seat. Today I waited and nothing happened. Same thing happened to my daughter.
Has this happened to anyone else?
Written by
Hannah68
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It must be a beautiful experience just not to have to worry about the ticklies any more.
You will get plenty of advice about Augmentation, and it is important to take care, as to how you progress from here.
Some people just take the Pramipexol for a while and then change to another medication for a while.
You could get 10 years relief ,or it could give out after months. Just enjoy it while it works for you
Only take the lowest dose that works for you. It is better to have a little discomfort rather than be completely free and have to go through withdrawals from a high dose.
Please don't think I'm being overly negative, but so many people have suffered miserably by not taking this advice seriously.
Thank you. I had developed many 'coping' mechanisms over the decades as I got nothing from my GPs over those years. Neither of us anticipated how well it would work from day 1 and we're making the most of it. The non-ticklish feet took us both completely by surprise. My grandson usually laughs himself silly watching me go through the pedicure in hysterics but I feel absolutely nothing now. It feels very weird.
I'm glad you have instant relief BUT I really hope your GP first took full panel fasting blood tests to find out if your serum ferritin is below 100. The majority of RLS patients will see a dramatic improvement in RLS by raising brain iron by oral pills or an IV infusion.Did he discuss Impulse Control Disorder and drug induced worsening ( augmentation)? They are both extremely common on Pramipexole & Ropinirole and experts no longer prescribe these drugs because of the high rate of RLS getting much worse on the drug. Sadly, UK doctors know nothing about RLS, or the dangers of Pramipexole.
Before you both continue on the drug, do read up on augmentation and the signs to look out for. Keep the dose as low as possible and NEVER increase. If it stops working, switch meds.
Here is the latest teaching module from KISS, the largest GP training company in the UK. They warn against Pramipexole.
Iron treatment, eliminating trigger meds ( anti histamines/anti depressants) are the FIRST treatment steps. Then pregabalin or gabapentin.
Spend time reading all the posts on Pramipexole on this site and you will see how many people suffer severe worsening.
See the article by Dr Winkelman, a top RLS expert. He warns against Pramipexole and Ropinirole. Many of us joined this site because our RLS became so severe on Pramipexole/Ropinirole that it was affecting us 24/7 & had moved to our arms etc. It is far more common than doctors think.
Be prepared.
In the meantime, I'm delighted you're finally getting sleep.
in a few months, try and do a night or 2 without a tablet. if you wake up with a restless feeling in your chest, arms and legs, read up on DAWS. if not, dont worry to much about the medication, you can quit it anyday then.
To add to what Joolsg said. Up to 70% of people on pramipexole or ropinirole (dopamine agonists) will suffer from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you and your daughter see your respective doctors ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you and she 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. Many medicines and OTC supplements can make RLS worse. If you or she 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.
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