First timer. Been recently put on Ropinirole,not realising what a unpleasant drug it is. Yes it stops the RLS but I felt completely weird in the morning and would out of the blue feel so tired in the day. So I dropped from two tablets to one at night which is much better,but I will still get twitching of the legs at night. When I spoke to a different Doctor, said for me to have a blood test to see if I was anemic, I am low on Folic Acid B12,so on tablets for that, can that cause RLS, plus can the Menopause cause it, I am going to go on HRT.
Is there something better than Ropinirole out there, I the doctor and she said they are all similar.
Great, I don't want to turn into a Madwoman!!!!!
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Absolutely there is a better medicine and I am glad the ropinirole didn't agree with you because that is no longer the first line treatment for RLS since up to 70% of people on it will suffer augmentation which believe me you don't want. Your doctor is not uptodate on the treatment of RLS as many doctors aren't. No - menopause and folic acid do not cause RLS. If you go on HRT, however many people, but not all, find that exacerbates their symptoms. You will just have to try it and see how it affects you. Are you taking any other medicines or OTC supplements? If you list them I can tell you whether any of them make RLS worse and perhaps provide a safe substitute. The medicine you want is gabapentin. Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of 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 your doctor obviously does not know much about RLS and is not uptodate on it at
Https://mayoclinicproceedings.org/a... Also ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 2 tablets of 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Thank you so much for your help!!!! I have not started HRT yet, I was suggested it because I suffer with joint/muscle pain and it might help, though I have for a few years now and I'm under the rheumatoid specialist at Bath Royal United Hospital and discovered I have Lesions in the spine, thankfully nothing nasty. They aren't sure if I have arthritis or rheumatoid arthritis as I don't generally swell up
😜, In fact they have said I'm a mystery!!!This is my medication I'm on at the moment -
Ropinirole
Folic Acid 5mg
Cerazette, Mini pill
Oh they have also discovered I have a lot of Fibroids, one the size of a large apple, but they don't seem to be causing a issue. Last lot I had did and I had them removed. What joys!!!!
I am so angry that your GP prescribed Ropinirole. It WILL cause augmentation. Did he warn you about Impulse Control Disorder and Augmentation? If not, he's negligent. RLS is not taught at medical school and the UK and NICE guidelines are years behind best practice. The Mayo Clinic Algorithm is now best practice. Send a copy to your GP along with the GP training guide below.Sue has given you excellent advice.
As she advises, it's best to stop Ropinirole now. Reduce by half a tablet every 2 weeks and the RLS will play up ( withdrawals) but take solpadeine max or ask GP for codeine for 2 to 3 weeks and then it will settle to what it was before Ropinirole.
Raising serum ferritin levela above 100, preferably 200 and raising B12, can resolve RLS in the majority of cases without the need for medication. That's why your GP should have waited until bloods were done.
Iron infusions will raise levels faster. Several UK hospitals will now do Injectafer infusions for RLS so, after blood tests, ask for a referral to the haematology department at your local hospital.
If the iron infusion does not help, then your GP can prescribe pregabalin or gabapentin.
Many report HRT helps RLS, others that it makes RLS worse so you won't know until you try it.
Read everything you can about RLS on rls.uk and rls.org. The more you know, the better the treatment you'll receive.
No he mentioned nothing. It was a different Doctor who said it might be a good idea to have a blood test, but other than the folic acid being low, as far as she was concerned everything was ok. I will gradually come off Ropinirole and try and see the doctor again, with this new info I have. Big thank you, I really appreciate it.
Watch out for unusual behaviour. Compulsive spending, gambling, overeating & hypersexuality are quite high. People have lost their homes and marriages. That's why your GP should warn you in advance.Your GPs will tell you your bloods are fine but ask for actual numbers. Serum ferritin of 15 is 'normal' but for RLS patients it has to be far higher. As I mentioned above - we need above 200 and some only find relief at 300. It's criminal that such a common, serious disease isn't mentioned at medical school or during GP training. Neurologists aren't taught anything either & only learn about it if they have a special interest in RLS.
Thank you. I'm only on the one tablet now and will try and half it. I really wish I had looked into them before taking them, but we were going away in our touring caravan and didn't want to be pacing up and the van or scaring people at night by walking around the campsite😆. I will try and make an appointment to SEE the doctor, not phone call and say what I have found out. Thank you again!!!
Back up! Even if your RLS comes back - get off the Ropinirole. It is one nasty drug. As suggested above, read the latest Mayo Clinic protocol for RLS treatment. Get a full iron panel to test your iron status which can lead to iron supplementation and RLS relief.
Thanks everyone! I'm coming off Ropinirole, even the Doctor who suggested I had a blood test, said it wasn't a nice drug!!! But there wasn't really anything else to take. But like have all said they don't seem to know that much about RLS!!!
Doctors waved Ropinirole at me with the comment "It's the only solution for RLS". I thankfully found this forum and said no thanks. Iron supplements totally eliminated my RLS.
Nasty, nasty drug! Search this site for Tramadol and RLS. I suffered my whole childhood and adult life with RLS. Tried everything including homeopathic. Tramadol is the only thing that takes it away completely. I’ve been taking 4 x 50 mg per day for years. No side effects; never increased dosage. As a matter of fact; I lowered it. Godsend….
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