My doctor is suggesting Amitiriptyline instead of pregabalin or gabapentin. I don’t know why. I’m in Manchester UK. Is anyone else on this? I’d like to know people’s experiences before I try it.
Also, my iron level has been at 30 for 6 months now despite taking prescription supplements do you think I’ll get IV iron on the nhs? Or will I have to pay - my doctor keeps telling me I’m not anaemic so I shouldn’t even need iron tablets. 🤬
thanks
Written by
LunaWise
To view profiles and participate in discussions please or .
Amitriptyline makes RLS worse for most. It is an anti-depressant. You need to see Dr Murphy. Your doctor obviously knows nothing.
You say iron level. Do you mean ferritin? If so you do need an iron infusion but if your doctor won't prescribe it you may may to pay privately for it. You can get one at the Iron Clinic in Manchester. It costs £800.
Hi. Yes my ferritin level has been 30 for 6 months now despite being on iron supplements and eating red meat. I’ll try and see a different doctor today and ask for an iron infusion but none of the doctors at my surgery know anything. It’s extremely difficult to keep asking, fighting, explaining etc etc
He is a consultant neurologist so you could keep your GP if you want to. I believe he is a private doctor but if he prescribes an infusion the visit will be cheaper than you paying for an iron infusion plus he will help by prescribing pregabalin or gabapentin. Just don't let him prescribe the Neupro (Rotigotine) patch.
I’ve had an extremely frustrating visit to my GP. They say my iron levels are fine (ferritin is 30 and has been for 6 months- before that it was 13). He said I would have seen an improvement in my RLS with the iron supplements if they were going to work and took me off the iron supplements. He won’t prescribe Pregabalin or Gabapentin and said the only thing I can take is Amitriptyline. He said it’s fine to come off ropinirole with weaning myself off it - there won’t be any side effects. I have made an appointment with dr Murphy but it’s not until mid October. What should I do until then?! They’ve stopped my ropinirole prescription. So I guess I have no choice but to take Amitriptyline. Ahhhh. So tired. 😪
I hate doctors that are so stupid!!! At least on the iron you don't need him to prescribe anything. See my reply to Myfurball below on the iron. It is OTC.
Don't take the Amitriptyline.
Try phoning him and begging him to let you continue the ropinirole for now. Tell him you will come off it after the date in October of your appointment but now is not a good time. You can either tell him you are seeing your neurologist then or if you don't think that would go over well make something up as a reason. It would be criminal to have you go through withdrawal cold turkey.
If that doesn't work try phoning Dr Murphy's office and tell them the situation and see if he will prescribe it.
If neither of these work, post back here and I will try to think up something else.
My RLS just slowly got worse and worse over the period of many years and the doctor put me on DA. I was on pramipexole for several years - the dose went up and up then I tried to come off it without knowing the problems of withdrawal. Did two weeks went to the doctor and they put me on ropinirole - I wish I hadn’t taken it. I’ve increased the dose on that and now my legs are bad again.
If your GP actually wants to improve his knowledge, tell him to read RLS-UK website.
It lists medications that worsen RLS under treatment options.
You were clearly suffering augmentation on Pramipexole, so ropinirole will make it much worse!
Get off it. See withdrawal schedule below.
Show them to your GP.
And if you live near St George's, Tooting, the Royal Cornwall in Truro or Salford, you can get an infusion on the NHS. The Iron therapy is set out under Useful Resources.
You have iron deficiency without anaemia. Very common in RLS.
I’m taking no other medication and I have no other health conditions. I am heathy - I exercise and eat well. My mum has RLS and has for many years. I went on HRT recently for 8 days and my RLS was unbearable!
Yes, HRT makes the symptoms of RLS terrible, but not your dopamine receptors. I have to go to sleep, but do me a favor - only take the magnesium by day and take the iron (preferrably ferrous bisglycinate but any will do for now) on an empty stomach about two hours before bed. When I do this my RLS is gone in 1.5 hours for one night. It might do same for you. RLS is more about serum iron, not really ferritin. Serum iron plummets at night and we get RLS. Try not to eat anything past 7pm and many people, including myself, find sleeping on the stomach is helpful when trying to get rid of that last little bit of RLS.
To increase flagging iron levels do try supplementing with the probiotic LP299v. "Lp299v, together with 20 mg of iron, could result in a more substantial and rapid improvement in iron status and improved vigor compared to 20 mg of iron alone." Lots of studies online.
It is in the probiotic drinks sold as Good Belly and also as a capsule sold by Jarrow...
LunaWise yes I’ve been on that for about a month I’m taking one 10mg tablet about 9pm and I’m sleeping much better I also came off Ropinarole so far it’s working not drowsy or hung over the next morning I also take an iron supplement
If DesertOasis suggestion doesn't work. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, 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 you take magnesium, calcium 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 tumeric 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 to slowly raise your ferritin. Ask for a new blood test after 3 months.
My level was 80 a month ago it’s taken months to increase from 32 just pleased to be off ropinarole I was desperate for sleep which I now get a full 6 hours any info is greatly appreciated I run 5 mile 3 times a week work full time and was exhausted but lay wake constantly moving every night I punch and massage my calf’s until I’m bruised for now its working and I’m great full but any advise is appreciated
Before getting an iron infusion, it's probably a good idea to investigate a) the cause of your low iron and b) why it isn't higher after 6 months of supplementing and increasing dietary levels. Especially if you're post menopause.
There are several conditions where low iron is implicated. Chat to a knowledgeable GP or haematologist about it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.