Hi,
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
What is your serum ferritin number?
Amitriptyline is not a good fit for RLS sufferers, generally. It tends to worsen the fizzies.
Gabapentin or Pregabalin are both effective for RLS.
Your doctor is not up to speed on RLS treatment.
Would it be possible to eliminate him/ her --- ( from your life😎)
Cheers.
Sorry. Yes my ferritin number is 30 and has been for 6 months despite being on supplements
My second laugh for the day. You always come through. "Would it be possible to eliminate him/ her --- ( from your life😎)" 😀😀😀
Have you ever tried CBD cream for RLS?
No.
Has anyone reported using it on here?
I'm new to the RLS section, having joined ~1h ago. For my mum, we are likely to try to address root cause eg her serum iron (and ferritin) have dropped sharply over time her legs have worsened in last 6m. Whilst it's still in normal range, tests were done late a.m. when it would've peaked.
CBD cream is a fall-back I've considered.
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
See Dr Murphy. He will probably prescribe the iron infusion.
Hi Sue. Thanks for all the help. Am I allowed just to see any doctor? Would I have to change surgery? Is he a private doctor? Or nhs?
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.
Hi Sue,
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.
£800 is quite a lot 🙈. How long will my iron levels stay up?
Hi Luna, can you think of anything that drove you to the DAs? Are you on HRT or an SSRI or calcium channel blocker or Metformin?
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.
Amitriptyline will worsen RLS.
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.
More good news:
Amitriptyline sent my RLS through the roof!
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...
Hi
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
Hi Fur, how much iron do you take and what time of day?
Hi DesertOasis
Ferrous Sulfate 1 x 200mg on a morning
Nice! One time you might want to try taking the iron at night, before bed (empty stomach) and see if you can feel better still.
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.
Do you know what your ferritin is?
Hi Sue
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
What are you taking now for your RLS?
Hi Sue
Nothing except Amitriptyline 10mg 1 at around 9pm sleep for about 6 hours without constant movement and no hang over effect so far it’s working
That's great. Do you have RLS when you wake up after 6 hours?
Very mild rls which is ok and stops as soon as I get up sleep was my priority now don’t have constant blood shot eyes
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.
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