Hi everyone, can i get some advice and suggestions please.
I take Pregabalin 25mgs x 4 times a day, one in the morning and 3 in the evening. I also take 200mgs of slow release Tramadol twice a day, morning and evening.
For the last month to 6 weeks, my RLS has been of the scale. My legs start up around 10/11 every night, and they do not stop until around 10 in the morning, so i am on my feet all this time.
I am thinking it could be the Tramadol, as i know it can worsen RLS, so im planning on talking to my doctor to change it from the slow release to the normal pill, with the intention of weaning myself of it. If my doctor will change it, how slowly do you think i need to go on weaning please.
I already augmented on Prami and it was rough so not looking forward to this, but i cannot live like this.
I recently saw a new neurologist, told her my RLS history, and she said there is nothing more she could give me, as ive tried everything she's allowed to give me, so she has decide to send me to the movement disorder clinic at the same hospital, she did seem to know her stuff as she talked about ferritin levels and other stuff we all know, my ferritin is 67 she told me, from a blood test recently when i was in hospital with sepsis, she wont help getting my levels up as 75 is classed as ok for us here (UK)
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It's not the tramadol. You don't need to take pregabalin in the morning unless you have RLS during the day which would be unusual. . Add it to your dose at night. The pregabalin you are taking is a low dose. According to the Mayo Updated Algorithm on RLS the usual effective dose is 200 mg to 300 mg so ask for 25 mg capsules/pills and 2 days after adding your morning dose to your evening dose increase by 25 mg every couple of days until your RLS is controlled.
About your low ferritin: 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 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. 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.
Hi, thank you Sue, I do get RLS during the day most days, i have it now, its not stopped all night, if it eases and i try to sit or lay down, then the RLS gets bad again, at the moment ive been on my feet bow for over 36 hours, apart from the odd five mins sit down, and no sleep at all.
I understand Tramadol can cause augmentation also ?? will sort out getting some iron ordered today, i dare not go out and get it, as im like a zombie at the moment !
That's terrible. I'm so sorry for that but hang in there. It will get better.
Increase your pregabalin during the day too. Yes tramadol can cause augmentation but since you are on a low dose of pregabalin I would try increasing that first before weaning off tramadol as that is the more likely cause of your RLS. While I said 200 to 300 is the usual effective dose, that would be your dose at night and not your total dose. You can take up to 600 mg total dose.
I am so sorry to hear about the sepsis. That means your serum ferritin will actually be a lot lower than 67ųg, because infection causes a very high serum ferritin level.
The doctor clearly does NOT know her stuff because:
1. Your serum ferritin is too low for RLS. Both NHS and NICE guidance require treatment of the low ferritin.And it's difficult to get from 67 to above 75ųg with pills, so many UK neurologists would arrange an iron infusion. If you can't get one on the NHS, you send your blood test results to the Iron Clinic and they can arrange an iron infusion privately for £800. In the meantime, if your transferrin percentage is between 25 and 48%, you can safely take ferrous bisglycinate every other day on an empty stomach.
2. As SueJohnson advises, pregabalin should be taken at night and the average dose is 150mg.
3. Tramadol can cause augmentation so it would be better to switch to another opioid. You don't then wean off tramadol. You make a direct switch overnight.
Why does your doctor say there is nothing more she can give? That's incorrect. Targinact is licensed for RLS in the UK and is taken twice a day, every 12 hours. You can make a straight switch from 200mg tramadol to 40mg of Targinact overnight. It's probably better to take Targinact every 6 hours to avoid mini opiod withdrawals.
So, if you see her again, you can ask to switch to 100 to 150mg pregabalin, taken at night and 40mg of Targinact ( or the cheaper plain Oxycontin) 4 times a day.
Also arrange an iron infusion and start taking ferrous bisglycinate every other day.
If switching to Oxycontin doesn't help after 6 weeks, you can then consider pushing for methadone or Buprenorphine.
Be very careful at the Movement Disorder Clinic. Most are run by Parkinson's neurologists and many are still wedded to dopamine agonists. They may try to persuade you that the Rotigitone patch is great and will not cause augmentation. It will. They're incorrect.
Which hospital are you attending? It may be worthwhile switching to a better hospital.
Dr. Bagery - at the Barberry Clinic Birmingham is very knowledgeable about RLS. He will prescribe opioids including buprenorphine and may prescribe an Iron infusion, He is worth seeing even if you have to go private.
Thank you Sue, this is great to know, as i only know of a doctor in Wales prepared to treat is the right way, so im going to look into thisa first thing tomorow, got the iron and vit c on order. Ive just had a horrendous weekend, back and forth to hospital with rls in over drive and non stop, so just got home after all that, only be to give paracetamol, and entinox, and told there is nothing they can do for me as its "specialised treatment" i feel like ive be battered by a boxer !!!
Hi , Buprenorphine changed my life literally , I couldnt take any more. I saw a neurologist first privately then on the Nhs in Gloucestershire. I asked him to put me on Buprenorphine , he really specialises in MS but agreed. From day 2 my Rls has gone 100% , its amazing. Only problem is getting a Gp to prescribe. I have spent hours and hours battling . At the moment consultant is still prescribing but I feel he would rather not . Its always a hassle getting them .Good luck
Saw my gp today, hes said to uip the pregabalin to 150 mgs and stick with the tramadol fort now, hbe also gave me a weeks suppl,y of 3.75 mgs Zopiclone, i must say im wary of taking this, and thought on this guys ??>?
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