I need some advice please. I am currently on 300mg of pregabalin and one codeine tablet a day but this has stopped working. I struggle to get to sleep and when I do I am woken after 1 - 2 hours with restless legs and sometimes arms. I am at my wits end with exhaustion. I had a full blood count recently which came back as abnormal but when I saw the doctor he was unconcerned about the test results which were : - serum ferritin level 39ug/L. Folate 20.3ng/ml. Serum vitamin B12 194mg/I, Is there anyone who can tell me if these results are okay. I have had restless legs for over 30 years and been on various medications including pramipexole which I had augmentation with so I came off that and for a while the pregabalin seemed to work but as you know there seems to be no medications that work over a long period of time. I am seriously thinking of coming off everything. I would be grateful for your comments please.
Wits end: I need some advice please. I... - Restless Legs Syn...
Wits end
Your B12 and L. Folate are fine. Your ferritin is not OK. It needs to be over 100. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Doctors will tell you it is fine but what is fine for others is not fine for those of us with RLS.
What is your transferrin saturation (TSAT)? That would have been tested along with your ferritin.
If you can get an iron infusion, that would be best to quickly bring it up. If not 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 two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg 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 or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. 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. You can also get one
TSAT test, is that liver function if it is then here are my results:- Serum bilirubin 9 umol/L. Serum alkaline phosphate 54 IU/L. Serum total protein 62g/L. Serum albumin 33g/L. Serum alanine aminotrans 34 IU/L. Serum globulin 29g/L. That came back as being satisfactory. I hope the above makes some sense to you because it doesn’t to me. Thanks again for taking the time to reply to me
No it is part of the iron test.
On your pregabalin, did it work previously? If so add 25 mg and see if that works.
If it didn't work previously then you might as well come off it. You need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg (100 - 200 mg) every 2 weeks. If you do so you will have very few or no withdrawal effects.
Then another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you 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.
Thanks very much for your prompt reply. I have been on pregabalin for about 3 years starting at 150mg and increasing over the years to 300mg but that unfortunately is not working. I am reluctant to increase the dose knowing that over the next few months I will probably have to increase it again. If I do decide to come off it I will certainly do it gradually but I doubt the withdrawal symptoms are as bad as coming off of pramipexole.
Hello Caroline, I am so sorry to hear about your struggles. I am fairly new here and am grateful to everyone that shares their experiences and advice. I recently started taking pregabalin, which I understand won't "work" until I have been off pramipexole for several months? As of today, I am 2 days off PRAM (took for many years) and it has been difficult. I slowly weaned myself off, but I'm curious what it was like when you stopped taking it and how long it took for the pregabalin to start working. I hope you can get your iron up, maybe that will help. Thank you and good luck. : )
It should work after your symptoms settle from coming off the pramipexole which shouldn't take several months.
Thank you Sue, fingers and toes crossed.
Hi Abby, I was on pramipexole for probably 8 years and 2 years ago I decided to wean myself off due to augmentation. It took me probably about 2 years, cutting the tablets in half and then down to a quarter, it was a nightmare and then having to increase back up because of my legs. In the end I decided to go cold turkey and to be honest because I expected the worse it wasn’t as bad as I was expecting but I think it helped that I was only on the lowest dose and I was on a low dose pregabalin at the same time but everyone is different. I then increased my pregabalin up to 200 and then after about 3 months up to 300mg and that is what I am on now but unfortunately like many drugs you have to keep upping the dose which I am very reluctant to do. My next thing I have to do is increase my ferritin levels from 39 up to about 100 by taking iron supplements which Sue has kindly recommended, so we will see in a month or so whether my legs improve but I have had this condition for 30 years now I don’t expect them ever to go. Hope this helps you and wish you luck.
I am very strict with the types of food and drink I have. I am currently taking turmeric and magnesium because I was told that magnesium helps. Is dipyridamole the same group of drugs as pramipexole, if it is then I would be very reluctant to go on it because of augmentation, It took me nearly two years to wean myself off. Thanks again for your very detailed reply. It helps enormously to know there are people willing to give up there time for you.
No it is definitely not a dopamine agonist like pramipexole. I would never suggest a dopamine agonist.
That’s interesting, I will definitely look into it
Your serum ferritin is too low. If your transferrin percentage is below 45% you can arrange a private iron infusion at the Iron Clinic in Harley Street or Manchester. There are a few NHS hospital haematology departments that are aware of the link between RLS and Low brain iron, but it may be difficult to find one locally.Often, gabapentinoids do NOT work after years on a dopamine agonist.
You may have to push for a low dose, long half life opioid. Methadone and Buprenorphine are highly effective fit for RLS, but you will need a specialist to recommend them in the UK.
There aren't many RLS knowledgeable neurologists in the UK. However, a few will arrange iron infusions and will prescribe Methadone or Buprenorphine, but you need to check with your GP surgery first to establish if Buprenorphine is 'red listed'. If so, they refuse to prescribe Buprenorphine, even if directed to by the neurologist. There are ways around this. You can register at a GP surgery in another area where Buprenorphine isn't red listed.
Where are you?
Thanks for your reply. I feel it would be extremely difficult to find a doctor to arrange an iron infusion. From my experience they are unknowlegable about RLS.
I live in Wiltshire, England
Not far from Bath. Dr Robin Fackrell, a neurologist at the Spire in Bath would arrange an iron infusion. However you would have to pay to see him privately. The current NHS waiting time to see a neurologist is around 13 months.You can self refer to the Iron Clinic in London. It's expensive at around £800.
Thank you very much for that
you need a referral to a neurologist and take in the report from the Mayo clinic showing that Ferritin should be over 75 for people with rls. My oxeltra stopped working in the middle of the night but I now take one at 3pm and one at 10pm.
Thank you, I will but I doubt it will make any difference. I feel most doctors feel RLS is just a trivial condition
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