which DA should I go for

[Sanmass]

my GP has referred me to an Neurologist but the waiting time to see him is over a year, he suggested to my GP that try again with Pregabalin on a higher dose or go back on a DA but a slow release one. I augmented on Ropinerole about 8 years ago and weaned myself off of them, I tried Pregabalin a while back but did not get on well with it so am reluctant to go back on Pregabalin/ Gabapentin. Can anyone suggest what would be the best DA to try? Ty

[ChrisColumbus]

What dose of pregabalin were you on and how long for?

And did you ever try gabapentin? As SueJohnson advised previously, some people find the side effects less troublesome on one than the other.

Or a low dose opioid could work for you - although depending on your area your GP may need a neurologist to prescribe...

[Sanmass in reply to ChrisColumbus]

hi Chris, I was on 300mg of Pregabalin but it didn’t agree with me. I am wary of trying Gabapentin because of these side effects. The Neurologist my GP wrote to won’t prescribe an opioid until I try a DA again first. I was on Pregabalin for about 5 months, it was okay at first until I had to increase dosage. Tyvm for replying.

[Joolsg in reply to Sanmass]

You need to find a neurologist who is up to date on the latest research and treatments, rather than one that is following outdated NHS /NICE cks guidance. You may have a few good years on another DA, but inevitably, augmentation will happen again & you will have to go through withdrawal.

Try to get a referral to a sleep clinic. As you augmented on DAs and didn't tolerate pregabalin, a low dose opioid is the next medication.

A sleep clinic is more likely to understand the dangers of DAs and the safety and efficacy of low dose opioids. I hope you can find a knowledgeable doctor.

[Sanmass in reply to Joolsg]

thank you joolsg I will have a look for a sleep clinic, yes my GP will only listen to the Neurologist so I am thinking of going private instead of waiting for the NHS one

[SueJohnson]

If you augmented on ropinirole, you will augment on any DA. Did you ever take iron or have an iron infusion to improve your ferritin? I remember it was 98, but many people need it to be 200 or 300 to help their RLS. Also I suggested dipyridamole. Did you ever try that? I don't remember what your side effects were on pregabalin and what they were on gabapentin. If you could remind me, perhaps I can suggest something to relieve them. Also you were going to try kratom. What happened with that? Another possibility is to get medical cannabis. Joolsg can tell you how to get that. Otherwise you best choice is to go on opioids. Buprenorphine is the one that seems to be the best. You may have to pay to go private to use a doctor that will prescribe that. You can try printing out the section in the Mayo Clinic Updated Algorithm of RLS on opioids to show your doctor at Https://mayoclinicproceedings.org/a...

[Sanmass in reply to SueJohnson]

hi Sue, no I never tried taking iron, I do take B12. Pregabalin made me dizzy and spaced out for want of a better description and I sometimes struggled to form sentences, the Neurologist wants me to try a DA or Pregabalin again before he will try an opioid, so my GP is following his advice. I am in the uk so was unable to locate a reliable source for kratom as I would easily try it. Tyvm for replying.

[SueJohnson in reply to Sanmass]

You can get kratom from [e-mail] or from kratom.co.uk. Both are discrete. Please don't try a DA - you probably remember how hard it was to come off it. I don't think you want to go through that again. If you have to, try pregabalin again. What was your experience on gabapentin?

[Sanmass in reply to SueJohnson]

oh that’s great, I’m going to order some, will they tell me what to order and the dosage? I never tried Gabapentin, I had such a horrible experience on Pregabalin I have been wary to try it. Yes I do remember the augmentation from Ropinerole but am struggling just now with lack of sleep and would give anything a try. Thank you Sue

[SueJohnson in reply to Sanmass]

Red vein is the kratom recommended. The recommended starting dose is 2.4 grams. I would suggest you ask for gabapentin instead of pregabalin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The beginning dose is usually 300 mg gabapentin . It takes 3 weeks to be 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. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

I would also suggest you start taking iron. Take 325 mg of ferrous sulfate or 25 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. Ferrous sulfate is cheaper and for most people does not cause constipation but iron bisglycinate is much less likely to. If you take magnesium or calcium take them at least 2 hours apart from the iron tablets since they interfere with the absorption of iron. 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. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. 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 3 months if you are taking iron tablets. Be sure to stop taking any iron tablets including in any multivitamin 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45%. and your ferritin to hopefully be over 200.

[Sanmass in reply to SueJohnson]

I will ask my GP for Gabapentin and see how it works for me, thank you for info on iron, I will also start taking it. Many thanks Sue

[pennygates in reply to Sanmass]

Unfortunately it didn't help me, but I believe that to be very unusual.

[pennygates in reply to Sanmass]

I had problems getting kratom delivered by courier in the UK, too far away from London. I found a company called Go Pure, who could deliver via postal services discreetly. It is a reputable company based in the Netherlands, who can handle the exchange rates etc. I bought some late last year, quite easily. I bought red vein kratom. There are lots of youtube help videos, showing how to make the tea, and measurements etc. (simply by boiling it in a pan). Good luck.

[Sanmass in reply to pennygates]

I have messaged Kratom.co.uk so will see what they say as I’m very far away from London, if not thank you for other supplier. Thank you for your help.

[sigurdur in reply to pennygates]

Don't boil kratom. It kills of the active stuff. Dissolve it in water 30-40c.

[Sanmass in reply to sigurdur]

good to know, thank you for info

[pennygates in reply to sigurdur]

Think I was talking about my Chinese herbal drink the acupuncturist advised me to make, by boiling up twigs and herbs. I don't use kratom, as it didn't work for me in terms of RLS. The side effects were too much for me to cope with. I contacted Go Pure, to make sure I was using the correct amount, and sought advice about it elsewhere. Youtube was good, plenty of help about how to make it as a tea. But I had to discontinue it as the side effects were too much for me. I see that is unusual, as most people find it very beneficial. I'm very sensitive to many things. One problem is taking other medication as well, it can interact with these. I'm on medication for several other conditions, so this may have reduced kratoms' efficacy. I was very disappointed as I was hoping it could help me whilst reducing pramipexole.

[Sanmass in reply to pennygates]

that’s a shame it didn’t work for you, at least you tried. I’m going to give it a go but if not it’s back to the prescribed meds, we will try anything to get relieve. Ty

[pennygates in reply to Sanmass]

Yes we do try everything, and hope that we will hit upon the best help for ourselves. I was also concerned about using it and driving, a bit fuzzy about the consequences if I was involved in an accident, and was tested by the authorities. (I'm no longer driving due to worsening glaucoma). But we take these risks with any sedative medication, even on prescription . I informed DVLA of my prescription drugs. It's a desperate choice at times.

[pennygates in reply to Sanmass]

I hope that it does work for you. It would be good to hear about that.

[Sanmass in reply to pennygates]

I will let you know how I get on, ty 😊

[UpsideDownInsideOut]

I know you’re feeling desperate but please try to hang in there and if you have the funds, go private.

Another DA is eventually going to be utterly horrendous for you. I know that you’re reluctant but why not give gabapentin a try? What have you got to lose?

I’m sorry if that’s not helpful. I feel really worried for you.

I’d definitely start on iron, that could help a lot.

Take care and keep chatting with us.

[Sanmass in reply to UpsideDownInsideOut]

yes I will ask my GP for some Gabapentin, after thinking about it it’s crazy to go on a DA again, thank you, this group is excellent for advice.

[Felicity21]

Hi there, I am on 0.26 Mirapexin prolonged-release tablets (pramipexole) which I take at 8 pm. At 9 pm I take 2 co-dydramole (plus 1 extra- strength Senokot to prevent constipation) plus 0.5 mg of Clonazepam to help me sleep. That works quite well for me. But you must not increase the Mirapexin! I drink 2 mugs of Rooibos tea late afternoon which somehow has a relaxing effect on me. I avoid apples, pears, grapes, raisins, bananas, strawberries, onions, garlic, mayonnaise, margarine and all sweeteners and artificial colours. I had no luck with Gabapentin and am trying to avoid strong opioids. Good luck!

[Sanmass in reply to Felicity21]

that sounds like quite a cocktail, the only drug I would get is the pramipexole, that’s interesting all of the fruit etc you avoid you’ve obviously tried and tested everything. Thank you for info.

[Shumbah]

So years ago my GP who I knew very well as I had other business dealings with him and I was a friend of his wife’s said this to me .

I am going to write you a script for Sifrol but I DONT want you to take it come back with a list of side effects for your chart.

Doctors have to jump through hoops to cover themselves before prescribing opioids

Get the script fill it and Do NOT TAKE IT look up the worst side effects contact the doctor and tell them you had to stop because of …..

If you jump through the hoop don’t take them , you will be in the box seat.

Yes it is BS that we have to to lie , put you own best interests first instead of wasting another r few years weaning off horrific medications .

I used to go back within the week with my list of side effects and if doctors did nothing for me I went in 2 to 3 times a week so they were absolutely sick of seeing me . The dripping tap and all that .

[Sanmass]

that’s a good idea, only problem I have is GP won’t prescribe opiods until I see the Neurologist which is probably about March next year 😫