Hello well I've not posted for a while as I've been having blood tests and ferritin level tests for my RLS. Well on my first blood test gp forgot to test for the ferritin level. But gave me ferrous sulphate tablets 200mg 1 a day which gave me severe constipation (is this the same as iron?) and I put 1/2 a stone on in a week not good as I'm trying to lose weight.
This week my ferritin level result was 99 which I was told the gp was happy with by the receptionists. (is this an OK level?). I have been suffering for ages now and had my last DA about 2months ago. I'm just on gabapentin 900mg at night 1 dose at 7pm and the rest at bedtime. It's not been helping and I've been suffering can't drop off to sleep. I'm taking co codamol when I can't drop off and when the twitching starts. I'm in a vicious circle with this as I'm working full time and need to sleep as this is the only way I can I'm worried I'm gonna get addicted to codamol!! But I need it!! I take magnesium tablets 400mg b4 bed too. I rang gp to tell them all this and how it's depressing me I'm seeing the IAPT service as I have low mood and anxiety but not on meds for this. GP asked me why I'm not on ropinerole I explained I was on here and informed her of augmentation which I might as well been speaking Latin it went silent. She suggested I go on pregabalin. I asked what do I do with the gabapentin? She said to wean off it by taking 2 tabs 5days 1 tablet 5 days then start on pregabalin. Im worried I'm working and can't have anymore sick leave so the thought of weaning off and suffering more I can't do it as don't want to lose my job. I have some money coming to me and wondered if I saw a private specialist in the UK would this be a waste of money is there anyone who knows about this horrid syndrome and how it affects peoples lives feeling in despair with it all lately . Sorry its a long post need to speak to you guys as you are the best people to speak to about it and the only people who make any sense in the advice you give. Thank you
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Firstly, I imagine your doctor prescribed you the ferrous sulphate which is the prescription strength. This is possibly a mistake. You probably won't absorb most of it.
Unless you have iron deficiency anaemia, you don;t need this strong version. It may not help you and it will just upset your gut, as youve experienced.
I suggest taking an over the counter "gentle" iron. This will be much less upsetting for your gut.
In addition taking it every day is also a mistake. It's actually better absorbed if you take it every other day. There is some evidence for this. It's also less upsetting for your gut. Drinking a glass of orange at the same time, or a vit C tablet will help it to be absorbed better. Also take it on an empty stomach.
A ferritin of 99 isn't bad. 50% of RLS sufferers benefit from it being at least 100ug/L. You're just below that, but it looks as if you're one of the 50% who hasn't benefitted from it being (nearly) 100ug/L. In that case it may need to be as much as 300ug/L.
I think you can safely ignore anything your doctor says about iron.
It's unlikley you'll achieve 300ug/L by taking it orally, you may need an IV iron infusions. I think it's unlikely this particular doctors will agree with that.
I also think you can safely ignore anything your doctor says about any dopamine agonist. If yiour doctor raises this again, you can refer them to the UK National Institute for Health and Care Excellence (NICE) guidlines for the management of RLS which warns about the complications of dopamine agonists including augmentation.
If 900mg gabapentin isn;t working, you can increase it, anything up to 2400mg. but it might be better to switch to pregabalin instead.
As far as I'm aware, since gabapentin and pregabalin work more or less the same way, there's no need to wean off gabapentin before starting pregabalin, I believe you can just switch from one to an equivalent dose of the other.
I'll come back to you on that.
Since your doctor appears to be so ignorant. it might be a good idea to see a neurologist. If this doctor won't refer you to one, and it could take months, you'd have to see one privately. However, in this case check beforehand that they know how to treat RLS. Being a neurologist does not guarantee that they know anything more than your GP does.
You may only need one consultation. The neurologist can then tell your GP what to do, which would be good, because your GP doesn t know.
Don't tell them I said so!
PS, there have been some studies of switching from gabapentin to pregabalin and vice versa.
It is recommended that one be tapered down before starting the other if they are being prescribed for epilepsy, which is one of the things they are licensed for.
However, it has also been studied in people being prescribed them for nerve pain, which they are also licensed for. No adverse effects were noted when one was immediately stopped one day and the other started the next day with no tapering.
In additon as there was no tapering, then there was no interruption in pain relief.
Gabapentin and pregabalin are not licesnsed for RLS, they are prescribed "off label". Your doctor may be unfamiliar with prescibing them for RLS (instead of a DA!)
However the switch must be to an "equivalent" dose. just in case your doctor tries to ignore that. i.e. it's no good switching from 900mg to a starting dose of pregabalin ie. 50g as this may cause withdrawal effects.
I have information that 900mg gabapentin is equivalent to 150mg pregabalin.
Thank you so much for your advice I feel stuck as how do i get my GP to prescribe a stronger pain killer and your right she prescribed 50 g pregablin!! I only know how to approach this as they didn't know what I was talking about when I mentioned augmentation!! That's why I though seeing a specialist may be the answer what's your thoughts please??
Perhaps Jools can answer what dose of ferrous bisglycinate is appropriate, if you reply to her.
As she also says. if you find a private neurologist do all you can to find out as much as you can about RLS and it's treatment before you see anybody. Also if you can, see if you can find out what their expertise is. As I wrote, there's no guarantee thar any old neurologist is any better than your GP.
A neurologist may be more likely to prescribe an opiate than a GP. Most GPs, I imagine, will just refuse to opresxribe an opiate for RLS.
If they don;t know what augmentation is then you have to inform them. Find some authoritative information, print it out and show them. Howwever, if you don;t take a dopamine agonist, then augmentatuion won't be a problem.
You can print out the two links I gave you.
You may find the following two links useful as well.
Further, you can try printing out the paper about switching from gabapentin to pregabalin and send it to your doctor. I presume you have telephone appointments, or give him him/her the url. He/she will have a computer.
Ask for 150mg pregabalin.
If he/she refuses then I would change doctors, a doctor who fails to admit their lack of knowledge or fails to acknowlefge their mistakes is not to be trusted.
As pregabalin is the same class of meds as Gabapentin- there should be no reason not to make a straight switch.
I switched from 900 mg Gabapentin to 150mg of pregabalin without tapering down from Gabapentin with no difficulty.
However, bear in mind it is still early days. Only 2 months since you came off DAs. Withdrawal symptoms can last several months.
If the pregabalin doesn’t help ( you can slowly increase up to 300mg) then you may find adding a low dose opioid will help. Co codamol is the weakest opioid.
If your GP won’t prescribe an opioid or read the latest research, that’s when you may want to visit a private neurologist ( but research first- no point wasting money on someone who’s not up to date on the latest opioid studies).
I attach a link to the July 2020 Massachusetts General Hospital low dose opioid study for RLS. You could always try printing off and asking GP/ neurologist to read it. Also, as Manerva advises, ferrous bisglycinate is less likely to cause constipation.
I take 50mg in pill form as a maintenance dose but when trying to raise above 100, I took 50mg pill and 45mg in patch from PatchMD in the USA. Every other night just before bed.
I also take magnesium citrate every night to avoid constipation & because it’s supposed to help RLS.
Hope you can raise levels. Do also ask about an IV infusion.
I can't see that happening at my GPs no knowledge of RLS I will gain my courage up to ask!! Thanks for this advice I honestly don't know wot I'd do with out this forum I just feel at a loss with it all x
You can always by pass your GP and self refer. Find out name of haematologist at your local major hospital. Write and explain benefits of IV infusion. Ask to see a haematologist and if you get an appointment you can then hand a copy of research papers. You never know- as usual with the NHS it’s hit and miss as to whether you get treatment or not.
Hi I’m Alan I got up to 8 ,600mg tablets of gabapentin and managed to get off them as I thought it way too bag a dose but it did work but I was mainly taking them for neuropathic pain,
So now for the pain I take Oxinorm it’s a morphine based drug but that stops th RLS for a while,
Thanks Alan I am sensitive to morphine so I'd b a bit wary taking a morphine based medication but thanks for replying we all help each other on here don't know wot I'd do without this forum
Hi Allan, I just read your reply and had to respond. I am stunned!
The maximum licensed dose of gabapentin is 3.6g (i.e., 3600mg)
It seems some doctor may have pescribed you an overdose.
If this is correct, I hope you have now reduced to no more than 3600mg and you have reported this doctor to the General Medical Council for possible malpractice,
You mentioned twitching. Is that like periodic limb movement? My RLS is this agonizing sensation that is almost as difficult to describe as it is to live with, but everyone experiences it differently.
I have found that Clonazepam works best for my PLM. The only thing that works for the creepy crawly achy sensations is Oxycodone (So far). I have been on Pregabalin and Gabapentin, but neither worked and made me really hungry.. I take a high dose of Elavil and Duloxetine, which are working much better since my dose was increased.
If you can afford it, I would definitely see a Neurologist privately. I am in Canada, and we have a similar health care system. I would suggest you go on a doctor rating site to look at the reviews before deciding which doctor to see.
It's such a horrid disorder. I think it's more intolerable than pain. I really hope you get some relief soon.
Thanks for your reply its an awful syndrome that no one understands except on here no gp understands or knows anything about it which they admitted just left on your own!!
Hi - I think you said you take one dosage of gabapentin and magnesium at bedtime, if so, this may be contributing to your problems as I believe magnesium can affect the absorption of medicines including gabapentin. Just a thought, but if you do, you could try taking the magnesium 2 to 3 hours apart from the gaba to see if that makes any difference.
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