Hi everyone,
My RLS started when I was pregnant 5 years ago but has reared its ugly head again, affecting both arms too.
I'm in the UK and I'm going to see the GP this week but wondered if you could tell me what medication you are taking, the dose and whether it's helping?
Im a nurse and I'd like some idea of what I want them to do before I go in.
Many thanks
Sophie
Hi Sophie,
I am also a nurse and developed RLS whilst pregnant with my second daughter. I would recommend the Buprenorphine patch if the GP will pewscribe it for you.
Good luck,
Jackie
Jackie, interesting that you mention buprenorphine. I guess you know this is a high potency opioid.
These are currently only recommended for "refractory" RLS, but there is much interest in it.
Some people are pushing for it as a first treatment for RLS, by passing the first line treatments.
Are you using it and how did you manage to get a prescription? Did you take anything else before?
Hi Elffindoe,
Thank you so much for replying to me. I used to be on Zomorph, slow release morphine 40mg twice a day, plus 50mg of liquid Oramorph overnight. I was very happy on that combo. but as GP's are much more retiscent to prescribe these now, along with the advice of the prictice Clinical Pharmacist, we decided to try Buprenorphine. I was reluctant, taking the if it 'aint broke, don't fix it approach but did try it. It is actually better than my old regimen and I haven't looked back.
I am on Pramipexole 0.088mg, was twice a day but following your advice actually, I am down to just one tablet at night. I am having problems going lower but I am determined to get off this drug. I am very scared about this last tablet and am going to try reducing by a quarter of a tablet for a few weeks, then half and so on....
I have M.S. and had a serious head injury, which is why my dose of Buprenorphine is rather high. I am on the 70mcg patch, and have a supply of 10mcg patches for when the pain is too severe.
Any further advice you can give would be very gratefully received. Both you and Joolsg have been fantastic!
Jackie x
Hi Jackie,
I'm pleased you find the buprenorpine better than the morphine. This does support its use.
I'm sorry to hear about the MS and pain. I hope you manage.
I agree if you want to get off the 88mcg pramipexole it could help to cut it in quarters.
This is what I did when weaning off pramipexole.
Hopefully, you're also aware that it can be helpful to ensure a good ferritin level, at any time, for RLS, but particularly when withdrawing from a DA.
Another suggestion, of insomnia is an issue whilst withdrawing is to try a benzodiazepine or a Z drug.
Hi,
Thank you, the pain is a real downer but I am off the anti-depressants. After reading posts from you and Jules, I spoke to my GP, she is supportive and we weaned me off of those. I will speak to her about trying some Benzo's while I wean off the DA.
My ferritin levels are in the toilet at just 7. I am also anaemic with a level of 23. My doctor has referred me for an Iron infusion (quite hard to come by right now), because I have tried iron & gentle iron supplements and they make me very ill indeed.
Any particular Benzo that you can recommend? Thanks for taking the time / interest to help me.
Jackie x
Oh Jackie!
Glad to hear you managed to get off the ADs.
Quite right to have an IV infusion with iron that low.
This will treat your iron deficiency.
Sorry to say it will probably have little effect on your RLS. The iron will be used to correct blood deficiency and build up your stores.
Then, and only then can it get to work for RLS.
The usual benzo for RLS is clonazepam. A disadvantage is it's long lasting and can leave you drowsy.
Z drugs are short acting but can cause other sleep disturbances, especially zolpidem which can cause sleep walking. Zopiclone, I've tried without problem.
Wait, wait, don’t jump to meds. Do you have any inflammatory conditions? How about iron deficiency? Any hormone replacement therapy? Any melatonin? Any weight issues? What about antidepressants or antihistamines or antacids or statins?
Any and all of the above will trigger symptoms of RLS so it can be an easy fix. Look at my profile page for what I do for my RLS. Plus numerous people on here find it effective to have their last meal before 7pm and then fast all the way till morning. It won’t hurt you to do this and it will certainly make me feel a lot better that you tried some alternatives to opiates first. 😅
Yeah, especially since it's affecting your arms as well, I feel like something is up with you besides your pre-disposition to RLS. You went from 0 to 100 it sounds like. My money is on a prescription med you're taking or Melatonin.
Thank you for this. I currently take
Sertraline 50mg once daily
Propranolol 40mg once daily.
I am a healthy weight, I exercise regularly, have never been anaemic.
Many thanks
Hi Sophie, I believe beta blockers (I take one...for now) are ok, but I'll let other people on here comment. The sertraline will drive your legs (and body) crazy. It worsens the symptoms of RLS, but does not make the genetic condition itself (which is lousy d2 receptors and low brain iron) any worse. There's no diplomatic way of saying this, but you can't have RLS and be on SSRIs. You just can't. The doctor will want to give you drugs which will lessen your symptoms, but which WILL down-regulate your already pathetic dopamine receptors. So taper off now. There's Wellbutrin or Trazodone which do not provoke symptoms of RLS and if anxiety is an issue there's Klonopin, however, the Wellbutrin and Trazodone should help with anxiety as well. When I was 39-41 I was taking melatonin and my barely there RLS turned into the devil incarnate. Fortunately, I found the iron that is mentioned on my profile page which alleviated the symptoms until I realized that melatonin is a big NO . When I stopped the melatonin my RLS went silent. Your RLS will too. Or you can try the iron on my profile page. If it gives you relief, as it did with me and the melatonin, then I guess you can stay on the SSRI. Someone will be along here soon I'm sure to give you more advice.
And do me a favor - if your doctor wants to give you an opiate or something like Pregabalin (both of which will worsen your receptors, albeit temporarily) while you're tapering off the SSRI, please try the iron first. I would say you need at least 50mg of the ferrous bisglycinate, or even higher, to act as a counterweight. It provided me with relief the first night and every night. If it doesn't do the same for you then move on to whatever the doc has given you. You don't want to lose sleep and taper off the SSRI - that's a nightmare.
Hello Sophie.
Sorry to hear your RLS has returned.
Below, I"ll give a link to the latest medical recommendations for the management of RLS.
I'll also give you a link to the UK NICE guidance for GPs. The latter perhaps not being quite so informed.
However, I'll give an outline of the mainnpoints and forewarn you of the difficulties you may face.
Firstly, I think it's important that should know that GPs are able to help manage your RLS. Sometimes they may wish to refer to a neurologist.
This may be time wasting, unnecessary and actually of little value.
Please be aware, that despite research into RLS and authoritative recommendations, most GPs can be profoundly ignorant and in many cases neurologists are no better.
You may find then that having a good relationship with your GP is of great importance.
You will need to inform yourself about all aspects of RLS and be able to share this information with your GP.
There are three main aspects to the management of RLS.
1) General consideration
2) Non drug remedies
3) Medications.
1) These are things that must he considered for ALL cases. Do NOT ignore them.
2) Generally are remedies for milder cases and as an adjunct to other remedies.
General considerations
a). Iron therapy
b) Aggravating factors.
NOTE Brain Iron Deficiency is a fundamental cause of RLS. Effective iron therapy, when successful may eradicate the need for medications. However, this may be a longer term strategy.
Even if you do resort to drugs. Don't forget this.
Aggravating factors are things that make RLS worse.
Alcohol sugar, caffeine and other stimulants can worsen RLS in hours.
Others may take longer and have longer lasting effects.
The main ones are medications including.
Antidepressants
Anything containing a sedating anthistamine, cough medicine, sleep aid, antiallergy, antiemetic.
Anything containing a dopamine antagonist, e.g. antiemetic.
Proton pump and H2 inhibitor antacids
PLUS many others.
If you take any, it's best to stop or switch to alternatives.
Also, (not mentioned in recommendations) are diet, inflammation and gut health.
These are interrelated. The key is inflammation. More detailnif you ask fir it.
Generalky speaking a low carbohydrate is good.
Vitamin B12 and vitamin D deficiency if corrected cannhelp RLS. A good anti-oxidant can help, selenium or celery juice.
DRUGS
All RLS drugs are potent, dependency producing and have side effects.
This is an area in which an ignorant GP can potentially cause you a lot of unneccessay suffering.
TAKE heed.
Which drugs are appropriate depend on the severity of your RLS.
Drugs for "intermittent RLS", i.e. symptoms no more than 2 X a week are different than those for chronic persistent RLS.
WARNING. You have a right to informed consent and for thesecdruhs you may have heard of the BRAN acronym.
Benefit
Risk
Alternatives
Nothing - i.e. consequnces of no treatment.
Many GPs ignore this legal/ethical requirement
Many still prescribe a Dopamine Agonist (DA), pramipexole, ropinirole or rotigotine for RLS without identifying their MAJOR COMPLICATIONS and without naming alternatives.
DAs are no longer recommended as the first drug of choice.
The first drugs are either gabapentinnor pregabalin.
Here's some links you could read and refer your GP too. They support what I've written. I can offer further detail if you wish
mayoclinicproceedings.org/a...
Hi Sophie,Can you tell us all the meds you're currently taking, including OTC meds.
The first thing your GP should do is take a full panel bloods. Ensure serum ferritin is above 100, preferably 250 and serum iron above 60. Pretty sure many of us would have completely avoided the drug route ( and permanent damage to our dopamine receptors) if our GPs had checked our bloods.
Raising levels will resolve RLS in the vast majority so is an essential first step.
Elffindoe has given you all the information you need. If your GP suggests dopamine agonists, be VERY wary as they're no longer first line treatment amongst experts due to the risk of Impulse Control Disorder ( about 17%) and Augmentation of symptoms ( about 8% per year, each year, so usually inevitable after patients have been on for several years).
Hopefully you'll be able to resolve it by raising ferritin or making lifestyle adaptations ( if you have food or drink triggers).
Thank you all for the responses so far. Medication I am currently on:
Sertraline 50mg once daily
Propranolol 40mg once daily
My symptoms have been increasing over the last few weeks but now I'm struggling a lot with RLS in both legs and arms at night.
Both trigger RLS. There are RLS safe anti depressants which include Trazodone, lamotrigine, depakote, carbamazepine but do you take them for depression or anxiety? If anxiety, maybe the benzodiazapines or Alpha2Delta ligands would be better.
I take the sertraline for depression and the Propranolol for anxiety.
Trazodone is prescribed for depression, period. It has a good safety profile and a long history. I, for one, like this class of drugs better than the SSRIs. It gets exactly equal ratings for "depression" by users as that of Sertraline:
Discuss switching to trazodone for depression and possibly a benzodiazapine like diazepam or clonazepam or pregabalin for anxiety. Pregabalin is also first line treatment in the US for RLS and is more favoured by UK neurologists who know about the augmentation problem with Ropinirole, Pramipexole and the Rotigitone patch.
Trazadone is clearly classed as an antidpressant more often used as a sedative. Not particularly useful for depression.
As far as I can see all the other three are anti-convulsants!
Yes but all are used as mood stabilisers. As all SSRIs and SNRIs trigger RLS, these are the alternatives suggested by rls.org in the USA.
The list of safe anti depressants by the US RLS foundation
I appreciate that mental health definitions vary between the UK and the US.
I can see that's one reason why the rls.org might recommend these drugs. Also because they're safe.
However mood stabilisers are not the same as antidepressants.
If somebody is depressed they need something to lift their mood. An antidepressant.
Mood stabilisers do not do that. As named - they help prevent mood swings. PREVENT.
Hence used for bipolar disorder.
I believe it's really important that if somebody really needs an antidepressant then they should take one that's some chance of being effective.
The real problem is that Drs overprescribe antidepressants, fail to offer alternatives and keep people on antidepressants too long.
I note a BBC report today indicating that NICE are bringing out new guidelines for depression in which drugs are NOT the first line treatment.
I hope these come out soon and therapies are funded. This will hopefully avoid poor folk with RLS falling in a chasm between ineffective antidepressant treatment and compromised RLS treatment.
Its great to see NICE bringing out alternatives to depression treatment. I have come off my low dose antidepressant several times but always end up back on it so it will be nice to have other options.
Having to choose between depression and RLS is a nightmare so thank you for all of your helpful comments.
HI Sophie I have recently had to choose between my SSRI and RLS. I tried gradually weaning off of escitalopram, which I have been on for about 20 years. Suddenly my anxiety became crippling. I could barely function, so I had to go back on the SSRI. I emailed Dr. Buchfurer about this, and he said that when meds are needed for anxiety or depression, he "treats around them" as needed. Within a few days of re-introducing the anti-depressant, I had a significant increase in symptoms, especially during the day. It's been over three weeks, and interestingly, the RLS has actually been getting better. My understanding is that some antidepressants are far worse than others for exacerbating RLS. I agree with Elffindoe about trazodone. It's great for sleep but it's a lousy anti-depressant. It may be that the beta blocker and AD are doing a double whammy on you, and you need to re-think your meds profile.
Hi Sophie,
I have been suffering of RLS since I was 18. Now I am 84 and I have severe RLS. The doctors gave me mostly Parkinson medicines that have not helped me a bit. 25 years ago, a Neurosurgeon from Kaiser Permanente in Los Angeles, Dr. Enes, prescribed 3 mg Clonazepam, 2 mg Pramipexole (Mirapex) and 3 tablets of acetaminophen/codeine (Tylenol 3), 300 mg/30 mg each ( that is Paracetamol/Codeine for the Europeans). I have never had a syntome since then. He mentioned not to allowed any doctor to lower the dosage. Find a Neurologist specialized in RLS and try to convince him to prescribe the above for you. It wouldn't be easy. Good luck. P.S. Do not go to a regular doctor. They have no idea of RLS.
Hi, just to let you know, there are no specialised RLS neurologists in the UK.
Dopamine agonists, such as Mirapex are no longer recommended for RLS because of the high risk of complications.
You have been very very lucky to keep on this for long, most people only manage a few years at most.
Luckily there are now safer alternatives.
I never recommend a dopamine agonist as a first med for RLS and when I come across somebody already taking one, then I usually tell them about the complications because
a) they can be life changing
b) doctors fail to warn people about them.
You may find this link informative.
pubmed.ncbi.nlm.nih.gov/274...
You may also find it useful to read the many posts on this site from people suffering augmentation due to pramipexole.
Thank you guys for the advise. In the last months I had a filling about Pramipexole augmentation.I will talk to the doc to slowly switch to Gabapentin Enacarbil (Horizant).
Do you have a better idea?
2mg of Pramipexole is far in excess of the maximum and these drugs are no longer first line treatment. The new Mayo guidelines by the top US RLS experts point out why. Too high a riskof ICD and augmentation. As Elffindoe says, you're lucky that you're not experiencing worsening of your RLS.
Thank you Joolsg, I have replay to both of you on Elffindoe's message.
Be careful weaning off Pramipexole. As you've been on such a high dose for long time, the minimum period should be 12 months. It can be more difficult than heroin or crystal meth Withdrawal.If you're still in California, Dr. Buchfuhrer works out of Redwood and Stanford and is a top RLS expert. He recently co wrote the Mayo algorithm.
He would be able to get you safely off Pramipexole and prescribe new meds.
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