Advice on Sifrol

[RobynW]

Hi I have just recently been diagnosed with Restless Leg Syndrome after suffering for 4 years and no sleep and having every test possible to find out what is wrong. I have been on Sifrol now for about 2 weeks and I must say I can actually go to bed now and not have any pain and I am able to stay asleep for at least 4 hours without any issues. But what I am wanting to know if anyone else is on Sifrol and if you are experiencing weight gain.

[Hidden]

Hello Robyn.

Since you mention Sifrol, a brand name fior pramipexole, I am guessing you live in Australia.

Pramipexole when first taking it is, I believe, very effective for 70% of people. When I first took it. even the lowest dose, it eliminated all my symptoms and I slept. I thought it near miraculous.

However, although it's possible your doctor discussed the consequences of taking this drug, it may be that you didn't absorb what they said or, they didn't say anything. In that case it might help you to have some further information about pramipexole.

Pramipexole is one of a group of 3 drugs used for RLS which are called "dopamine agonists" (DAs). The other two are ropinirole and rotigotine.

All the DAs act in the same way and they are usually effective immediately and they are particularly good at relieving the physical symptoms of RLS. They are not particularly good however, in promoting sleep.

They do have some side effects which vary in strength between individuals. I'm afraid that weight gain is listed as one of them. Not one I ever experienced.

Further than that, your doctor should have made you aware of the possible complications that can occur with the DAs. AS regards these complications, unfortunately pramipexole is the worst of the 3.

These complications are augmentation, loss of efficacy and Impulse Control Disorder (ICD).

ICD is less common than the other 2 complications,

Ity's hard for me to say if you've only been takiing pramipexole 2 weeks if you've developed an ICD, I would imagine it's not long enough. However, an ICD is where people find themslves unable to resist compulsively repeating certain behaviours. In some people this may be gambling, in others excessive impulsive shopping and in others overeating.

So it may be just that you have a side effect of pramipexole i.e. weight gain, or you may have started developing an ICD in which case you would probably find yourself craving food.

As I say, this isn't that common and it may be just a side effect for you.

The other 2 complkications i.e. augmentation and loss of efficacy are much more common and it's improtant that you are aware of these.

Loss of efficacy usually precedes augmentation. This is where the drug starts to fail and RLS symptoms start to get worse. Doctors often respond to this by increasing the dose. Unfortunately this then leads to augmentation. Augmentation is a paradoxical condition where instead of relieving your synmptoms the DA makes them worse. Significantly worse.

Not everyone gets augmentation but 32% of people takling;pramipexole for 3 years get it and 60% of people taking it 8 years. Some people get it after only a few months. There is probably one new member of this forum every day who have started getting augmentation due to a DA.

The higher the dose of the DA and the longer you take it, the higher the risk of augmentation.

I do hope your doctor warned you about this and also made you aware that because of this, you need to keep the dose as low as possible for as long as possible. I hope you are now on the lowest dose (0.125 or 0.088mg) and unless things get worse, then it's not a good idea to increase it. If you do have to increase the dose, then it's suggested that it never be increased to more than 0.25 (or 0.18mg).

It's now being recommended in fact, that DAs should not be the first drug of choice for RLS as there are now alternatives that do NOT cause augmentation.

One other thing is that DAs produce dependency. If you ever forget to take it or take it a little too late your symptoms will bounce back. If you ever have to reduce the dose or even stop the drug, e.g. due to adverse side effects (e.g. severe weight gain) or augmentation, then it's very diffcult as withdrawal symptoms can be severe.

One more thing is that I hope that your doctor also discussed with you other things that can be done to help with your RLS. This would have included blood tests for iron deficiency, magnesium, Vitamin B12 and Vitamin D deficiency and possibly thyroid function and diabetes.

Iron deficiency is a major factor in RLS and for some people, correcting this is all the treatment they need.

The other major thing to loook at is if there are any "aggravating factors" making your RLS worse. This could be any one of a whole variety of medicines people take either regularly or occasionally.

What you eat or drink may be making things worse, alcohol and sugar make it worse and if you have any food intolerances eg. gluten sensitivity, then that can be a factor.

In summary, weight gain can be a side effect of pramiopexole. In the longer term it's possible to develop an ICD which can lead to compulsive overeating.

DAs have a high risk of complications of loss of efficacy and augmentation. In that case the drug has to be reduced and/or stopped. This is difficult because if withdrawal effects.

It's best never to exceed more than 025mg. f this fails, then better to switch to an alternative drug.

There are alternatives to DAs which do not cause augmentation or ICD and it might have been better if you'd tried one if these first.

Correcting deficiencies, especially iron can help RLS and so can avoiding aggravating factors.

[RobynW in reply to Hidden]

Hi Manerva thank you so much for your feedback I really appreciate it. It has given me alot of things to think about and questions that I need to ask my doctor. Thank you again

[olgamarie in reply to RobynW]

Manerva thank you so much for the information. I thought COVID had increased my compulsiveness with sweets. If I ate one cookie, I wanted the whole box. I have done everything that has been suggested for inhibiting my RLS. Told years ago by a neurologist, I have one of the worse cases she has seen. I feel that again I am augmenting on my Requip. Do you know if I could slowly decrease my Requip and go on Neupro?There really is no other drug than Requip which allows me to sit at the dinner table, ride in a car, napor sleep. I have tried them all. Thank you in advance for any suggestions. Not to complain, but inform, I have PTSD, depression , anxiety, stabelized lung cancer advancing emphysema, a foot deformed because of "bad" surgery and I am most debilitated by my RLS!

[Hidden in reply to olgamarie]

Just to let you know, I am sorry to hear of all your difficulties and I'll write later with some information you may find helpful.

[Hidden in reply to olgamarie]

Both ropinirole (Requip) and rotigotine (Neupro) are of the same class of medicines i.e. dopamine agonists, (DAs). They both do more or less the same thing in the same way.

One consequence of this is one can be substituted for the other.

In which case there is no reason to decrease the dose of Requip before starting on Neupro, as long as the two doses are equivalent this doesn't make sense.

Reducing the dose of one DA before starting the other would cause unnecessary withdrawal effects.

However, more significantly what's been suggested to you is that you stop taking one DA which can cause augmentation to replace it with another that does the same thing. Any improvement you get from this may be short term before augmentation recurs.

If you experience any of the following then you are suffering augmentation

-

1) Symptoms become more intense

2) they spread from the legs to other parts of the body

3) they happen earlier in the day

4) they happen more quickly after relaxing, sitting, lying down etc.

-

If your neurologist is saying your RLS at the moment is the worst she's seen then that ls probably because you're suffering augmentation which is very severe. If the augmentation is treated properly you can get significant relief.

The surest way of treating augmentation is to stop taking any DA. not ropinirole, not neupro and not pramipexole.

If you've been taking ropinriole for some time then it is possible that be reducing and eventually stopping taking the ropinirole will relieve your augmentation even if your symptoms don't entirely disappear.

However. there are other measures that can be taken to alleviate RLS and if your neurologist hasn't already tried these then they could help.

Firstly. iron deficiency is strongly associated with RLS and RLS can be treated by correcting any deficiency with iron supplementation. In this case, iron supplementation can treat RLS not just relieve symptoms.

It has been found that Brain Iron Deficiency is a factor in RLS and people with RLS have lower levels of iron in the brain than people without RLS. This can be assessed by having blood tests for serum iron, transferrin and ferritin.

Ferritin is the most significant result. It has been shown that raising the ferritin level to at least 100ug/L can relieve symptoms in 50% of people with RLS. It's also been shown that raising ferritin to 200ug/L may raise brain iron levels in people with RLS to the same level as normal people.

In practice if somebody's ferritin is less than 75ug/L it can be raised by taking an oral iron supplement. This can take some time e.g. 3 months or more. More information is available about this if you wish. You do not need either a doctors approval or a prescription to do this.

If somebody's ferritin is over75ug/L it may be necessary to have an IV iron infusion to treat the deficiency. This would require a doctor. An IV infusion can relieve RLS in upo to 60% or people wkith RLS.

Supplements in magnesium, vitamin B12 and vitamin D can also help.

Another thing to check is if there any factors aggravating your RLS, this could include any other medication you're taking or could be something you're eating or drinking. Mkre on this if you wish.

There are also alternative medications to the DAs for RLS. Apologies if you've already tried these .

The alternative first line medications for RLS are the alpha 2 delta ligands (A2Ds) , either gabapentin (Neurontin). gabapentin enacarbil (Horizant) or pregabalin (Lyrica). These can be substituted for ropinirole and this would be better to try than neupro as thhese meds do NOT cause augmentation.

One of these could be started at the same time as still taking ropinirole then ropinirole can be reduced and the A2D increased.

Reducing ropinirole has to be done VERY slowly as reducing and stopping it can cause severe withdrawal symptoms. The slower the ropinrole is reduced the less the withdrawal effects will be. Depending on what dose of ropinirole you're taking it could take many months to stop taking it altogether. You should find that the symptoms of augmentation reduce as the dose reduces.

A further alternative class of medications which can be successful for RLS are opiates. Some people use an opiate to help with withdrawal effects from a DA. Some people replace the DA with an opiate, typically oxycodone, methadone or buprenorphine.

I hope this information gives you some ideas.

Here's some links you may find helpful

dealing with aumentation

sleepreviewmag.com/uncatego...

iron therapy for RLS

sciencedirect.com/science/a...

treating augmentation by gradual weaning off a dopamine agonist

ncbi.nlm.nih.gov/pmc/articl...

an overview of RLS treatment, augmentation and medications

uptodate.com/contents/treat...

[Hidden in reply to RobynW]

In relation to comments made by other members in reply to your post.

There are many people that take Sifrol (pramipexole) or other brands of pramipexole around the world that experience few side effects.

-

There are also some who do suffer side effects but don't think that these effects outweigh the benefits of taking pramipexole and consequently carry on taking it without issue.

-

There are some that even escape from the longer term complications, i.e. loss of efficacy, augmentation and Impulse Control Disorder.

-

Nonetheless these complications are well documented and quite common e.g. 60% of people taking pramipexole suffer augmentation within 8 years and some in less.

-

It's possibly hard for anybody who's never suffered augmentation to appreciate what this means, it's just a word. However, for anybody who's experienced this then it's something that if they'd known, they would want to avoid and would never like to experience again. Some people begin to think of suicide. At least one person in this forum in the last few days alone.

-

If anybody has used pramiopexole for years without side effect and without complication and it still works, this is great and nobody would want to deter them from continuing. On the other hand anybody who has had to increase the dose several times, demonstrates that they are suffering loss of efficacy whether they recognise this or not. Furthermore increasing the dose in response leads to augmentation.

-

For someone who's just starting their treatment for RLS, as the law require, (law of informed consent), both the benefits and risks of taking any medication should be known to enable an informed choice. in addition people should be notified of any alternatives.

This is what I have done, it's up to you to to make up your own mind.

It does matter what people do or don't in regard to potent drugs such as Sifrol. Like any potent drug. Exceeding maximum doses and ignoring precautions against incurring side effects or complications is inadvisable.

There are many companies that manufacture genuine pramipexole tablets i.e. containing pramipexole dihydrochloride The main brand in Australia seems to be Sifrol, in the US it's Mirapex, in the UK it's just pramipexole. They all work.

Unless you buy something illegally that's claimed to be pramipexole, (why would you?) then it's unlikely it's counterfeit.

-

Alcohol does make RLS symptoms worse. It's not the only thing.

It is well documented that the following medicines can make RLS worse

-

SRRI and tricyclic antidepressants. Proton pump and H2 Inhibitors, some anti-nausea medicines e.g. metoclopramide, some blood pressure medicines, beta blockers and anything with a sedating antihistamines.

-

Iron therapy is an alternative treatment for RLS and there are alternative medicines i.e. Alpha 2 delta ligands which don't cause augmentation or an Impulse Control Disorder.

There is nothing here that isn't supported by research, official guidelines and even medicine leaflets themselves.

-

RLS is offcially classed as a neurological "sleep-movement" disorder. (International Classification of Diseases) Quite a lot of information about possible causes of RLS is known.

-

Genetics has a role in primary RLS and there are several known health conditions that can cause secondary RLS.

Iron deficiency, a lack of dopamine receptor sites and excess glutamate are all associated with primary RLS.

[ijsgrandma in reply to Hidden]

Wonderful review. My neurologist didn’t have a clue. After 2 years on Ropinirole I started augmenting. My dr increased the dose in my 3rd yr. I had RLS 24/7 with the meds. I changed doctors and weaned off Ropinirole. It was tough but within weeks my RLS went back to being only in the evening and nights. I had gained a substantial amount of weight and had a compulsion disorder. It wasn’t until I was off of it that I realized how much it had changed my personality. I am not a compulsive shopper but as in Ropinirole and I went to Vegas on a trip once and could stay away from the cash machine. I didn’t want to stop. I was so embarrassed and mad at myself. I didn’t know what was happening to me. Then I read a blog by a guy that lost his house, wife and family to gambling and he attributes it to a dopamine drug. That’s when I knew i made the right choice to get off it. I have tried several other non dopamine drugs and had problems with side effects. I started used CBD and it works 95% of the time. Still have issues with getting to sleep but it’s an improvement over prescription drug side effects and nothing. Anyone choosing to try CBD, you must start with a low dose and slowly increase until you find the amount that works for you. I use 60mg 2 hrs before bed.

[ijsgrandma in reply to ijsgrandma]

Sorry. I meant to say that on Ropinirole I was a compulsive shopper and went to Vegas once.....

Not sure what happened to the middle of it. It got lost. 🤣

[Hidden in reply to ijsgrandma]

Well done for getting off the ropinirole.

I'm glad the CBD works for you. Some people find some CBD products do help with RLS. These are usually full spectrum. These aren't available in the UK, not even illegally as far as I know,

Another thing you might consider is blood tests for iron deficiency. This is a major factor in RLS and I imagine, anybody with RLS will have iron deficiency.

Apparently, IV iron infusion asre a good treatment option for RLS, if you can get one. That's more likely in the US than here

sciencedirect.com/science/a...

[ijsgrandma in reply to Hidden]

I take iron almost daily. My ferritin level was 9 a few years ago. I was sent to a hematologists for an infusion but by the time I had the appt it was up to 44 from iron supplements and he wouldn’t do it. I gave him info in RLS and he said he didn’t believe it! Last time I checked it it was 97. What people need to remember is if they are taking iron supplements they need to take it with vitamin C which helps with absorption.

[Hidden in reply to ijsgrandma]

It's also better to take it every other day, not every day.. When you take it, it causes a release of the hormone hepcidin which prevents any more being absorbed. The hepcidin stays active for 24 hours. So once you've absorbed some iron there's little point taking any more the same day or even the next day.

After 48 hours the hepcidin's gone and you can take the next dose. In fact you can take a double dose.

[ijsgrandma in reply to Hidden]

Thank you. I didn’t know that and obviously none of my drs have.

[BebeMD]

Place a wet and cool towel under your feet

[nugentme]

Hi, Been on Sifrol for many many years. Worked wonders for me but with devastating side effect. Cost me one marriage and maybe costing me another though a well know side effect of hypersexuality not to mention other compulsive behaviours like gambling which I also have a problem with.Last few years my symptoms have been getting worse and I naturally up the dose but without any effect For many years ive wanted to stop taking Sifrol but thought there was no other options. Thankfully I founded this forum and I now know that my worsening systems are most likely being coursed by Sifrol and there are better and safer meds i can take. Currently looking for a good Doctor to help me. Please get of Sifrol as soon as you can.

[Hidden in reply to nugentme]

You didn't mention the gambling before. Impulse Control Disorder (ICD), such as gambling or hypersexuality is another complication of pramipexole.

Withdrawing from pramipexole can relieve the ICD.

However, this is very significant, people who have developed an ICD have to be extra careful when weaning off pramipexole. This is because people with an ICD have a greater risk of suffering DAWS (Dopamine Agonist Withdrawal Syndrome). This can lead to severe mental health problems in some cases, depression, anxiety and suicide. This can last for months.

Not everybody suffers this, but please, be careful.

[nugentme in reply to Hidden]

Thanks for the warning, Surely things can't get any worse. Already on the edge. I've half my dose already, Won't be sleeping tonight I'd say.

[Hidden in reply to nugentme]

If you're saying that you have halved the dose, this is really not a good idea.

It's DANGEROUS!

I really do apologise if anything I've written gives the impression that it is OK to do this, it isn't.

I believe you said you were taking 2mg, you cannot cut that to 1mg withiut serious consequences. Apart from possibly total sleeplessness you may experience very severe withdrawal effects.

In order to avoid withdrawals you must reduce the pramipexole extremely slowly. To reduce from a dose of 2mg will take you well over a year!

-

I really think that tonight you should take the whole 2mg again. The night after if you have tablets of 0.25mg you could reduce the dose to 1.75mg. 24- 48 hurs after that you will have withdrawal effects. I then suggest you carry on taking 1.75mg until symtpoms settle down again or for up to 3-4 weeks. Then you can cut down to 1.5mg for 3-4 weeks and so on.

As the dose gets lower then withdrawal effects can get worse each time you reduce the dose.

When you get down to 1mg I suggest you get some 0,125mg tablets and start cutting down by 0.125mg every 3-4 weeks.. Depedning on hwo this goes. at some point it would be better to cutting the tablets in half and reducing by 0.0625mg every 3-4 weeks, say from 0.5mg downwards.

You should consult your doctor.

DAWS is a risk in your case and cutting the dose suddenly is putting you in danger.

I'm worried for you, please let me know that you have understood this.

[ijsgrandma in reply to Hidden]

I weaned off my Ropinirole in 2 months, but had a doctor helping me. I would advise a dr help and they can give some other non dopamine drugs during the weaning process. I went fro 2MG to 0 in 2 months.

[Hidden in reply to nugentme]

Are you OK?

[ijsgrandma in reply to nugentme]

So sorry! I know it is awful. See my reply above.

[excuseme]

I have been using sifrol for over 15 years. In the beginning 1 pill of 0.088, later 2, now 4 and now and then 5 or 6.

I have no side effects at all and I like it better than alternatives. Above all, never take an imitation or counterfeit Sifrol, it can make things worse.

There is a lot of advice here of do's and don'ts, my experience is that it doesn't matter what you do or don't. The only thing is that drinking alcohol aggravates the rls.

It is a neurological disorder and it is not known what causes it.

[Joolsg]

As you’ve only been on Sifrol for 2 weeks please read Manerva’s reply in detail as he has given you excellent advice.

Dopamine agonists like Sifrol are no longer first line treatment among RLS experts because of the side effects of Impulse Control Disorder and Augmentation. Withdrawal from these drugs is more difficult than withdrawal from heroin and crack cocaine but the majority of doctors are unaware of this.

I wish my doctors had bothered to carry out basic research into RLS before they prescribed dopamine agonists. Blood tests are the first thing that should be done and raising serum ferritin above 100, preferably 300 resolves 50% of RLS.

There is increasing evidence that dopamine agonists permanently damage the brain’s dopamine receptors - so please get your bloods taken and try raising levels if ferritin is below 100.

Also check you’re not taking meds which cause or worsen RLS like sedating anti histamines or anti depressants.

Consider switching to pregabalin or Gabapentin and whatever you do, don’t increase the dose of Sifrol.

[ijsgrandma in reply to Joolsg]

Yes, ferritin level is extremely important but had to get a dr to recognize that.

[Ranjits]

Are you in USA or Uk . Haven’t heard of sifrol I will ask doc .sorry I am in Uk

[RobynW in reply to Ranjits]

I am in Australia

[Hidden in reply to Ranjits]

Sifrol is a brand name for pramipexole which is used in Australia. In the USA the usual brand is called Mirapex.

It's also branded as Mirapexin, Glepark, and Oprymea

Pramipexole is the approved name for the medication found in all these brands.. In the UK NHS doctors are not allowed to prescribe a medication by a specific brand name when a generic version exists. Hence they prescribe "pramipexole".