Advice pramipexole

[landdebbie]

My GP has reluctantly put me on Pramipexole after reading the side affects I understand why.I haven't started to take them yet , was wondering if I should rather wait till I've seen the neurologist before going down that route.It sound like an awful medication as it was only to help till I saw the neurologist ,I'm thinking I should just wait. Any suggestions to manage it be helpful. Any books that would help on understanding this more would also be helpful. I'm luckier than some I've read on this forum as mine isn't that bad yet. Although it does keep me awake some days are worse than others but still manageable at the moment.

[Ozzy2021]

I would hold off if you can. My GP put me on them and to start they worked so well but my RLS got progressively worse in quite a short space of time. I was only taking them for a few months, but coming off them was terrible. Wish I had never tried them.

[landdebbie in reply to Ozzy2021]

Ozzy thank you for that , from reading all the posts it sounds like sound advice.I prefer not to take unnecessary medication if I can.

[Hidden]

Hello

I see you're waiting to see a neurologist as your doctor isn't sure you have RLS because you only have it in the evening.

This is a little ignorant of your GP since it only occurring in the evening or at night is one of the RLS diagnostic criteria.

Here's a link to the accepted RLS diagnostic criteria. If your symptoms match all the criteria then you most probably do have RLS.

irlssg.org/diagnostic-criteria

I see also that you've had several blood tests, but don't say what they were or what the results were.

Of particular importance is a blood test for ferritin. I suggest if you don't already know you find out if you were tested for ferritin and what the exact result was. If you haven't had a test for this then I suggest you request one.

Being told that your ferritin level is "normal" or "OK" is not useful information. It only means it is at least 12ug/L.

However for somebody with RLS ideally it needs to be at5 least 200ug/L and even if it is at least 100ug/L some sufferers benefit.

The rule is that if your ferritin is less than 75ug/L you should initially start to take an oral iron supplement with the aim of raising your ferritin to at least 100ug/L.

Iron deficiency is a major causative factor in RLS and iron therapy can treat it to such an extent in some people that they don't need any medication.

You could refer your GP to this link.

sciencedirect.com/science/a...

Less signficantly if you have any deficiency in vitamin B12 or vitamin D then supplements in these might help.

Another factor in RLS is that there are many aggravating factors, things that make it worse.

Some of these are dietary particularly alcohol, caffeine and sugar. Sugar in drinks, cakes, biscuits etc can all trigger symptoms.

A signficant aggravating factor is other medications. There are many medications that make RLS worse. These are mainly antidepressants and sedating antihistamines.

I note that you mention taking medicine for stomach problems. These too can aggravate RLS or even cause it. Especially if you're taking either a proton pump inhibitor or a H2 inhibitor.

It is possible that by dealing with the above may mean you won't need medication, but it could take some time to do this - months perhaps.

When it comes to medications.

You mention trying gabapentin and - no luck.

By this I assume you mean it didn't work. If this was the case then it's worth looking at why this may have been.

One reason is that it's just not going to work for you.

However it could be that you didn't take a sufficient dose and you didn't take it for long enough. Gabapentin needs to be taken at least 3 - 4 weeks at a sufficient dose before you can really be sure it's not working. A sufficient dose may be at least 900mg taken only in the evening.

Gabapentin does have a lot of side effects and so does pramioexole.

The problem with pramipexole however is not the side effects but th risk of two major complications. These are Impulse Control Disorder (ICD) and Dopaminergic Augmentation.

The risk of ICD is small, but the risk of augmentation is significantly high. If you suffer either of these you would have to withdraw from it. This isn't easy, some people find it impossible. It does cause dependency, but I wouldn't say it was addictive as such.

Although dopamine agonists such as pramipexole are still recommended in the UK alongside gabapentin, more globally it is recommended that gabapentin be the first treatment and pramipexole avoided because of the risk of augmentation.

Here's a link

pubmed.ncbi.nlm.nih.gov/274...

The link below is to the National Institute of Health and Care Excellence (NICE) Clinical Knowledge Summary (CKS) for restless legs.

If you weren't aware NICE is a government funded national health organisation that publishes these CKS's designed to offer guidance to GPs. NICE also publshes prescribing guidelines. The CKS is quite a comprehensive source of information about RLS but is also an authority which GPs cannot dispute or ignore.

I suggest you familiarise yourself with the site and you can refer your GP to it if necessary.

cks.nice.org.uk/topics/rest...

[landdebbie in reply to Hidden]

Hi Manerva my GP has given me a pamphlet about RLS and I did mention the ferrtin levels but as he said he's the first contact and as the medication we've tried hasn't worked he's referring me to make sure it's definitely not something else even though I do have all the symptoms, as all my blood tests for iron have come back normal. I was on Gabpentin for a month but if anything it just got worse.My GP tries to find a cause before prescribing medication as her knows I prefer not to take any of I can avoid it. As all the medication I was on I've stopped taking as it wasn't working ,I was on amitriptyline for a couple years .Also cause I've had mental health issues in the past I don't want to take anything that might lead back to that, which is why my GP has tried not to prescribe pramipexole and this is a last resort.He did inform me of what can happen but said I should read the side affects .So I think after reading them I would rather not t take them. As my GP recommended this website as he said people have more information concerning RSL and it might need more helpful.

[Hidden in reply to landdebbie]

It's good that he has referred you as he has recognised he has little expertise in RLS.

However, I hope I'm wrong in your case but even many neurologists have little expertise in RLS, so it's still worth finding out as much as you can for yourself.

The diagnosis of RLS is not based on any test. There is no feasible test for it. It's based on family and personal medical history a neurological examination and on the diagnostic criteria.

The only criteria then, that a neurologist may possibly be a little more helpful with is the fifth criteria. Which is -

"The occurrence of the above features are not solely accounted for as symptoms primary to another medical or a behavioral condition (e.g., myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort, habitual foot tapping). "

There are also other conditions that might underly RLS such as diabetes, thyriod dysfunction and peripheral neuropathy.

You will see however that most of these are not neurological.

I'm afraid your GP has commited the classic mistake about your blood tests i.e. that all your "blood tests for iron have come back normal."

As I wrote before this is not helpful. You need to know if ferritin was included and you need to know the result. 12ug/L of ferritin is "normal". If you have RLS it needs to be at least 100ug/L.

Amitriptyline is known to make RLS worse.

One thing I didn't previously didn't mention you might discuss with your GP is taking some "test" doses of pramipexole.

It's usually very effective and effective immediately in most cases, so if you took 2 or 3 doses and it worked this would seem to confirm the RLS diagnosis. If it didn't work, it might cast doubt on the diagnosis.

If it does work then it's still not a good idea to take pramipexole. This is primarily becasue of the major complications that dopamine agonists, all of them, can cause. The main risk is of dopaminergic augmentation and I imagine your GP never mentioned this. I guess your GP may never have even heard of it, many haven't and it isn't mentioned in the UK prescribing guidelines.

If you do end up taking a dopamine agonist, pramipexole is the worst, it would be better to take ropinirole and better still rotigotine. The additional problem with rotigotine is that although it gives the least risk of augmentation, it's a patch and can cause a skin reaction.

Another option is to take 2 or 3 doses of a sedating antihistamine. If this were to make your symptoms worse tben this might also confirm the diagnosis.

You would need to discuss these with your GP though.

I do hope the neurologist is helpful. I think you'll find that most RLS sufferers would confirm that you need to know as much about RLS for yourself.

I have seen 3 in the past and none of them were much help, the first caused me more harm than good.

In the meantime I still suggest you refer your GP to the NICE CKS as this might enable them to deal more effectively with any future patient they get with RLS.

Heres the link again.

cks.nice.org.uk/topics/rest...

[landdebbie in reply to Hidden]

Thank you Manerva ,yes he did say he doesn't know to much about RSL so I'm presuming he's going into the NHS link and prescribing the recommended medications.We tried repinirole and that didn't work either. This is the first GP that had actually listened to me. I will discuss it with him.He was pleased if joined the forum as it would help us both understand how to deal with this best.

[Hidden in reply to landdebbie]

Hi

I'm glad you have a GP who appears to be reasonable.

If you already tried ropinirole then you've already tried the dopamine agonists "test". So now "trying" pramipexole would seem to serve no purpose.

It appears then, that you may not have RLS as your GP suspects. I hope the neurologist can find a solution for you.

[landdebbie in reply to Hidden]

Hi thank you maybe you right .

[Joolsg]

Personally I would wait. After 16 years on a similar drug (Ropinirole) Augmentation was horrendous & the withdrawal nearly killed me. I firmly believe all those years on DAs have permanently damaged my dopamine receptors so other drugs don’t work as well.

Long term use of anti depressants can have the same effect so the years in amitriptyline may be the reason Gabapentin didn’t help- it didn’t help me either.

Raising your serum ferritin above 250 may really make a difference so while you’re waiting for the neurologist appointment, take ferrous bisglycinate every other night.

[landdebbie]

Joolsg thank you seems like everyone has had an awful experience that medication.I will try some of theferrous bisglycinate and see if it helps.

[Josana13]

I wish I was where you are right now. I wish I had never taken the nightmare drug. There are other ways and you can find them here on this site. One thing I do is tie an Ace bandage around my legs. You'll know how tight. I sleep with the Ace Bandages on. This has helped me the most. Iron is also important. This site has some wonderful people who have been so helpful to me. Keep on educating yourself. Lots of luck and many blessings to you.

[landdebbie]

Thank you Josana yes this site has been very helpful, I'm definitely going to try an alternative method.If I can avoid chemicals in my body I will.