R l S

[ChewieandAsha]

Hi there ,does having high blood sugar above 16 make your restless legs go crazy cannot sleep my legs just jump .I am on Sifrol .25mg but not working?

[Mariuanna]

Now you mentioned it I think so

[Hidden in reply to Mariuanna]

I think it depends WHY your blood sugar is so high. Can you say?

I imagine it will have an effect on your RLS.

You may also have another problem though. That is the Sifrol.

Will you say how long you've been taking it?

[ChewieandAsha in reply to Hidden]

I have been on the Sifrol for maybe 6 years

[Hidden in reply to ChewieandAsha]

That's probably part of your restless legs problem then.

Apologies if you already know the following. If you don't however this could be really helpful for you.

Sifrol, generic name pramipexole is one of three drugs known as dopamine agonists (DAs) used for RLS. These drugs are now losing their popularity in Europe and the United States.

This is partly because there are now alternatives and partly because of the high risk of MAJOR COMPLICATIONS with them.

These are Impulse Control Disorder (ICD) and Dopaminergic Augmentation.

ICD is not very common and can occur within a short while of starting the drug. It occurs as a compulsion to gamble, shop, overeat or as hypersexuality.

Augmentation is a significant worsening of RLS symptoms. Preceding augmentation there may be a loss of efficacy, when the drug stops working. If the dose is increased, then this can lead to augmentation.

Of the three DAs, pramipexole is the worst for augmentation.

It does sound as if you are least suffering loss of efficacy if not yet full blown augmentation.

Augmentation requires appropriate treatment.

[Hidden in reply to ChewieandAsha]

As regards the blood sugar.

I'm not clear why this is so high.

I'd normally assume this is due to diabetes. However there are other causes.

Even so, if diabetes this level suggests the diabetes is untreated or out of control.

Sugar can worsen RLS symptoms even in those who do not have diabetes. This can have an effect within 24 hours.

In the longer term, excessive dietary sugar, (even in non diabetics) can cause chronic inflammation. This can make RLS worse - long term.

In addition one of the consequences of diabetes is peripheral neuropathy. This is damage to nerves and is irreversible. This makes RLS worse.

It is important to get your blood sugar down, but I guess you know that.

I hope you are aware that drugs are not the only treatment for RLS plus also you should consider, not only what might make it better, but what might be making it worse.

The treatment that deals with the main cause of RLS is iron therapy. Hence you need blood tests for iron deficiency,

Here's information about this

sciencedirect.com/science/a...

Aggravating factors make RLS worse, so avoiding them improves symptoms. The main ones are other medications.

There are other factors, particularly diet and gut health. Anxiety and poor sleep are also aggravating factors.

Managing RLS is not about simply drugs it's about iron therapy and managing other causes and factors affecting it.

Your priority appears to be getting your blood sugar under control.

Then I suggest you look up augmentation then consider weaning off Sifrol. This drug will in time do you more harm than good.

[Eryl]

I've never had cause to measure my blood sugar levels, but as soon as I noticed that ingesting sugary food brought on my rls I started avoiding them. Now I avoid all inflammatory foods.

[Joolsg]

Legs jumping is a clear sign of augmentation on Sifrol.As you've been on it 6 years, it's inevitable.

When I augmented on Ropinirole I couldn't stop my legs ( and arms) jerking and jumping every 10 seconds.

The only solution is to reduce very, very slowly over a minimum of 3 months.

Very tough but possible.

[ChewieandAsha in reply to Joolsg]

Thankyou all for your replies. yes I am dieabetic have tried to decrease Sifrol I am now down to .25 mg daily but as you say it does not seem to be working tonight my reading was off the chart over 30 but is now down to 25 after dinner .What should I be taking instead?

[Joolsg in reply to ChewieandAsha]

Once off dopamine agonists, the alternative medications are usually Gabapentin or pregabalin or a low dose opioid.

You may need an opioid and cannabis to deal with the withdrawal symptoms. Also ask GP for blood tests and ensure serum ferritin is above 100.

I don’t know anything about diabetes so check with your GP.

[ChewieandAsha in reply to Joolsg]

Thanks Joolsg Cannot see me getting any opoid my doctor will not even give me Codiene.

[Joolsg in reply to ChewieandAsha]

I see you're in Australia. Shumbah is campaigning in Oz to get low dose opioids for those who've beenon DAs.Send her a message and she'll be able to help by giving you useful contacts for doctors who are familiar with RLS and are knowledgeable about low dose opioids.

There's also the opioid study by Dr. Winkelman, a world RLS expert, showing low dose opioids are safe and highly effective for refractory RLS ( unless there's a history of abuse).

Shumbah's health improved so much on Buprenorphine that she was able to sleep and her blood pressure came down so she was able to stop a lot of other meds.

Here's a link to the opioid study. Print it off and show to your doctor.

massgeneral.org/rls-registry

[Hidden in reply to ChewieandAsha]

If you are reducing the Sifrol, be aware that each time you reduce it, then you will be experiencing withdrawal effects, i.e. a temporary worsening of symptoms. That's why it's important to reduce it slowly in small steps.

I'm not clear what the "readings" of 30 and 25 are. Are these your blood sugar levels? Are they in mmol/L?

If so, these are way too high.

[Ducatidave]

Hi. Don’t know what your salt intake is but reduce this to ‘zero’ … i know impossible but reduce as much as you can.