Why are my hands tingling? - Restless Legs Syn...

Restless Legs Syndrome

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Why are my hands tingling?

Sweeneytodd profile image
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I have been taking pramipexole for 6years (0.18 mg). I'm finding recently that I need an extra dose (I think this is due to my shift work) . After speaking with my GP he gave me 0.088 mg to take as and when. I have been taking half maybe twice a week, so not much! However I am finding that quite often both my hands are tingling. Any ideas?

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Sweeneytodd
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Hello and welcome to this forum, I can see that this is your first post.

Sorry to hear you're having problems with pramipexole.

As regards the tingling in the hands, I cannot say with 100% certainty whether this is anything to do with the pramipexole ir not. It isn't listed as a side effect of pramipexole, I never experienced this myself when taking it for 9 years. Nor have I read other members of the forum saying they've experienced it as a side effect of pramipexole.

I'm afraid that there is another problem which you may be starting to experience with pramipexole.

There is a risk of 3 main longer term complications of using a dopamine agonist (DA) for RLS. The DAs used are pramipexole, ropinirole and rotigotine. Pramipexole is the worst risk.

I am assuming that you may not be aware of these complications. Doctors commonly neglect to tell you them.

The first is loss of efficacy and it appears you are already experiencing this. It's not working so well.

It would seem logical in this case to increase the dose. Counterintuitvely, this is NOT recommended.

The reason for NOT increasing the dose is that loss of efficacy is the precursor to the next, very significant long term complication i.e. augmentation. This is where the effect of the drug practically reverses. Instead of relieving symptoms it can start to make them worse. Eventually much worse.

The higher the dose of a DA anyone takes and the longer the time they take it both increase the risk of augmentation. After taking pramipexole for 6 years your risk of augmentation is approaching 60%.

Some doctors also advise switching from one DA to another, this serves no purpose, ALL DAs cause augmentation.

Although the official maximum recommended dose for RLS (in the UK) is still 0.54mg, the UK guidelines also state that the dose should be kept low to avoid augmentation. It's becoming accepted now that the dose should not be increased above 0.18mg.

Additionally, taking the extra 0.088mg "as necessary" is also probably not a good idea. Not only are you increasing the dose on any day you take it, you are reducing the dose on a day you don't take it. Withdrawal effects from reducing a dose of pramipexole can occur within 24 - 48 hours and mainly consist of worsening of the symptoms. By doing this, you may be putting your self on a RLS roller coaster.

The Offcial UK national guidelines for the management of RLS identify alternative medicines to DAs for RLS, these are either gabapentin or pregabalin. These do NOT cause augmentation.

I would suggest then, at least i the short term, that you do not take the extra 0.088mg and take the same 0.18mg every day. In addition you could ask your doctor to prescribe gabapentin.

The two medications, in combination, can be effective. Gabapentin does not start to work effectively for a few weeks, so you have to give it a chance. The starting dose is 300mg (for RLS once a day). It can be increased in steps of as fast as 100mg every day or as fast as 300mg every 3 days.

Thereafter, if symptoms continue to get worse, then although it appears illogical the next step would be to reduce and possibly stop taking the DA.

Be aware that gabapentin has side effects, similar in some respects to pramipexole. These effects may fade after a few weeks. The initial effects are drowsiness, dizziness and stumbling when walking. Slghtly blurred vision can also occur.

Because of this, gabapetin for RLS is best taken as a single dose 2 - 3 hours before bedtime.

Presuming you live in the the UK you can see the national guidelines for doctors for the management of RLS. It would be unwise for a UK NHS doctor to ignore these. You can refer your doctor to them.

Here's a link to the guidelines. Note the web site is not accessible from outside the UK.

cks.nice.org.uk/restless-le...

Furthermore even if someone is taking medication for RLS, this does not mean that the non-pharmacological measures for reducing symptoms should be neglected.

The main factor associated with RLS is Brain Iron Deficiency (BID). BID occur in the absence of iron deficiency anaemia. The presence of BID can be indicated by a blood test for "ferritin". A normal level of ferritin is anything above 15 ug/L. Some doctors may be aware that if it's below 50ug/L then an oral iron supplment should be tried to increase the ferritin level. For somebody with RLS, however, 50% of sufferers will get symptom relief from rasing ferritin to at least 100ug/L.

Additionally, RLS sufferers who have deficiencies in magnesium, vitamin B12 or vitamin D can benefit from taking supplments in these. You can also have blood tests for these.

I'm assuming that your doctor has tested you for anaemia, iron deficiency anaemia can worsen RLS and could cause tingling in the extremities, e.g. hands. Vitamin B deficiency , expecially B12, can also cause tingling.

A further issue in your case may be that there are various "aggravating factors" which can make RLS worse and these should be avoided.

There are quite a few meedicnes which make RKLS worse, so if you are taking anybother medicines, if you say what these are, I can say if they;re making your RLS worse.

Alcohol, caffeine and refined sugar should be avoided.

I aslo assume that your doctior has eleiminetd the possibility of you having diabetes, thyroid problems or kidney problems, as these can affect RLS.

In answer to your original query, I'd say it';s unlikely that your tingling hands is directly realted to the pramipexole. It may be coincidental.

Tingling is usually either a nerve problem or a circulation problem. There are quite a few possibilties. If you have any other symptoms you can identify it may help indicate what this might be e.g. pain, numbness, weakness, coldness or pale skin. Plus, arthritis or neck pain.

Sweeneytodd profile image
Sweeneytodd in reply to

Thank you very much, that is the most information I have been given. I have always suffered with anemia and poor circulation and my GP did say he wants me to have some blood tests. I will take your advice re the gabapenten and not taking the extra dose of pramipexole. Thank you again I do appreciate your help

in reply to Sweeneytodd

The anaemia is possibly a significant factor in your RLS. If you persistently suffer anaemia then even when it's OK you may still have BID, in fact are more likely because of the anaemia.

If you suffer anaemia a lot, the cause of it should be investigated.

The tingling is probably related to the anaemia. If there's not enough iron in your blood, it can't carry oxygen properly and your nerves may be getting oxygen starvation. There could be cumulative peripheral nerve damage. This could cause tingling.

Sweeneytodd profile image
Sweeneytodd in reply to

I will be getting in touch with my GP on Monday thank you again

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