Prescibed Pramipexole for RLS - nausea and vomiting side effects

[NotSleeping247]

Hi / looking for some advice regarding side effects of Pramipexole. Was prescribed this medication last Friday for what I thought was RLS - started 9 months ago after a 3 month hospital admission where I was bed ridden for 8 weeks and had significant muscle wastage. Also had burning sensation in both calves and intense tingling in hands then shooting pain up to elbow in one arm. Had blood tests in July and iron and thyroid all normal and ruled out as underlying causes. At GP appointment last Friday I stated that my symptoms were 24 hours a day - not just evening. I’m on dihydrocodeine for chronic joint and muscle pain which takes edge off the RLS symptoms but I can’t take these after 3ish as give me insomnia. Took the Pramipexole as prescribed for first time last Saturday- felt some relief from symptoms but then nausea and spent most of night vomiting. Also had headache all night. Next night took some anti sickness medication I’m prescribed an hour before Pramipexole - didn’t vomit but still nausea and headache all night. Haven’t taken the Pramipexole since Sunday - looking for advice if I should not take any more of it and go back to GP? Thanks 🙏

[SueJohnson]

NO - don't take pramipexole. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. Does this sound like what you have? It doesn't from what you said. Even if it is RLS, you don't want to take pramipexole. It used to be the first line treatment fr RLS but no longer is because up to 70% of people on it will suffer from augmentation which believe me you don't want. Gabapentin is now the first line treatment. I could tell you more, but as mentioned I don't think you have RLS. If you do meet the criteria let me know.

[NotSleeping247 in reply to SueJohnson]

Thanks Sue

[Amrob in reply to SueJohnson]

Alpha delta ligands are first line treatment. This includes gabapentin AND pregabalin.

[SueJohnson in reply to Amrob]

Obviously I know that and I replied to you before on this.

[QueenCody in reply to SueJohnson]

Hi Sue - I had another appointment with my usual GP - he advised best course of action was blood tests to check iron levels - in mean time he prescribed iron fumarate tablets 32mg 2 - 3 times a day and gabapentin on a starting dose of 100mg 2 - 3 times a day as required. I started the gabapentin last Saturday 100mg at 2pm which is when I usually finish work and start resting (and the RLS symptoms start). I took another 100mg at 5pm and another at 9pm. This dose made a slight difference - I continued on this dose for 3 days to see if would take more effect. This didn't happen so I increased dose to 200 mg at same times. This did reduce symptoms more but not enough so I could sleep. So looking for advise on if I can safely increase until I find most suitable dose? Or should I seek advise from pharmacist or GP? The only side effect I'm having from the gabapentin is slight drowsiness which is far easier to tolerate than the effects from the pramipexole. Thanks again for all your advice!,

[SueJohnson in reply to QueenCody]

Gabapentin takes 3 weeks to be fully effective although 300 mg is the usual starting dose so I would increase your night time dose to that but then wait for 3 weeks before increasing more. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. According to the Mayo Clinic Updated Algorithm on RLS which you should read if you haven't "the usual effective dose is 1200 to 1800 mg." On the iron, don't take it more than once every 24 hours as it won't be any more effective than taking it once a day. You might want to take 2 of the tablets. Take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and better at night. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[NotSleeping247 in reply to SueJohnson]

Thanks Sue - your advice has been invaluable and much appreciated 👍🏻

[Joolsg]

Your GP isn't up to date on RLS treatment. It's actually a good thing that Pramipexole made you ill as it is no longer first line treatment for VERY good reasons. It causes Impulse Control Disorder and Augmentation ( severe increase in disease) at a very high rate. Your GP shouldn't still be prescribing it.

First, look at the diagnostic criteria. Are you sure it's RLS? Do you have an overwhelming urge to move and are the sensations relieved by movement. If the sensations are still there when you walk about it probably isn't RLS. Is it worse in the evening or when at rest? Does it stop you falling asleep? If not, it's something else. Possibly nerve damage, neuropathy or dystonia. Ask for a referral to a neurologist.

RLS isn't taught in the UK and the NHS and NICE CKS guidelines are already out dated. It's therefore vital you self educate.

The best resource is the Mayo Clinic Algorithm.

If it is RLS, The first thing your GP should have done is ordered a fasting full panel blood test as low brain iron is the main cause of RLS. Increase brain iron by raising serum ferritin above 100, preferably 200 and 60% see a dramatic improvement. Saying your results are 'normal' is common but meaningless. Serum iron has to be sbove 60 and serum ferritin above 100 for people with RLS. the posts below with videos by Dr Garcia Borreguero one of the world experts.

Then the GP should have asked for all medicines you're taking as there us a long list that trigger or worsen RLS. Anti depressants, anti histamines, statins and beta blockers are the main culprits.

Visit RLS UK website and look at the diagnostic criteria and augmentation pages.

In the meantime look carefully at the diagnostic criteria as I'm not sure what you describe is RLS. Tingling in the arms and hands sounds more like nerve damage /neuropathy.

[QueenCody in reply to Joolsg]

Thanks for replying - I had RLS about 3 years ago - symptoms were “textbook” and underlying cause was diagnosed as anaemia and was resolved with course of iron treatment. When symptoms started this year they were so familiar that even with the disparities I believed it to be RLS. As symptoms were initially mild and infrequent I was able to self care with warm baths, hot compresses etc. Currently I describe the symptoms in my calves as (and I’m paraphrasing here) as like a tightly wound up toy which is unable to rewind - nowhere for all that energy to go - it’s intense and incredibly unpleasant and it is only relieved by walking around. The GP I saw was a trainee but did appear to be familiar with the common symptoms and causes. However she said she’d have to discuss with a colleague and ring me later on (as nonone was immediately available). I didn’t get a call - still haven’t - only knew I’d been prescribed medication as I saw it on the GP app. I definitely won’t take any more of the medication and think a return visit to a GP might be might be best course of action! Thanks again!!

[Joolsg in reply to QueenCody]

That does sound like RLS!

You sound like someone for whom iron therapy will work. Don't take dopamine agonists! Get your serum ferritin above 100,preferably 200 by taking ferrous bisglycinate 75mg every other night on an empty stomach. It takes longer than by IV infusion.

If symptoms give you issues in the meantime you could ask the GP for codeine 30mg at night and as soon as your iron levels and ferritin increases, you can reduce the codeine.

[QueenCody in reply to Joolsg]

Hi - I had blood tests done in July and my serum ferritin was 35.0 ug/l - not sure if that’s above 100 or 200? Same time last year they were 7.0 ug/l which seems significantly less!! Thanks again for taking the time to reply

[Joolsg in reply to QueenCody]

35 ug/l is way too low for RLS. 100 ug/l or 200 is what you need so you can safely start taking oral supplements.

Amazon sell Gentle Iron ( ferrous bisglycinate) and take every other night on an empty stomach as it raises levels more quickly by fooling Hepcedin, a chemical which blocks iron absorption. Some people advise taking it with vit C but recent studies have stated that's not necessary.

Quite a few people see an improvement as soon as they start taking ferrous bisglycinate, for others it takes months.

[QueenCody in reply to Joolsg]

Thanks - I’m going to take your advice 🙂

[Believer1234 in reply to Joolsg]

My iron results are:

Serum iron level 21.8 umol/L [6.6 - 26.0]

Serum transferrin level 2.55 g/L [2.0 - 3.6]

Transferrin saturation index 38 % [15.0 - 50.0]

Serum ferritin level 81 ng/mL

Would you suggest that I take Iron supplements?

Thank you!

[Joolsg in reply to Believer1234]

The Mayo algorithm now puts iron treatment first before medication.

Serum iron should be above 60 and serum ferritin above 100, preferably 200 for RLS.

I attach links.

Studies have shown that taking iron supplements every other night raises levels more quickly than every night by fooling hepcedin.

If I were you, I would be taking ferrous bisglycinate every other night.

One member on here needs iron infusions to keep serum ferritin above 300 and only then does her RLS settle.

mayoclinicproceedings.org/a...

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

pubmed.ncbi.nlm.nih.gov/314...

[Believer1234 in reply to Joolsg]

Thanks so much. I've looked at Amazon for their gentle iron and they have a product which is 14mg. How many tablets would you recommend taking and does it have to be at night as I note that you stated that it should be taken on an empty stomach but this is difficult to do as I eat my dinner quite late?? Thank you 😀😀

amazon.co.uk/Iron-Tablets-1...

[Joolsg in reply to Believer1234]

I take Solgar ferrous bisglycinate and it comes in 25mg capsules. When raising levels I used to take 2 tablets. So an average of 50mg ferrous bisglycinate every other night should be fine.

With RLS it's best to take iron supplements last thing at night just before bed as RLS mainly hits at night when dopamine levels drop.

Take it a few hours after your last meal.

It took me around a year to raise my ferritin from 65 to 145.

However, not everyone responds to supplements or iron infusions and that is the mystery the experts are trying to understand.

The majority see dramatic improvement in RLS by raising serum ferritin levels so the odds are in your favour.

[Believer1234 in reply to Joolsg]

Thank you so much 😊

[SueJohnson in reply to Believer1234]

Don't take tumeric as it interferes with the absorption of iron. Have a new test in 3 months. Improving your ferritin to 100 or more helps 60% of people with RLS. Take it with 100 mg of Vitamin C or some orange juice.

[Believer1234 in reply to SueJohnson]

Thank you 😊

[SueJohnson in reply to Believer1234]

2 hours after your last meal and coffee would work.

[Munroist]

I fully agree with the recommendations from Sue and Joolsg, iron is simplest route to go espeyas it helped in the past. Although more than a few people report RLS as pain rather than the urge to move, I can’t help thinking that I might be an element of nerve issue in your symptoms and maybe your sympathetic nervous system is overexcited and “over reporting” on what it feels. I had a back issue a while ago and some of the nerve related symptoms were tingling, amplified feelings of pain or discomfort and excessive cramping, even now I have to be careful how I stretch because if the muscle goes too far is can spasm very easily. It was also when my RLS went up a step. Sometimes muscles just being tired felt painful. If you’ve had muscle wastage then you also may have reduced your exercise which means your nerves will get less chance to readjust and calm down. A significant number of people report RLS symptoms increasing after operations - not sure what your hospital admission was. Lastly there is a loose link between neuropathy and RLS where people with nerve issues have a higher likelihood of RLS. What to do .. consider careful exercise and stretching to mobilise muscles and remind the body what normal is like, moderate exercise such as an hours walking a day is good for RLS anyway, think about techniques such as meditation, relaxation or CBT. Over time your body and nerves can readjust.

[Typicallygaslit]

Hi you sound a bit like me. I too reacted violently to propinirole and now I’m almost glad I did. But it also means I’m especially sensitive to both dopamine and serotonin agonists as they appear to be co-dependent. I also don’t tolerate iron bisglycinate which is what most people recommend. The reason is that it’s made with glycine and it stimulates serotonin. I have a serious problem with glycine and I don’t think I’m alone even though it’s perhaps not so common. So my recommendation would be to try it but if it gives you side effects, e.g. diarrhoea, then try iron fumarate or something else. Despite having IBS, I tolerate fumarate very well. I know I have a gene that makes it difficult for me to metabolise iron so I’m hoping the supplement will be enough (as you can’t get IV that easily in the UK).

[QueenCody]

Thanks for everyone's advice. I've ordered some gentle iron and requested another GP appointment where I will discuss serum ferritin level.

[Truthsword]

Get off it! THAT'S your body saying "STOP". TRY diet and exercise.