Post pramipexole : Hi I have been off... - Restless Legs Syn...

Restless Legs Syndrome

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Post pramipexole

Hoochybaby profile image
32 Replies

Hi I have been off pramipexole now for over a month and it took some doing.

At the moment I'm not taking any drugs at all and up to now I have coped reasonably ok. But now the rls has crept back and starting earlier in the day. After reading some posts on this forum I decided to buy some natural remedies. I purchased magnesium tablets 150mg, gentle iron 20mg and vitamins B12. As yet I haven't taken any and it occurred to me that these medicines may interact with my prescription for arterial fibrillation. I take Apixiban and a beta blocker. Does anyone know it thus will be a problem? I am 80 years old and don't want to make matters worse

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Hoochybaby
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32 Replies
Lapsedrunner profile image
Lapsedrunner

Worth having a chat with a pharmacist?

Hoochybaby profile image
Hoochybaby in reply to Lapsedrunner

Yes thank you

You have done really well!

It was however a little bit inevitable that your RLS would return, sorry.

Yes it's worth having a chat with a pharmacist.

It does NOT look as if magnesium interferes with Apixiban.

Magnesium taken in conjunction with a beta blocker can lower your blood pressure.

Vitamin B12 iand iron shouldn't interfere with either of your other medicines.

It may be another factor, you might explore replacing the beta blocker with something else.

Beta blockers can make RLS worse.

WideBody profile image
WideBody in reply to

I was actually prescribed Metropolol FOR my RLS (in the beginning). It was one of the only drugs that helped (back then). I don't take metropolol now, but back then it did help (only a little)

in reply to WideBody

I was once prescribed propranolol, but it was to stop

the shaking attacks I had due to acute anxiety. I was also prescribed an SSRI antidepressant. It was not long after that my mild RLS became severe.

Omegadcuj profile image
Omegadcuj in reply to

It was I believe due to the 15 years on sertraline (another ssri I think? ) that when I stopped i developed rls. :(. I'm sure there's a link!

in reply to Omegadcuj

The known link between SSRI antidepressants such as Sertraline and RLS is that they can exacerbate or even possibly cause RLS. My RLS started getting worse whilst I was taking a SSRI. I was then switched to Mirtazepine, which can also exacerbate RLS.

So when I wrote my RLS got worse "after" taking the SSRI, I should have said after "starting" it. Sorry.

Stopping an SSRI does not make RLS worse. Stopping should make it better.

Omegadcuj profile image
Omegadcuj in reply to

A lot I'd things changed I lost 3st stopped taking omeprazole and stopped sertraline. Then rls started. Wierd I know :)

in reply to Omegadcuj

You seem to be wired up backwards! How awful.

If you stopped the omeprazole recently you may still be iron or B12 deficient.

Have you had these checked?

What do you think caused the weight loss?

Omegadcuj profile image
Omegadcuj in reply to

It's over a year now. I've been putting up with rls for some time now without realising what it was. Thought it was the walking just before bed at night ; to some degree it was :( My iron ferritin b12 have all been checked by my doctor and are fine (unless they are REALLY incometent lol).

Weight loss was over 1 year and I just stopped fast food and ate more healthily, cooked my own etc. Changed my attitude to food basically :) worked wonders :). Or did it exasperate the RLS? who knows? Lol

WideBody profile image
WideBody in reply to Omegadcuj

I vote for incompetence, did you get the results of your iron tests? Did you know since you have RLS, you need to do a morning fasted full iron panel, not just Ferritin? Most experts recommend a Ferritin level above 100. My was 30 and the doctor said it was normal, albeit low.

About 50 percent of RLS sufferers respond to iron supplementation. Even if your Ferritin was "normal", what was the value and more importantly what was your Transferrin Saturation Percentage?

Omegadcuj profile image
Omegadcuj in reply to WideBody

They did not give me details in afraid. I had all on to get the actual value out of them! Nobody asked me to fast so that's interesting. When I see the neurologist I will mention all this, no point with doctors they're obviously not interested! :(

in reply to Omegadcuj

Widebody is correct.

Although, there is difference between ignorant and incompetent.

Well done on losing weight. I doubt it's a factor in your RLS

Omegadcuj profile image
Omegadcuj in reply to

I am just in the process of writing a concerns letter to my practice manager but I doubt it will impact anything :/.

in reply to Omegadcuj

Thank you for doing this. You are helping protect other people.

The doctor that advised you to stop the pramipexole cold turkey needs to be made aware of their potentially dangerous ignorance.

They also need to be be made aware of their ignorance of the alternative use of an alpha 2 delta ligand for RLS

I suggest you include references to the NICE BNF warning about sudden cessation and the warning in the patient information leafllet.

Here's a link

bnf.nice.org.uk/drug/pramip...

You can also refer to the NICE guidelines on the management of RLS which refer to gabapentin or pregabalin being used for RLS.

Here's a link to these

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

You can include the web page addresses in your letter

Omegadcuj profile image
Omegadcuj in reply to

Thanks I will include these too

Hoochybaby profile image
Hoochybaby in reply to

Thanks for the reply Manerva. I have heard from other people that beta blockers can cause rls and funnily enough thinking back the rls did start around the time I was put on to a beta blocker about 10 years ago for SVT ( super ventricular tachycardia) but I was always told that I was not to stop taking it. I have not had a repeat of svt since so I suppose I will have to stick with it.

At the moment I am just about managing my rls but it’s a struggle

funnyfennel profile image
funnyfennel in reply to Hoochybaby

Hi H, Why did you stop the prami? Was the dose too high or did you have side effects. I know that its not perfect, but for me it gives relief from my RLS, not a full nights sleep however.

Beas of luck.

Hoochybaby profile image
Hoochybaby in reply to funnyfennel

I suffered from augmentation in the beginning a small dose of pramipexole relieved my rls but gradually it was increased when it stopped working and I finished on a very high dosage and augmentation then kicked in and coming off the drug was v hard

funnyfennel profile image
funnyfennel in reply to Hoochybaby

Understand....I take the lowest dose, but two spaced out in the evening with a painkiller as well.

My first medication after diagnosis with RLS was Ropinerole and the doctor allowed me to increase the dose to 4mgs. I was a zombie and lost my normal life, but because I had relief from the RLS and could sleep, I continued, until I found this site and shared my woes and got advice. Good luck to you x

Marvene1942 profile image
Marvene1942 in reply to funnyfennel

I was taking morphine for my RSL. It stopped the RSL but I can’t take the morphine. It makes me dizzy and sick. Right now I am on a low dose of Prampexole and low dose of gabapentin seems to stop the RSL. I am seeing a Neurologist next week. I hope he can help me without taking a opiate. I have been prescribed Methodone and oxycodon and they all made me sick. I wish they could find something that is not a opiate. I also had terrible augmentation. With Prampexole.

Heatherlss profile image
Heatherlss in reply to Marvene1942

Your doctor is Dr B isn't it ? He put you back on pramipex ?

Marvene1942 profile image
Marvene1942 in reply to Heatherlss

Yes my Dr is Dr B he put me on 0.25 one a day in pm for one week and then 7 and 1/2 for two days. I can’t do it because the Morphine makes me dizzy and when I start the Prampexole the first couple days is terrible. He also put me on Gabapentin 100 mg. I have never felt right since I first went to him. I just can’t take opiates.

in reply to Hoochybaby

Perhaps, if you think it worth it, you might consider reviewing the beta blocker with your doctor. It isn't routinely used for SVT, but also you mentioned arterial fibrillation, by which I think you meant a t r i a l fibrillation which again can be a rapid heartbeat,but which is far more serious. Apixiban is prescribed for that.

It might be worth clarifying which of these you have, SVT or AF, one, the other or both

Hoochybaby profile image
Hoochybaby in reply to

Hi spoke to a pharmacist today re supplements he advised not to take magnesium eith apixiban but vitamin B12 and iron are ok

in reply to Hoochybaby

That's good to find out,

Thanks for letting me know.

Henshaw241241 profile image
Henshaw241241

Hi yes I was on pramipexole for a long time then I went in to oramintation very bad it took me a long time to get out of it then my doctor asked me if I would like to see a neurologist the best thing I done checked me all over then she put me on pregabalin 75 mg one tablet at 6 then one tablet. at 9 with 2 codene very good the best thing ever happened all them years suffering with RLS and climbing the walls and walking around outside all the best to you xHenshaw 241241 please let me know how you get on

bill54321 profile image
bill54321

Ropinole .5 mg before sleep and if day time jerks, before meals. Magnesium jell on the legs. A little unknown fact is the Brain Barrier can hold magnesium in the brain and not let it defuse out fast enough. It can increase RLS. This is a call for an endrocrinologist (sp).

in reply to bill54321

Hi, I'm guessing you mean doesn't allow if to "diffuse" out.

It's not a bomb, although magnesium is highly flammable when ignited. Don't go too near naked flames. :-)

Perhaps you can clarify this?

Magnesium is generally thought to relieve RLS.

I can find no evidence that magnesium can get across the Blood Brain Barrier (BBB) one way, but not the other. If the process by which it crosses is simply diffusion, then it's probably the same both ways.

I also note that magnesium makes the BBB less permeable and this may have some benefits e.g in preventing cerebral oedema.

Most pathologies involving brain magnesium seem to occur as a result of low brain magnesium and this may be due to a disturbance of magnesium homeostasis which usually regulates levels within normal parameters.

Although it may be true that magnesium is toxic in other ways.

etchea33 profile image
etchea33

Hello Hoochybaby and all forum members. I have been following this forum for a little while but have not taken part up to now. It has been so helpful and comforting to find out that many of the RLS symptoms and experiences I have suffered from over the last 10 years are shared by others. What prompted me to write in reply to you, Hoochybaby, is that apart from RLS, I also have atrial fibrillation and take Apixaban, a beta blocker ( Bisoprolol) and statins. When my RLS started 10 years ago, I was prescribed Pramipexole, then, when it stopped working, Ropinirole, then the Neupro patch which I did not tolerate, then Pramipexole + Gabapentin. Each time, my symptoms came back after a while. The neurologist told me I had augmentation and the only way to deal with it was to slowly reduce Pramipexole to zero if possible. When I got to 0,088 mg ( twice a day) my symptoms stopped for 5 weeks and I thought I'd cracked it. Unfortunately they gradually came back and I slowly increased Pramipexole again in the hope of finding a dose that would best manage my RLS. I did not find it and was advised to reduce Pramipexole again, increase Gabapentin and take Tramadol to help with withdrawal symptoms. I am now on Pramipexole 0.088, Gabapentin 400mg and Tramadol 50mg, each twice a day. Tramadol has been a godsend for me and really helps with dealing with the intensity of withdrawal symptoms. The trick for me is to take the meds before the symptoms start, and that can vary. At the moment it is 1pm and 10pm.

My serum ferritin ( 175 ug/L) , serum magnesium and B12 are all normal and I am not taking any suppleents.

Has anyone tried homeopathic remedies ? I met a homeopathic doctor who knew about RLS and advised 2 remedies : Zincum Metallicum 9CH and Rhus Toxicodendron 15CH for 3 months +. I think it has helped with the frequency of symptoms, although it is difficult to know when taking all the meds at the same time.

Sorry this post is so long. Looking forward to further exchanges

Hoochybaby profile image
Hoochybaby in reply to etchea33

Hi etchea33 my journey with rls is very similar to your experience. At present I'm not taking any prescribed medication my rls is not as severe as it used to be but it is a nuisance and sleep is difficult but at least I do get some sleep a few months ago I used to be up all night. I don't want to go back on to pramipexole because of augmentation and the difficulty I had in coming off the drug. A neurologist I went to privately had put me on a very high dosage and never mentioned augmentation ( that's if he knew about it).

I do have an appointment with a different neurologist who I have been told specialise in rls early April but now I am considering not attending due to the corona virus Sheffield have had cases or transmission.

Is Tramadol available over the counter or is it a prescribed drug?

etchea33 profile image
etchea33 in reply to Hoochybaby

Tramadol is on prescription only. It is an opiate and I was reluctant to take it at first. But in a low dose ( 50 mg) it works well to calm down rls symptoms and help with sleep, without side effects, in my case.

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