Help with medication

[Coza72]

Hi all I need some advice for my mother who is 78 and has suffered with RLS for as long as I can remember she has been on quinine since 2009 and has been taking 2 on advice of the gp who suggested if one wasn't enough take 2 she has took 2 for years only to be told that she shouldn't have been! The gp has put her on amitriptyline and took her off quinine this has made her 10 times worse! Mom is on kits of medications for all sorts of ailments so please any advise as to what medications would be suitable for someone of her age with lots of medical issues! She is becoming increasingly depressed because of no sleep and the GP isn't interested! Thanks all

[Joolsg]

Change GP! Quinine is useless and hasn't neen prescribed for years and years. Plus it's dangerous.Amitriptyline worsens RLS and is on the list of medications to avoid if you have RLS. She should stop taking it now as she has only just started and is suffering as a result.

She needs to have bloods taken and ensure serum ferritin is above 100., iron above 60. Raising levels resolves RLS for the majority.

Check all the meds she's taking as many trigger/worsen RLS including anti depressants, sedating anti histamines, proton pump Inhibitors, statins and beta blockers.

Read all the pinned posts on here and visit the main RLS UK website.

Also have a look at the NHS and NICE articles on RLS. Your GP will need to do some research as he/she clearly doesn't know much. Hopefully they will acknowledge that and read the information you supply. The latest and best treatment algorithm has just been released in the USA by the Mayo Clinic. Your GP should read that as well.

If raising ferritin doesn't help after 3 months, there are meds that can help. Pregabalin is now the favoured first line treatment. Be wary if the GP offers Ropinirole or Pramipexole as they cause a severe worsening of RLS at some point and getting off them is the only solution but that is hellish and to be avoided.

mayoclinicproceedings.org/a...

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

[Coza72 in reply to Joolsg]

Thank you for your speedy reply I have been in touch with her GP today who has suggested upping the amitriptyline to 20mg which seems insane to me and she will not be doing Mom is already on 600mg of pregablin per day and has been for years due to other illness she is also on morphine patches amongst alot of other medications ie statins etc she has recently been put on beta blockers for heart failure and we are currently waiting for results of heart scan! She has worsening kidney function and heart problems which the GP kindly informed me is more than likely due to the fact she's been having too much quinine for a too long a period!! Its like banging my head up a brick wall no GP's in our area are accepting new patients! I am so worried for mom's mental health which is rapidly declining and also my own as I am her main carer since we lost my father 5 years ago and I feel like I am letting her down by not getting her the help she needs! It's so upsetting seeing her suffering day after day with RLS along with all her other problems!

[Joolsg in reply to Coza72]

I am so, so sorry to hear that. Yes, the quinine causes heart failure.Definitely do NOT increase the Amitriptyline- stop taking it as it will worsen the RLS.

The pregabalin and morphine patches should really help her RLS. Maybe once off the Amitriptyline, the RLS will settle.

If she has heart problems and is having a scan, ask if there are alternative treatments to beta blockers as they are known to worsen RLS but clearly her heart specialist needs to ensure her heart condition is under control. You may need to consider legal action because quinine has been known to be useless for RLS and to cause heart issues for many, many years.

Also ask if there are alternatives to the statins as they trigger RLS. If she's taking them for blood pressure, getting the RLS under control and a good night's sleep will reduce blood pressure. We know that from some of our members. If she's taking statins for diabetes, perhaps changing diet may be better.

Also, changing the timing of the dose of pregabalin may help the RLS. Taking it at night time rather than throughout the day may help her to get 7 or 8 hour's sleep.

Do tell the GP that Amitriptyline makes RLS worse ( sent mine through the roof!).

Here's the list of meds to avoid and safe alternatives produced by rls.org the US foundation.

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[Coza72 in reply to Joolsg]

It's so difficult with someone who has so many different things wrong and all that need individual medications and finding the right balance between them all! Yes GP wasn't even aware that mom had been on quinine since 2009 and another GP had told her she could take 2 a night if 1 wasn't enough she had never been reviewed with regards quinine! I am steadily losing patience with GP's and their incompetence! My main priority is finding a way to help my mom live whatever time she has left comfortable and at peace and not depressed and fed up with living with RLS!

[Elffindoe in reply to Coza72]

Jools give excellent advice. Especially, the reference to the Mayo clinic recommendations which are excellent.

NO quinine, NO amitriptyline.

[LotteM in reply to Coza72]

Joolsg has given you excellent info and advice. I just 'hit' on the kidney failure you mentioned. That is one of the main causes of (secondary) RLS and can only be treated by treating the kidney failure. In any case, stopping the quinine and the amitriptyline (slowly, carefully if needed) seems first and foremost.

I hope your mom gets better soon re the RLS. And kudos to you for looking after her. My sisters do the same for both my parents and I know it is very demanding, both in time and emotions. I hope you still can find time and ways to look after yourself and recover in between the demands.

[Madlegs1]

You have great advice here.I will say no more since by doing so ,I would break an awful lot of laws.

All the very best with your Mum, and keep strong in yourself.

This is a good site. Read as many posts as you can-- an excellent education!❤️

[Ducatidave]

Hi. Please read my posts on ‘what we eat’. I would expect that you mother likes salt and chocolate. Salt intake should be brought down to zero added. It’s massive with my RLS.

[Coza72 in reply to Ducatidave]

To be honest no mom doesn't eat chocolate and she rarely has salt but thanks for the reply xx

[involuntarydancer]

Horrified by the medical advice your mother has received. As everyone else has said, stop amitytaline.

Unfortunately, so far as rls is concerned, your mother’s GP is only one of many in not knowing how to treat it and indeed inadvertently doing additional harm. It is essential to inform yourself. You mother’s rls can certainly be improved and the sites Joolsg suggests are well worth visiting.

It would definitely be worth insisting on a blood test from your GP surgery to measure serum ferritin. Get the actual figure (not just that it is ‘fine’ or ‘normal’) and if it’s below 100 start an iron supplement (provided it’s not counter-indicated by other conditions). See elsewhere on this forum for advice on optimizing iron absorbancy. As Jools says, raising serum ferritin can resolve issues for some sufferers.

Also as Jools says, be cautious if your GP suggests starting a dopamine agonist such as pramipexole (mirapex), ropinetole (requip) or totogotine (neupro patch).

I’m not surprised your mother feels depressed with rls on top of everything else. It is a horrendous condition to have to live with but I’d be fairly sure that things can be improved for your mother. Good luck

[involuntarydancer]

If your mother is on blood thinners you could ask if they could be replaced with dipyridamole. This drug is currently being studied for potential beneficial impact on rls so she might get a ‘double whammy’.

As Jools said (I might just shorten it to ‘a J s’ I type it so frequently), she will also be deriving some benefit from the morphone and pregabalin she is already taking.

[Coza72]

Update on mom she is currently in hospital awaiting surgery for a broken hip she had a fall Saturday night this is all she needs after everything else she's had to deal with this year x thanks to all for your messages it's been a great support to me x