PLMD and pramipexole

[Grandy1962]

I have suffered with restless legs and PLMD since about 2005/6 when I contracted a form of rheumatoid arthritis. Having tried various medications and self help treatments over the years, I am currently on pramipexole (since about a month ago). However, I am finding that my symptoms are much worse recently and I wonder if this is due to the medication. I want to try and steer clear of pregabalin, amitryptaline or tramadol if I can help it but I’m worried that the pramipexole isn’t helping. Has anyone had a similar experience?

[Joolsg]

Welcome Grandy.You say you have tried various medications over the years. What meds were you on before Pramipexole? If you were on Ropinirole before, it could explain why your RLS is getting worse after just a month.

Amitriptyline worsens RLS for the overwhelming majority, so should be avoided.

Have you had recent full panel fasting blood tests recently?

Why do you want to stay clear of pregabalin? Have you tried it before?

[Grandy1962 in reply to Joolsg]

I was on amitriptyline and tramadol for my RA and for depression but managed to wean myself off of both of them. My RA is currently in remission so I am just taking sertraline for the depression. I was on gabapentin for the PLMD but this had little effect and left me feeling a bit like a zombie. I’ve heard that pregabalin is just a stronger version of gabapentin and can be addictive so I don’t really want to go there. I’ve also had a lot of physio and even hypnotherapy but nothing seems to work for long.

Not had blood tests yet but I’m seeing the doctor later today so I’ll ask.

[Joolsg in reply to Grandy1962]

Yes, do ask for full panel, fasting blood tests to include serum ferritin, serum iron.Most anti depressants tend to worsen RLS. Safe options are trazodone and wellbutrin.

Show your GP the Mayo algorithm for the treatment of RLS, written by the top RLS experts in the world. Sadly, RLS is not taught in the UK and the NHS and NICE guidelines are outdated.

Pramipexole and Ropinirole are no longer first line treatment because of the high risk of increase in severity of symptoms (augmentation) which you might be experiencing. Did the Pramipexole work for the first week?

Or the sertraline might be making the RLS worse.

Gabapentin for RLS should be taken ONLY in the evening and before bed and not during the day. Most UK GPs prescribe it 3 times a day. That might explain the daytime 'zombie' feeling.

So try Gabapentin only in the evening in 600mg split doses 2 hours apart. Average dose is between 1500-1800mg.

Pregabalin is in the same class of anti epileptic drugs as Gabapentin but is absorbed more quickly and has slightly different side effects. Pregabalin is abused by addicts because it's absorbed faster. However, it's not 'addictive' unless you have an abuse issues. Pramipexole, on the other hand, leads to augmentation and withdrawal from it can be more difficult than from cocaine, heroin and crystal meth. Another reason it's no longer prescribed first line.

I suggest you very slowly withdraw from Pramipexole, as it doesn't work for you. Discuss all your symptoms fully with the GP.

Have a look at the diagnostic criteria for RLS because you may have peripheral neuropathy, caused by the RA, rather than RLS.

Links to Mayo algorithm and the diagnosis criteria attached.

mayoclinicproceedings.org/a...

rls-uk.org/symptoms-diagnosis

[Grandy1962 in reply to Joolsg]

Thank you 🙏

[SueJohnson in reply to Grandy1962]

On your full iron panel test, stop taking any iron supplements including in a multivitamin 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. On the pregabalin some people find that the side effects that bother them on gabapentin don't bother them on the other. Otherwise your choice will probably be a low dose opioid. Sertraline makes RLS worse for many. Safe antidepressants for RLS are Wellbutrin and trazodone. Discuss everything with your doctor.

[Grandy1962 in reply to SueJohnson]

Thank you 🙏

[Wavy67]

I was on Pramipexole for 5 years, and it worked ok. I thought that I had acquired a new symptom (cold feed, when in fact they were burning hot), But also found if I did not take Pramipexole by a certain time of day I would have trouble that evening, so symptoms were not particularly well controlled. Have now been changed to Rotigotine neuro patches, and the issue of needing to have a tablet by a certain time has come to an end. The cold/hot feet thing is probably unrelated although it is marginally better at the moment.

[SueJohnson in reply to Wavy67]

Just be aware of the symptoms of augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

[SueJohnson in reply to Wavy67]

Have you had your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice. Improving your ferritin is one of the ways to help avoid augmentation.

[Wavy67 in reply to SueJohnson]

yes- I am a carrier for heamochromotosis. My ferritin is 484. The cold/hot feet thing is related to the heamochromotosis not augmentation. Thanks for asking.

[Grandy1962]

Just came back from seeing my GP and, apparently, I had a blood test done not so long ago. My ferritin was 190 and my transferrin was 35 so both are well within normal ranges. I’m not taking any supplements at the moment (iron or otherwise) so it doesn’t look like iron deficiency is an issue. The doctor has increased my dosage of pramipexole to 3x 0.088 milligrams per night and told me to stick with the sertraline for the time being. I’m going to give this a month but I’ll be going back if there’s no improvement.