DA Questions

[C82021]

I was prescribed and have these drugs "But Haven't Used Them "

But I am curious, so:

Question is, are they a "low dosage" and considered safe for RLS ? ( so as to avoid augmentation)

Pramipexole Dihydrochloride 0.25M

Rotigotine 1 MG/24HRS Patch

[SueJohnson]

No they are not safe and will result in augmentation.

[Elisse3]

I agree with Sue don’t use them. I am curious as to why you were prescribed two dopamine meds were you told to use both of them together. ? Which is even worse if so. Think you need to find a new doctor.

[C82021 in reply to Elisse3]

No, two separate DR's The 1st one prescribed pramipexole, I refused and was told to seek another doctor. Second one asked why I refused the advice, then prescribed rotigotine.

[Madlegs1]

The Pramipexol is at the highest allowable dose for RLS. The usual starting point would be 0.088mg-- so not sure what is going on there.

Don't know about the Rotigotine.

Not sure why both are being prescribed.

This is almost illegal prescribing. And certainly immoral.

Doctor should be reported.

[SueJohnson in reply to Madlegs1]

Actually .5 is the maximum amount. .088 usually prescribed in the UK is equal to ,125 mg usually prescribed in the US.

[MrCrow in reply to Madlegs1]

0.125 mg pram dihydrochloride has 0.088 mg pram afaik. The dosage is reported differently in different places.

[Joolsg]

Why would any knowledgeable doctor prescribe a high dose of Pramipexole AND Neupro at the same time? He clearly hasn't read the latest research and evidence.Refer him to the Mayo Clinic Algorithm and the new guidance from the American Academy of Sleep Medicine, which relegates these dangerous meds to 'end of life scenarios'.

Have you had full iron panel blood tests and a review of any trigger meds?? That should take place before any meds are prescribed.

[C82021 in reply to Joolsg]

Sorry for any confusion, two separate times two different Dr's. Yes on the iron panel. Currently taking 350mg of Pregabalin, 100mg-7pm, 150mg-8:30pm, and 100mg 10pm. Have appointment at Vanderbilt with a specialist in Oct.

[Joolsg in reply to C82021]

I hope the appointment goes well.Does 350mg pregabalin cover your RLS?

[C82021 in reply to Joolsg]

No, I keep a symptom and food tracker, and for years just no solution. I have hopes with Vanderbilt. For years it was Gabapentin 1800mg, with the same feeling with slim results. I decided to cut back, very slowly, all was going good for 6 months with little symptom change. Then wham, back with a vengeance. That's when I went to Pregabalin 75mg start to now 350mg.

[Nikos64 in reply to C82021]

Please watch out for weight gain and excessive sleepiness from pregabalin. I too was on a large dose and slept so deeply I started being late for work.

I gained 25lbs on pregabalin. It was effective in stopping RLS, but maybe it was because it knocked me out so deeply.

Also my wife said I was thrashing in bed while I was asleep.

[Theonlypetied in reply to Nikos64]

Oh my days, you have just described my life! You write in the past tense. What are you taking/doing now? Thanks.

[Nikos64 in reply to Theonlypetied]

I’m currently on 1400mg gabapentin and 5mg oxycodone. This works almost perfectly. I also lost 40lb and exercise daily.

Not sure I would recommend the oxycodone. It is tightly regulated. If you have to travel often you have to plan your travel around it because most pharmacists do not accept out of state prescriptions. There’s also shortages of this drug due to the DEA … I could go on…

Prior to oxycodone I was on Tramadol which is also controlled but easier to obtain and works fairly well for RLS but it also keeps you from sleeping.

Basically, my advice is consider opiates as your absolute l last resort. They are powerful and potentially dangerous drugs and you will become dependent on them.

It's a difficult decision.

[Joolsg in reply to Nikos64]

We are all totally dependent on meds for RLS.I was dependent on dopamine agonists, then gabapentin, then pregabalin.

[Nikos64 in reply to Joolsg]

I agree, but here’s what bothers me about being on long term low dose opioid treatment: If I forget to take my dose, it’s going to be a miserable night, not just RLS but flu like body aches and no sleep. It’s a double edged sword. I just wish there were better treatments out there.

[Joolsg in reply to Nikos64]

I never forget my meds. The thought of severe, all night torture from RLS is a great reminder.Everyone with severe RLS will need to take meds regularly and on time.

If someone forgets their gabapentin they can also experience withdrawal symptoms.

And there will never be better meds until everyone with RLS mobilises and demonstrates to demand doctors are taught about the disease and we all start fundraising/contributing to RLS-UK and RLS.ORG. Research requires funding.

If everyone with RLS paid £50 a year towards Research, we would have nee meds.

[Nikos64 in reply to Joolsg]

Could not agree more! Donating towards RLS research is fundamental for improving the condition of those afflicted by this disease. I also donate fairly regularly for this cause. Thanks for bringing this up for others to consider too.

[Theonlypetied in reply to Nikos64]

Thanks for your reply. I have tried gaba but it turned me into a zombie. Went to Berlin one weekend and have little recollection of it and slept every time I was off my legs! I’m in the UK so under different regs here. My best to you.

[SueJohnson in reply to Nikos64]

If you were thrashing in bed while asleep you also have PLMS which is treated the same way as RLS and the majority of people have both.

[Joolsg in reply to C82021]

Gabapentinoids often don't work, particularly if the patient has been on Dopamine Agonists previously.Your next class of meds will be low dose opioids- methadone or Buprenorphine.

Hopefully Vanderbilt will be aware of how effective they are for RLS.

Good luck.

[SueJohnson in reply to Joolsg]

They should as they are a Quality Care Center.

[Nikos64]

I agree with everyone else’s advice but I also would like to encourage you to take these prescriptions and throw them in the trash IMMEDIATELY!

I’ve been on both ropinirole and Pramipexole and I believe they irreversibly made my RLS worse. Not only that … coming off them was pure HELL.

Sorry for the obnoxious bold words but I cannot stress how evil this medicine is for treating RLS.

After you dispose of these medicines please find another doctor. Pulmonologists and Sleep specialists are your best bet. Even though this disease is fairly common most GPs don’t know how to treat it!!! At least in the U.S.

Best wishes for your journey in finding relief !

[TheDoDahMan]

Speaking of pulmonologists , that's what the great and most knowledgeable Dr. Buchfuhrer is. And if you're going to be on an RLS med for the rest of your life, low-dose methadone, at a mere 10mg per day, has been a superb remedy for me for the past 5 years. Keep it in mind if all else fails.

[violetta254]

Don't ever take them. Find a doctor to prescribe methadone if the Gabapentin or pregabalin does not work. Oxycodone did not work well for me and getting ER oxycodone which is the only kind that sort of works, is impossible in the US. Methadone has given me my life back although the daytime sleepiness is difficult, particularly if you have to drive very much. But I get about 6 hours or more of mostly uninterrupted sleep.

[Delilah162]

I would steer clear. I’ve been on them for 9 months on top uk dose of 5 at night. I have augmentation and now need to wean off them.

I wish I had known about this forum when they were prescribed!