Advice on why???

[Nanpat]

welcoming anyone that has theories on why this has happened suddenly. I have had severe restless legs for 30 years, last 10 years pacing up and down from 11 p.m. till 4 am. I thought I would never get any relief until I read about buprenorphine on this site.

Have been on 15 mg patch for 12 months with no restless legs at all.

I spent five months in hospital last year with a back problem and had no restless legs. Have been home now for three months and it has started up again this week. I’m still wearing my patch. I have had a change in three medications but that was three months ago, does anyone have any ideas why it would have started now? I honestly believed that I would never suffer again so I am very disappointed.

[Joolsg]

The three medications that you started 3 months ago might take time to work up in your body and cause the increased RLS.What are the meds?

Also, your iron levels might have dropped. So get full iron panel blood tests to check your serum ferritin And serum iron levels.

Interestingly, Dr Winkelman's opioid study does report that many people need an upwards adjustment in opioid dose in the first year.

Inflammation from your back problems can also worsen RLS.

You may need to switch to the 20mcg patch or add a small dose (0.1 or 0.2mg) of Buprenorphine sublingual at night in addition to the 15mcg patch.

[Nanpat in reply to Joolsg]

thank you for your quick reply 😊. It’s 2am here and I’m still up. Meds are jardiance and carvedilol ( non selective beta blocker)

My iron levels were up and down before but the patch covered that, I can’t understand why it’s no longer doing so…..at my wits end!

Is it possible my body now needs a stronger patch, I didn’t think that happened usually?

[SueJohnson in reply to Nanpat]

I have not found anything that says jardiance makes RLS worse, but carvedilol does.

Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

[Nanpat in reply to Joolsg]

forgot to mention seems to be mainly in arms more so than legs at moment

[Joolsg in reply to Nanpat]

Both those medications can worsen RLS. But of course you need them for High Blood pressure and cholesterol/diabetes.So discuss fully with your doctor.

There may be alternative ways of controlling the High blood pressure and to reduce blood sugar.

Read any of Chris Colombus replies- he uses an alternative to statins that doesn't worsen his RLS. It's called Ezetimibe. Discuss with your doctor.

nhs.uk/medicines/ezetimibe/

Also- I presume you are completely off all dopamine agonists ( Ropinirole, Pramipexole. NEUPRO)?

Definitely raise your iron levels to above expert recommended levels and ask your GP for the 20mcg patch OR add 0.1/ 0.2mg buprenorphine sublingual pills.

[ziggypiggy]

No evidence for this just my own experience, but I find that when I'm having bad restless arms they don't respond as fast or as well than my legs symptoms for my opiod. Arm symptoms are just stubborn as all heck. You may find that an increase in dosage will do the trick.

[LotteM]

People have given you good advices. Nothing to add. Discuss with your doctor (do insist) to change your blood pressure meds. If that doesn’t help, or meanwhile, maybe you can het buprenorphine 0.2mg sublingual pills (Temgesic or generic) to add to you patch when needed? I find that sometimes even 1/2 a pill (thus 0.1mg sublingual) can do the trick.

[Nanpat in reply to LotteM]

I agree, have been given good advice and taking all on board.

Was just wondering if you can build a tolerance to bup patch.

Thanks for your reply

[LotteM in reply to Nanpat]

Hard to say. Several studies have shown that opioid doses for RLS remain generally and on average about the same over a lo g period (5-10years, no longer studies available). So not likely. But we rely on personal stories to learn how things work out for an individual. I have been on a bup patch for 3 years now. Still same dose.