RLS seems to be mainly in my arms now

[RLSofManyYears]

For the last few months my fore arms have been getting sore and involuntary jerking. I still get the jerking of my legs and midriff but that is less so. The symptoms are appearing 24/7 and only by being continually active do I get any respite. However the lack of sleep is a real drain on me.

I was on Ropinirole, up to 4mg, for years then I switched to 200ugm Temgesic, which allowed me to sleep right though for 6 months. For the past 6 months or so I have been on 2 x 200ugm Temgesic and an occasional Zopiclone sleeping tablet, when I needed a full nights sleep. However the problem with my arms grew worse and so I made the difficult decision to switch back to Ropinirole about a month ago. I'm now taking 4 x 25mg per day, which is not a big dose but should be enough having been off it for about 18 months. The problem is that it does not seem to have made any real difference and there's no way I want to increase the Ropinirole.

No major change in lifestyle, Covid free, iron levels seem OK, I'm low on sugar, zero alcohol and only one cup of coffee a day.

My doctor does not know much about RLS and the consultant wasn't much help several months ago either. So I'm in a bit of a quandary not knowing the best way ahead. I look forward to your thoughts.

[SueJohnson]

Increase the temgesic. Dr Buchfuhrer says the average his patients are on is 450mcg daily. And stop taking the ropinirole since it isn't helping by reducing by 25 mg every couple of weeks. You say your iron is fine. Do you know what your ferritin is? Doctors will say it is fine because they are looking at what is normal for other people when those with RLS need more.

[RLSofManyYears in reply to SueJohnson]

Thanks Sue. I cannot find my last ferritin levels from 2 months ago but they seemed fine. The checks were for ferritin and serum iron. I'm actually getting them checked again next week and I'll update with the results.Re the Temgesic, the 2 x 200ugm is just short of the 450, so are you saying I should up it to 3 tablets i.e. 600ugm? 200ugm is the smallest available tablet.

[rls-insomniac in reply to RLSofManyYears]

My consultant allows me to take up to 600mcgs of Temgesic if my symptoms are troublesome. On average I take between 400/500 mcgs which seems to control my symptoms for the most part.

[RLSofManyYears in reply to rls-insomniac]

How do you manage 500ugm? Cut tablet in half?

[rls-insomniac in reply to RLSofManyYears]

Yes. I bought a pill cutter. I see Jools has given you some good advice. If my symptoms start in the evening, I take 200 mcgs straight away. I then take the remaining dose a couple of hours before bedtime.

[Joolsg]

I agree with Sue & rlsinsomniac.Going back on Ropinirole is a backward step. The augmentation will happen again quickly.

You were only 6 months off it so your dopamine receptors can take up to 2 years to settle and repair from the damage caused by Ropinirole. It's a very dangerous drug.

Increase the Buprenorphine. Buy a pill cutter from Amazon. Also try taking 0.2mg 2 hours before bed. 0.2mg at bedtime and 0.1mg if you wake up for a loo break.

0.5mg should work and stop the arm symptoms.

Are you on any other medication? Anti depressants, anti histamines, statins, beta blockers and PPI meds all trigger RLS.

I hope it settles but Ropinirole is not the way forward. After augmentation, any Dopamine agonists are bad news.

[RLSofManyYears in reply to Joolsg]

Ah, I hadn't realised that it took two years for the effects of a DA to wear off. I had reckoned that a year would have been fine. Oh, well then, I'll reduced the Ropinirole and get back on the Temgesic (I have a few left and have a consultation with the doctor on Friday where I'll let him know what I'm doing - I know more about this than he does!).

The only other medication I'm on is 300mg Pregabalin, which I've been on for several years now. 50mg in the morning, 200mg at 8pm and 50mg at 10pm.

[Joolsg in reply to RLSofManyYears]

As soon as you go back on a DA the over excitement of D1 receptors starts again so it will take a while after stopping Ropinirole for everything to settle down again. Hope the withdrawals aren't too traumatic.

[TeddiJ in reply to Joolsg]

Such helpful info for me, too, Joolsg. Thank you!

[RLSofManyYears in reply to RLSofManyYears]

Well I had a telephone consultation with the doctor and he initially agreed to prescribe Temgesic. He was very concerned about the pain in my arms and so I'm booked in for a checkup next week. However he phoned back to say he had discussed with a colleague and wanted to see how the reduction in Ropinirole went before prescribing Temgesic. So not much sleep last night. By the time of the checkup I'll be very tired🥱🥱🥱

[SueJohnson in reply to RLSofManyYears]

Blankety blank doctors. Come off the ropinirole slowly even though you have only been on it again a short time. On the pregabalin unless you need it in the morning switch the morning dose to an hour before your arms start to bother you and take all of the evening dose an hour before bedtime. You don't need to take it 2 hours apart.

[SueJohnson in reply to RLSofManyYears]

Whoops - I just looked back at your post and saw you have it 23/7. In that case you might want to divide the pregabalin into 3 doses spaced equally throughout the day. Are you by any chance in the US?

[RLSofManyYears in reply to SueJohnson]

No, Scotland. My arms and legs have been bad today from about 4pm onwards. Not sure yet when I'll be able to go to bed because as soon as I relax then the jerking starts again. Oh well 3 more nights and then I hope I'll be able to persuade the check-up doctor to prescribe the Temgesic. The first doctor has now gone on holiday.

[SueJohnson in reply to RLSofManyYears]

Good luck.

[ziggypiggy]

The forearm RLS is my warning signal that a new medication is not going to work for me. Although it sounds like it has come about without any med change for you. I'm just here to commiserate with the forearm symptom. It ranks as one of the worst. Best of luck.