Ropinerol

[glochessum]

I’ve just been started on repinerol for rls. Tried pregabalin and gabapentin, low doses and gained 7lbs in as many days.

I desperately need something to work.

[Joolsg]

Ropinirole is no longer first line treatment because of the very high rate of augmentation ( severe worsening of the RLS). That's why you were started on pregabalin.Did you take both pregabalin and gabapentin together or separately? They both take at least 3 to 4 weeks to become fully effective and the average effective doses are 150mg pregabalin, 1200mg gabapentin. Doses lower than this would not be very effective.

However, if weight gain was an issue ( both drugs cause water retention and increased appetite) low dose opioids may have been a better solution.

Did your GP do full panel fasting blood tests to check serum ferritin, serum iron?

The majority of RLS can be resolved by raising serum ferritin levels.

Did he check whether any other meds you're taking may have triggered RLS, like anti depressants, anti histamines, statins, beta blockers and PPI meds?

If you've just started Ropinirole, please read the pinned post on augmentation and the website information at RLS UK and consider holding off until you have raised serum ferritin.

If you decide to continue, keep the dose of Ropinirole as low as possible. Do not increase above 1mg. If it stops working, slowly reduce.

Make sure your serum ferritin is above 100 preferably 200. Your doctor will tell you levels are 'normal' but for RLS, the levels need to be much higher.

[glochessum in reply to Joolsg]

I took them separately but both put weight on me and ankles and feet started to swell. I’ve got a blood test booked on 18th. I also take venlafaxine 188mg, I’ve taken it for over 20 years. I was on 325mg, I also take 50mg trazedone. I’m really at my wits end now and can’t take it any longer.

[glochessum in reply to glochessum]

After reading about it in here I’m not going to take it. Only been on it for 3 days so should be ok to just stop. I was prescribed it 6 years ago and decided not to take it then. I’d forgotten about that.

[Joolsg in reply to glochessum]

Sensible decision.Sadly, venlafexine triggers or worsens RLS. However, as you've been on it for 20 yrs swapping it may not help as many people report it causes permanent RLS. However you could trial swapping it for trazodone and Increasing the trazodone dose. Trazodone is safe for RLS.

Both pregabalin and gabapentin cause swelling and increased weight ( increased appetite) but if they control the RLS, most people accept the side effects and they do often settle after about 2 or 3 months.

If you really didn't get on with them, low dose opioids are the next option but first do try to get your bloods up.

Tramadol, codeine or Oxycontin are all prescribed for RLS in the UK.

Show your GP the Mayo algorithm as they need to be aware of the latest treatment.

Good luck.

[SueJohnson]

As Joolsg said, ask for a full panel blood test. The normal tests for iron do not test for ferritin. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. 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%. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.