Augmentation issues

[Bean49]

I have augmentation from ropinorole and have decreased my dose from 4 (500mcg) to 3 per day. Every day since I have had a headache. My doctor can find no reason for the headaches and I wondered if it could be a side effect of withdrawal. Has anybody else experienced this? Also, my doctor has suggested a slow transition from ROPINOROLE to ROTIGOTINE which seems to also be a dopomine agonist. Has anyone got any other recommendations? On the plus side, my restless legs have been great since I reduced the dose.

[Hidden]

Great news to hear you've managed to reduce the ropinirole and your symptoms have improved.

This is actually a bit unusual, as a rule when reducing a dopamine agonist symptoms get worse at first. This is withdrawal effects and if you carry on reducing withdrawal effects could continue until at least 2 weeks after you stop altogether. That is, if you stop altogether.

Thefe is no need for a slow transition from ropinirole to rotigotine, they're both dopamine agonists you could just do a straight swap.

However, that's the problem. Rotigotine is also a DA and also causes augmentation. Not such a good idea to switch from one DA to another.

Your doctor perhaps doesn't realise that DAs are no longer the preferred first medicine to be tried for RLS

The recommenced medicine now is an alpha 2 delta ligand i.e. either gabapentin or pregabalin. These do not cause augmentation.

You can start taking one of these at the same time as the ropinirole, then if you wish, reduce the ropinirole further. As you reduce the ropinirole, you can increase the ligand.

For full effect the ligands take 3 - 4 weeks to work.

Here's a link to an up to date article on RLS treatment. Read especially the sections on augmentation and the alpha 2 delta ligands. You may have to educate your doctor about up to date RLS treatment.

uptodate.com/contents/treat...

It would also be useful to ask for blood tests for iron deficiency. Brain iron deficiency (BID) can be an issue with RLS even if you don't have iron deficiency anaemia. The tests you need then are for serum iron, transferrin and ferritin as well as haemoglobin. The ferritin level is particularly significant as if this is too low, you may be at risk of BID. 50% of people with RLS benefit from raising their ferritin to at least 100ug/L. NOTE it being "normal" is not sufficient!

A ferritin below 100ug/L can be raised by using an oral iron supplement e.g. "gentle" iron,vtaken every OTHER day, on an empty stomach, in the evening the same times as a glass of orange or vitamin C.

If you have deficiencies in magnesium, vitamin B12 or vitamin D, you may also benefit from taking supplements in these.

If you're taking any other medications, they may have been making your RLS worse or may even have caused your RLS in the first place. It's worth mentioning then if you take any other medications at all or ever did.

Taking an antidepressant triggered my RLS years ago and I spent many difficult years on a DA and only recently realised that if I'd known aboult RLS and antidepressants, I may never have needed the DA

There is quite a long list of medicines which make RLS worse

I'm not certain the headaches are a result of lowering the ropinirole. It's possible. I have come across another forum member before who experienced the same.

If they become unbearable paracetamol and codeine may help. The codeine may actually help with DA withdrawal effects.

[Joolsg]

Reducing the dose of Ropinirole does have the paradoxical effect of reducing RLS. It happened to me initially.

However, you will probably find the augmentation starts up again sometime soon. It did for me quite quickly.

I’m concerned that your neurologist has suggested a switch to the Neupro patch. A switch is only advisable if Ropinirole has stopped working, not where it has caused augmentation. Once augmentation has happened on one DA, it’s just a matter of time before it happens with another.

If augmentation starts again on 3mg, reduce very slowly and don’t take another DA.

[Bean49 in reply to Joolsg]

Thanks for your advice. Have you any recommendations on what to take if the RLS is still there when I no longer take any ropinorole. That's my fear!

[Joolsg in reply to Bean49]

There are 4 classes of drugs to treat RLS. Dopamine agonists, Alpha2delta ligands (Gabapentin, Horizant and pregabalin), benzodiazepines & opioids.

Most countries are reluctant to prescribe low dose opioids ( although they are safe and highly effective if prescribed & monitored correctly) so the alpha2delta ligands are now first line treatment.

Pregabalin (Lyrica) is probably the best option. It takes 3 weeks to become fully effective and the average effective dose is 150mg. It should be increased slowly (50mg a week). Side effects usually settle after 2 or 3 months.

If you do decide to withdraw- read all the posts on pramipexole /Ropinirole withdrawal and go as slowly as possible- min 3 months up to a year.

Often an opioid will be required to get you through the withdrawal ( it can be unbearable for the majority).

Once off Ropinirole you will find the RLS is much less intense and happens only in the day. It can take several months to settle and find the right combination of meds.

The more you read and the more knowledge you have, the easier it will be to persuade your doctors and neurologists how to help you. Sadly, the overwhelming majority of medical professionals know very little about the disease. (You will see many instances of negligence- doctors prescribing very high doses of dopamine agonists and then cutting off meds leaving patients to suffer life threatening cold turkey.)

Print out all the research articles- a good doctor will be willing to read them and work with you to reduce the Ropinirole safely and prescribe an appropriate alternative.

Inceasing serum ferritin helps reduce the severity of withdrawal and it can relieve RLS in 50% of cases.

[Bean49 in reply to Joolsg]

Thank you all so much for the advice, I feel much more positive about coming off the ropinorole. I will take the information back to my doctor and ask to try pregabalin or gabapentin.