Scared Tipti

[Tipti]

I’m new to this forum which looks very helpful

I’m 85. Have Had RA for 28yrs. Had a heart attack last year but fully recovered & although I’ve had RLS on & off for many years it is now worse than all ailments put together. Have been on Gabapentin & pregablin then pramiprexole & now roprinirole. Now I read about augmentation with such alarm. I take 2mg roprinirole at 5.0pm which kicks in at 7.0 Followed by a short deep involuntary sleep period & then free from RLS for the night, though not always. But half way through the morning the agony starts & I become almost insane & hysterical with the continuous movement & the inability to sit down or rest. It attacks my whole body. With horror I realise I shouldn’t continue with roprinirole or similar medication. Help

Tipti

[Joolsg]

Hi Tipti,

Welcome- you have come to the right place. The good people on here know more about RLS than most doctors. We have to educate ourselves because medical schools do not teach anything about RLS.

You have read enough to realise you are suffering Augmentation from Ropinirole.

The only thing you can do now is to slowly get off these dopamine agonists- reducing by 0.5mg every 10 days.

You will need your doctors on your side during this time because it is really difficult to do without opioids to relieve the constant RLS - it increases in severity during withdrawal.

Also get your bloods taken and make sure you get the actual number for serum ferritin which needs to be above 100. If lower, increase by taking ferrous bisglycinate every other night by pill and in skin patch from PatchMD in USA- they are cheap and post quickly to Europe.

Also take magnesium citrate at night ( 3 hours apart from Gabapentin or pregabalin as they interact).

Make sure you are not on meds which make RLS worse like most anti depressants and anti histamines.

Withdrawal is really difficult for most but it is possible and once off Ropinirole, pregabalin should start to help ( I take 150mg of pregabalin at night only and 25mg OxyContin over 24 hours).

You mentioned that you had tried Gabapentin and pregabalin. Was this before you took any pramipexole or Ropinirole? Did it help at all? If taken with dopamine agonists Gabapentin and pregabalin won’t help while you are augmenting.

Let us know what your doctors say and keep us updated on your symptoms/ withdrawal.

[Tipti]

Thank you very much for that. I was on gabapentin & pregablin years ago with not much help. Any ideas about melatonin ?? I very much fear opiates. Will certainly have another iron test. Tipti

[Joolsg in reply to Tipti]

Gabapentin and pregabalin may work better for you with a small dose of an opioid.

I understand the fear of opioids. I was terrified at the thought of taking them. However, I read all the medical textbooks and all the information on opioids in research articles and on the US RLS foundation site and realised they are used at low doses and are very effective for RLS. Unless there is a family history of abuse or addiction, opioids are safe if prescribed and monitored by a knowledgeable doctor.

I really hope your GP listens to you. Show him/her the articles about augmentation and discuss a safe plan to reduce the ropinirole.

[involuntarydancer]

I would like to agree with everything Joolsg has said. She is an extremely knowledgeable, thoughtful and considered poster. I would particularly agree with getting serum ferritin checked. At least half of all sufferers find symptoms improve once iron levels increase. However this will only really take effect once you have eliminated ropinerole/pramipexole if you are augmenting (which sadly it sounds as if you are). Unfortunately withdrawing from these drugs is difficult and opioids are the only drugs that really help with the greatly exaggerated symptoms that occur during and immediately after withdrawal.

I agree with Joolsg that opioids, though scary in theory, are probably a good option in your case, Tipti. Used in the treatment of RLS, they have a very good outcome and are very different in effect from when used in the treatment of pain, still less for recreational purposes.

If you had a heart attack previously you may be currently taking blood thinners and it is worth being aware that dipyridamole (also known as persantin - normally used as a blood thinner) is being used as an experimental treatment for RLS. It may be worth trying this as a replacement to an existing blood thinner (if you are taking one) to see if it could also assist with your rls. I have tried it for my rls; in my experience it is not a silver bullet but does help with some symptoms.

[Tipti in reply to involuntarydancer]

I wrote this morning but it disappeared. I’ll try again.

Thank you so much for your comprehensive help with my woes.

My serum ferritin is 57 so will certainly get that topped up. I’ve just been taken off the blood thinner after a year.

As GPs know so little about RLS & nothing about augmentation I’m wondering about seeing a neurologist ?

Today has been pretty bad. Started early morning, 3.30 & stopped at around 7.30 this evening after ropinirole at 5.0pm. Also had 2 low dose co-codamol at lunch time which did nothing to help. Had to keep walking as couldn’t rest so legs & back became very painful.

Daren’t reduce ropinirole until I have something else to help. It’s so exhausting but v important to keep some sort of sense of humour during calm times.

Tipti

[involuntarydancer in reply to Tipti]

I applaud your attitude. Only the darkest of humour is available to RLS sufferers in my view.

Accessing knowledgeable medical help is very difficult with this condition. Unfortunately, many neurologists are equally as uninformed as GPs - unless you can access one with a specific knowledge of RLS. There are some recommendations of knowledgeable neurologists in the UK on here but I don't live in UK so can't usefully comment. Some sufferers have had success using studies and articles printed from sources on the internet to educate their GP about the condition and the various treatments. Another possibility is to order the medical textbook Clinical Management of Restless Legs Syndrome by Buchfuhrer, Allen, Lee and Hening (all RLS experts) which is available on Amazon. It is a good book and your GP may be prepared to consider some of the options suggested in there (there is a lot about the use of opioids and some information on augmentation from dopamine agonists also though it is slightly out of date now with attitudes of experts hardening if anything against dopamine agonists such as ropinerole). It is worth being aware that opioids have been used to treat RLS since the sixteenth century. In general a relatively low dose works and many people find that they don't need to increase their dose for many years.

You mentioned melatonin earlier and I would just comment that some people (though not all) report noticing that their symptoms disimprove when taking melatonin.

I would definitely look at raising your iron levels. 57 is not high enough. Many on here take gentle iron (aka iron bisglycinate) which can be purchased in Holland and Barret. Eating liver (if you can stomach it) is supposed to be the most effective means of raising iron - better than iron rich veggies apparently.

Many people report that a 'clean' restrictive diet can be helpful for their symptoms. I definitely notice red wine has a terrible effect - also white wine and beer to a lesser extent. Too much sugar is also bad and in particular ice cream can have a negative effect. I would also echo what Joolsg says about checking that you are not on any meds that have a negative impact on RLS. There is a list of meds somewhere in the RLS UK website - there is also one in the book I mention above.

I really hope you manage to get some relief. Your situation sounds dreadful. Dr. Mark Buchfuhrer - a world expert in the treatment of RLS and a truly compassionate man - expresses the view that almost all RLS sufferers can achieve a treatment regime which allows a near normal life so you should be looking for something better than what you are experiencing now. Dr. Buchfuhrer answers emails from sufferers - usually within 24 hours of receipt. You can find a list of questions and his endlessly patient and comprehensive answers on his website at rlshelp.org. You might wish to send him an email yourself. I would imagine he would suggest withdrawing from ropinerole with the aid of an opioid such as oxycontin or methadone. There is one product which has been licensed for the treatment of RLS by the EU called 'targinact' which is based on oxycodone. Given that it is specifically licensed for RLS your GP might be prepared to consider it.

[Not-methadone-addict]

Hi,

I noticed that magnesium citrate was suggested. Please don’t take that as a supplement. It is actually used to either help with constipation or as part of bowel prep for a colonoscopy, especially if you drink half or the whole thing. You want magnesium glycinate, which is absorbed by your body the best. I get one called Pure Encapsulations because they don’t use all that artificial garbage. There are, however, cheaper options.

Sus