Restless Legs Syndrome (RLS) Discussion Board

Thank you Holland, are you saying that no matter what our ferritin level is, we are still uncertain of how much iron reaches our brain.

A little funny .... My autocorrect replaced 'Ferritin ' with 'terrorism'. Not entirely inappropriate, Sometimes it feels like our own personal terror.

Polar Bear wrote:Thank you Holland, are you saying that no matter what our ferritin level is, we are still uncertain of how much iron reaches our brain.

YES !!!

Well, mostly yes.... LOL.
If the ferritin is VERY low (<10 or 20) there is a greater likelihood of low brain iron (women of child bearing age have low iron compared to other groups and greater chance of having RLS).

Thank you. I appreciate you taking the time.

(Low) ferratin = terrorism!

My phone changes New Zealand to New Zombie which describes me at night.

Betty wrote:I don't have a follow up GP appointment, I ring the medical practice and make an appointment, or ask for a call back telephone appt, to confirm how it's going and up the gabapentin.
If it is too difficult in the meantime I would ring sooner and ask to up the gabapentin.

Sorry if you already mentioned this, but I don't think I saw it : What then is your withdrawal plan? Will you taper? By how much how fast?

Holland wrote:Currently it is recommended that the ferritin for RLS patients be above 75 or 100. Those that have ferritins less than that MAY respond to oral iron, though most don't.

It is my understanding that RLS/WED patients with ferritin < 75 are quite likely to respond to oral iron, whereas those with ferritin >100 are not as likely to. Did you mean more instead of less in the second quoted sentence? Or am I missing something?

badnights wrote: It is my understanding that RLS/WED patients with ferritin < 75 are quite likely to respond to oral iron, whereas those with ferritin >100 are not as likely to. Did you mean more instead of less in the second quoted sentence? Or am I missing something?

Beth,
I think that the phrase "quite likely" in your statement is not supported by the evidence.

This is a quote from the IRLSSG paper on iron therapy:
"5.1.1. Evidence-based guidelines
Oral iron as ferrous sulfate 325 mg (65 mg elemental iron) twice
a day with 100 mg Vitamin C twice a day is possibly effective (level
C) for treating RLS for patients with a serum ferritin
75 m g/l, but
possibly not effective (level C) for the treatment of RLS in adults
who have a serum ferritin >75 m g/l."

The paper goes on to discuss the evidence for oral iron treatement in people with more-or-less "normal" ferritins. The evidence is really quite poor, no class 1 studies, no level A or B recommendation. There were two class II studies quoted, one class III study, and one class IV study.

Compare with the recommendation for IV Iron:
"5.3.1. Evidence-based guidelines
Ferric carboxymaltose 1000 mg is considered effective (Level A)
for the treatment of moderate to severe RLS in patients with a
serum ferritin <300 m g/l and transferrin saturation < 45%."
This was based on three Class I studies and other evidence.

Remember that only about 1/2 of RLS patients receiving IV iron have ANY improvement. Why would those getting oral iron have a better likelihood of responding?

I think it is accurate to say that those with a ferritin below 15 have a better chance of responding than those with higher ferritins. We commonly say to take iron in this forum if your ferritin is below 75, and I think that is a reasonable statement, but the reason is not that those with a ferritin between 15-75 are quite likely to respond, but is that they MAY respond, it is cheap, requires no doctors visits, and has almost no down side.

What then is your withdrawal plan? Will you taper? By how much how fast?

Beth, The withdrawal plan ??? Well, I guess as I was overprescribed and have been reduced by 1mg down to 4mg daily, it has kind of started.
I should see GP in a month and take it from there.
My understanding is that as the Ropinerole is reduced my GP will up the Gabapentin and up the codeine and/or change from codeine to a stronger opioid.

It will have to taper as I was on 5mg daily.
How fast..... I don't know. And certainly my GP doesn't really know, trial and error I think.... playing it by ear.
Which will likely mean very slowly.

It has crossed my mind to email Dr B, providing my medication details and asking for his opinion on how to approach the Withdrawal.

Dear Betty,

Well done for taking the first step in reducing your ropinerole and many good wishes for the forthcoming gradual elimination. I am certain you will not regret it ultimately. You may find your symptoms settle down quite a lot and are much more treatable once you have washed the dopamine agonist out of your system.

A couple of things I noticed when I was eliminating pramipexole in 2016 (which I did without any opioids - my sleep consultant would not countenance them) which may be helpful for you - First, I was surprised at how low my dose of pramipexole got before the symptoms started to get really bad. It might be worth looking out for this yourself because if you had a similar experience it might be possible to take a lower dose of codeine initially so that you have a small stockpile for when things get really bad. Secondly, when I finally got off pramipexole, even though I was on pregabalin, my symptoms did not settle down for quite a while. I now think this was because the devastating sleep disruption actually exacerbated the rls symptoms even though the dopamine agonist was washed out of my system. I finally persuaded my GP to prescribe oxycontin and once I was on a strong dose of this my symptoms gradually started to settle down. It is worth looking out for this if you are prescribed an inadequate dose of opioids. It is very important to ensure that you get some good sleep once you have eliminated the dopamine agonist.

All the best,

Rachel

Thank you legsbestill. I am hoping that my GP will be cooperative with sufficient opiate as the ropinerole is reduced. I am not afraid to argue/push my corner in this regard always with documentation.

It is very important to ensure that you get some good sleep once you have eliminated the dopamine agonist.

Well now...... that is but a dream.... It is at least 15 years (much more) since I had more than 3 or 4 hours nightly sleep. I can date it specifically to when we had particular guests on a 3 week visit. That was great fun

How fast..... I don't know. And certainly my GP doesn't really know, trial and error I think.... playing it by ear.
Which will likely mean very slowly.

It has crossed my mind to email Dr B, providing my medication details and asking for his opinion on how to approach the Withdrawal.

I think that's a wonderful idea. You are more likely to get through the taper and withdrawal successfully if you have a concrete plan. When the symptoms get bad, you don't want to have to try to think - your thoughts won't be coherent. It will be best if you can just follow a script, something you and your doctor (Dr B if necessary) came up with together, something that you trust and therefore don't need to think about.
Because you probably will forget why you ever wanted to do this.
And it will be of great benefit to be able to see your course charted out in front of you, not hazy and awaiting some kind of decision from you day by day.

HUGS!

On 23 December 2018 my 5mg daily dose of ropinerole was reduced to 4mg which is the max guideline. I also started on Gabapentin 75mg x 2 daily. There didn't seem to be much of a presence from the gaba.

On 1 and 2 Jan 2019 I did an experiment and took 2 gaba at 9pm and slept much better, just up once for a half hour each night. On the 3rd night it was not so successful. Back to 1 gaba at morning and night, and to about 3 – 4 hours fragmented sleep until hopefully speaking to Dr on Mon 7 Jan 19 per telephone to ask should the gaba now be increased.

Today, Sunday 6 January I have been up most of last night. My rls symptoms just would't settle and I took extra codeine, extra 30mg about 11pm, and then a further extra 15mg about 3 am.
Been vomiiting, 4am and 9.30 am. At 9.30.am. vomited just after taking meds which was a bummer for my meds. I took another lot of meds. Need to speak with Dr on Monday 7th Jan tel appt about increasing the Gaba. Sleep still rubbish except for trying the 2 gaba which didn't work each occasion, symptoms worse, since reduction of ropinerole, now at 3.5mg, only about 3 weeks ago.

Could I be already reaching the stage of feeling the cost of withdrawing from the ropinerole?

I spoke wih my GP this morning. He is increasing the Pregabalin from 75mg x 2, to 100mg x 2 daily and I am to ring him in two weeks. If no problems he says we can go up eventually to 300mg x 2.
Regarding the Ropinerole, I think he is just happy that at 3.5mg, it is below the 4mg max. (covering his back).
I told him that as I wanted to keep reducing the Ropinerole could we consider increasing the Codeine. GP says he is only happy increasing one thing at a time so 'we know where we are'.
I reminded him that I eventually want off this Ropinerole. He says lets take it a step at a time.

So, I am on 3.5mg Ropinerole (which is 1.5mg down from 2 weeks ago) and on increasing Pregabalin. GP wants to see first how the rls does with the added Pregabalin.
When we have done the Pregabalin route, we can then start to reduce the Ropinerole. GP has firmly said he does not want to increase the Codeine while increasing the Pregabalin.
Looks like this is going to be a slow journey. I thought the Pregabalin could be going up every few days and not every two weeks.

Betty, I would definitely email Dr. Buchfuhrer and outline all the drugs you are taking and the plan of your GP. I don't know for sure but I would have thought that pregabalin will not provide adequate cover while you are withdrawing from ropinerole, even if you take long breaks at each stage of the ropinerole reduction. My understanding is that the body screams for its lost dopamine when a dopamine agonist is reduced and that pregabalin is not going to provide the coverage required. It may well work once you have eliminated ropinerole but until then I thought that only an opioid would really cut the mustard. Rachel

Legs ....... I have already emailed Dr B and attached a document detailing my daily medical regime.

What a star he is. I wrote last night and his reply arrived this morning. Dr B says that I will need methadone or oxycodone which he feels is not readily prescribed here. His alternative suggestion using what I have at present would be max Pregabalin (which my GP agrees to) and max Codeine. GP is not relating to the tapering of Ropinerole and the increase of Codeine until the Pregabalin is sorted.

From Dr B....

If you can’t get potent opioids, when stopping the ropinirole (you could try going cold turkey off the ropinirole and if you have trouble, then you can try tapering) may be tried by using the highest doses of codeine in addition to higher doses of pregabalin (up to 300 mg twice daily as long as you do not experience too much sedation).

I was on 5mg Ropinerole, now down to 3.5mg with no awful madness in my symptoms so far.
The Pregabalin at present, without doing any further ropinerole reduction, can only but help, I hope.

Dr B's suggestion of going cold turkey off my present Ropinerole 3.5mg dosage sounds a bit extreme.

Yes, cold turkey from 3.5mg sounds pretty severe. He does have a lot of experience getting people off d/as but I presume he always gives them opioids to assist. Your experience of reducing from 5 to 3.5 without dreadful symptoms mirrors my own in the early stages of withdrawing from pramipexole but unfortunately it is the calm before the storm. Things got very bad when I was down to about the equivalent of 1mg ropinerole and they took a fair while to settle. I think my experience would have been a LOT easier if I had had access to codeine or another opioid however. Hopefully things will go well for you. Thinking of you. I am sure you won't regret getting off ropinerole and may find ultimately that your symptoms are easier to control than presently.