Not sure...

[ruby]

Hi
I'm not sure if it's okay to post here because I'm not the RLS sufferer, my hubby is? I thought I had better come clean upfront! I'm trying to understand how I can help him, aside from emotional support which I try to give even when my nerves are on edge after what seems an age of him struggling with the syndrome.

He has been on pramipexole for almost a year and it has been a huge help. It's not been 'the cure' but at least we could get a little sleep. The only side effect seems to be that to me - he often seems in a brain fog. Connecting with him is quite difficult sometimes. I don't know if that is because of the drug or just because he is so often tired despite it, or both.

Anyway, last week a scan showed up fatty liver and he had to go off the pramipexole so that they can test his enzymes next week to see if the drug is the cause of his liver issues. It might not be the cause as he may also have hemochromotosis - he is getting the gene test for that so we just don't know yet. His sleep specialist said there is no evidence that pamipexole can damage the liver, but the doctor wants to rule this out as a cause.

The doctor prescribed him a 'stand in drug' I forget the name. That night after taking it, he had full body jerking the whole night. He slept through some of it but I was very worried about him. I have never seen anything like it, usually his legs just kick. I think it might have been withdrawal as well as the new drug - whatever it was, his brain/body went into a crisis. In the morning he called his sleep specialist who said to take codeine - this has helped, but again it's still not optimal.

I also got him a tens machine - it helps for daytime movement. Daytime RLS is a new thing - he never used to get RLS during the day. Is it possible this could be due to withdrawal from pramipexole?

He is still very tired during the day & we are at a stage where we are looking at our life as we once knew it ebb away. It's like swimming in a vortex, every day we just get tireder & more despondant. I get anxiety attacks at times about what the future holds and I cry a lot although I don't let him know. He can barely work and we are facing financial issues because of it on top of everything. He looks and feels ill. It's so scary and I feel so sorry for him.

Even though we are both worn down I can't rest! I have read as much as I can on the subject, researching day & night to try to find a way forward.
I'm sure many of you have done the same. It looks like there are few answers and trying to manage it is about the best it gets ( if one can do that effectively) but I keep hoping we will get lucky! I hope you all will too.
Sorry for off this longgg offloading...but I don't really know where else to turn at the moment.

[debbluebird]

He is probably going through some withdrawal from the Pramipexole. It will last anywhere from a week to a month. Probably a week or two. The fog is from lack of sleep. Even though he seems to be sleep through the jerks, he is probably waking up everytime for a moment which messes up the sleep. I have used the TENS, which helps some. The day time stuff will probably stop after all of this is over.
I have kidney issues from all of my drugs and when the drugs aren't there the levels go back to normal.
As far as the hemochromotosis goes, I'm sure they will look at everything. Iron, or the lack of it, can contribute to peoples RLS/WED. I have high Ferritin, they don't know why, but a low iron. I still take iron everyday. It is a real puzzel. Not all doctors understand it and don't know what to do with us. You should have a level of 100 on the iron for the Pramipexole to work.
Lack of sleep can cause memory loss, confusion, blurry vision, depression, dizziness, weight gain or loss,trouble speaking, hallucinations, irritability, tremors and fatigue. Of course Pramipexole can cause weight gain and other symptoms.
The moderators here will give you lists of things for both of you to look at and things not to do. Or the things that make RLS/WED worse. Also the jerks are called PLM Periodic LImb Movements.
You should also get him on this site.

[ViewsAskew]

First, post as much as you want! We're not WED snobs . Anyone who cares about anyone with WED is welcome.

Please look up the name of the drug that caused the problem - could be very important.

My guess is that pramipexole caused augmentation. It's when the drug makes the symptoms worse and it happens with pramipexole all too often. The symptoms start earlier in the day and they can be stronger than before. When you have augmentation and you stop the drug, you go through a period of much-worsened symptoms. It lasts a few days to a few weeks, usually.

Interesting that he may have hemochromatosis. It's not common, but it does happen.

Yes, it does feel like your life is ebbing away, doesn't it? Since mine became severe, my life has changed dramatically, as has my husband's. Your husband is lucky to have you helping him.

[badnights]

yes, it is withdrawal from the pramipexole. The increased severity and the daytime occurences. It should reduce down to the level of symptoms he had before he started the drug, in a week to 4 weeks. Your doctor knows that this withdrawal should be treated with an opioid, but usually a strong opioid is given for 2 weeks, not codeine which is low potency.

As Deb mentioned, iron is related to the disease. Iron may be high or low in the rest fo the body but it's low in the brain, in WED/RLS patients; there's an issue with it crossing the blood-brain barrier. Ferritin is a protein that transports iron, and it's commonly low in RLS/WED patients. Low ferritin in association with DA's like pramipexole can cause augmentation, a horrible worsening of the symptoms, which is why it is no longer recommended to take pramipexole is ferritin is below 100 ng/ml.

So it's interesting that he may have hemachromatosis. The usual remedy of taking oral iron supplements would be ill advised if he does. (Oral iron works to raise iron levels in the brain, simply by flooding the blood with iron I guess - I'm missing something there, but that's the gist of it.)

You hang in there, things will get better, but be prepared to do more of what you're doing, and/or get him involved as well. The more you learn, the more you can advocate for proper treatment, That is the single worst thing about this disease, maybe even worse than the disease itself, is how darn hard it is to find doctors who know anything about it. So we need to teach our doctors, even as we learn from them. Some of them don't realize how devsatating the symptoms can be, and it's hard to describe to them. But keep doing this, learning and arming yourself with information, and life will get better again.

[ruby]

Thank you all, it really helps not to feel so alone in this. I have to say that PLM sounds a lot better than jerking limbs! I hope my husband will join this group shortly - you'll understand when I say right now he is too exhausted and struggling to just hold onto a job, all his enegry goes into this. I do tell him what you have said and it means a lot to him.

I'll let you all know how if the hemochromotosis tests positive. Debbluebird, sounds like you have quite an odd thing going on with your overall iron. Very interesting that the prampxl needs enough iron to work effectively - thanks for that info. Seems there are many iron disorders - genetically my husbands dad had overload due to hemochromotosis. I read that sometimes despite the oveload in the body - the brain in hct people can have low levels of iron. His mum had alzheimers which is partly due to iron overload in the brain. I'm thinking it is going to potentially be quite a thing to find a balance considering his genes!

The drug the GP prescribed to get him off pramipexole was amitryptyline 25mg. Never again!

He is now taking codiene to much better effect. Last night he almost slept the whole night through into the late morning. First time in a year.

This morning he said that he feels his brain is coming back.

He took 1 codeine (15mg) at bedtime & slept around 3 hrs - then his legs started. He got up and took 2 codienes. He then slept soundly until 10am. So that was 45mg's in all.

Does anyone know what the maximum safe dose of codiene is? I'm trying to work out if the dose he took could be considered high or low.

Also do codiene users find as time goes on they need more of it to stave off rls, or does a set amount generally remain stable over time?

Thanks again to you all for your warm support & this site, it's a lifesaver!

[badnights]

Good lord, amytriptyline!
I was pretty sure your husband was experiencing nothing other than withdrawal from pramipexole, which can consist of extreme exacerbation of WED symptoms. However, amytriptyline is a tricyclic anti-depressant, which is known to exacerbate WED/RLS symptoms. I wonder why teh GP would have prescribed an anti-depressant? Did he think your husband's issues are psychatirc? But he seems to have educated himself quickly, to have replaced it with codeine, because codeine is an opioid, which are known to be effective in WED/RLS treatment.

I hope his GP has learned that pramipexole can cause withdrawal that consists of worsened WED symptoms. This is not something that happens in people who take pramipexole for Parkinson's, which is probably more what his GP is used to.

Please print off two things for his GP, and take them with you when your hubbie next goes (hopefully soon). One is the International RLS Study Group's recommendations for RLS/WED treatment:

2012 _IRLSSG _Summary-of-RLS-treatment-recommendations-FINAL_highlights.pdf

(127.49 KiB) Downloaded 160 times

In this copy, I have already highlighted the parts that I think are important for your hubbie's GP to know, mainly concerning the use of pramipexole and other dopaminergic medications, and are very important if your husband is to continue taking pramipexole or ropinirole in future.

The second thing is a paper that I paid to download and which is, I think, copyrighted by the publisher; I am "lending" you my copy of it. It was written by a well-respected clinician with decades of experience in treating WED/RLS, and summarizes the current state of clinical knowledge. I can't highlight it for you, it's locked, but I have noted the sections that are relevant to long-term use of pramipexole or ropinirole:

Buchfuhrer 2012_Strategies for the Treatment of RLS _Neurotherapeutics.pdf

(438.84 KiB) Downloaded 166 times

Highlight the following:
page 778 Antidepressant Medications (the title)
page 780 at bottom right:

However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, In the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole). However, augmentation may occur even at the
lowest doses of dopamine agonists.

page 781-782

Currently, severe augmentation cases comprise approximately 75 % of
consultations performed by RLS experts. A recent study by Silver et al. [111] found that after 10 years approximately
70 % of patients with severe RLS on pramipexole (mean
dose, 1.3 mg) discontinued their medication due to augmentation.
The frequency of augmentation in clinical practice
with less severe patients is likely much lower and has yet to
be fully determined, but this is clearly a very significant
issue and patients should be closely observed for any signs
of this problem.

page 782

The medication can be
tapered down slowly or can be stopped abruptly. In either
case, a potent opioid (methadone, oxycodone, and so forth)
should be prescribed to cover the marked worsening of RLS
symptoms, which will predictably occur with the withdrawal
of the dopamine drug. This exacerbation of symptoms
typically abates within a few weeks or months of stopping
the dopamine agonist, at which time the opioids may be
reduced. Anticonvulsant drugs (discussed as follows) may
be added to further reduce or eliminate the need for opioids

The way to present these to the GP is to hand them to him, already highlighted, and say something like "I came across these papers when I was looking for information on the disease. Can you tell me what you think of them? There seem to be parts that are relevant to my husband."

By the way, I should clarify the iron thing. It's not that pramipexole needs iron to work; it's more that lack of iron in the presence of pramipexole can cause a severe worsening of the disease itself. Some people think that's because pramipexole does not target the right receptors - so it sort of works, but eventually backfires. This backfire can happen very fast if ferritin levels are low.

I'm sorry to make this post so long, but in answer to your questions about codeine:
He should not exceed the prescribed dose! because then he may be accused of using it recreationally. I know that's ridiculous, but we have to be very careful with opioids. It's great that his GP gave him something, but really (as you can see in the paper above) a high-potency opioid is recommended during pramipexole withdrawal, not a low-potency one like codiene, so the GP is perhaps a little nervous about them.

If he needs more than prescribed one night, he should take less another night, so he does not run out before time. If things are crazy, call the doc and tell him the dose that worked. I was taking up to 180 mg nightly at one point, plus I was taking gabapentin 1800 mg, which was a high dose of both. It was safe, so to speak. but every person is different, and most importantly, I Was presscribed that amount.

Re as time goes on: a tolerance can be built, which means that slightly more codeine is needed over time. Tolerance is hard to tell from the typical, gradual worsening of the diease with time. The need should not rise rapidly.
-- Dependence will definitely occur if it is taken long enough. That is nothing to be worried about; all it means is the body will have a physical withdrawal reaction when it is stopped.
-- Addiction is when the medication is craved for uses that are not related to symptom relief. Make sure the med is never used for anything but symptom relief.

I hope your husband is feeling better and the withdrawal is easing.