Hi, there : I’m DJ-F

Stumbled by accident upon this forum over Christmas, which I’ve been spending in bed courtesy of a nasty chest infection. I have suffered from both RLS and OSA for the past 10 years but, fortunely, both have been under control for most of this time, thanks to Pramipexole and CPAP. I’m located in the UK.

The OSA was diagnosed first at a local general hospital, but fortunately I was referred on to a specialist sleep unit, where OSA was confirmed and RLS also diagnosed by more sophisticated sleep studies.When I was shown some of the CCTV images alongside the physiological monitoring records, it was readily apparent which episodes of sleep disturbance were due to wild leg movements and which were due to apnoea. No wonder my poor wife had reached the end of her tether, what with my horrendous snoring and frequent attempts to kick her out of bed! It would be no exaggeration so say that CPAP and Pramipexole have transformed my life.

What strikes me on browsing through recent Forum posts is the very wide range and severity of symptoms that are lumped together under the heading RLS. I guess it’s not surprising that there’s no “best solution” for everyone, especially when (as seems, from the Forum, to happen not infrequently) RLS and OSA are managed by different specialists in different locations. I must be very fortunate to be cared for by a single sleep specialist, at a famous specialist Sleep Unit. Treatment is all evidence-based: no “let’s try this” or “let’s give that a go”!

I’m also fortunate in that pain has never been a major feature, although my feet do get painful at times. No, it’s the involuntary leg movements that are my main difficulty. Unless I take Pramipexole before going to the theatre, my legs start jumping about by the second half of the performance, and I had been known to throw myself violently out of bed in pre-Pramipexole days.

Interestingly, whilst I’ve been in bed over Christmas, I stupidly ran out of Pramipexole, and feared the worst, both in terms of leg movements and withdrawal symptoms, but I have experienced neither. I have, however, been taking the antibiotic, doxycycline so perhaps this is having an unexpected secondary effect. I’ll stay off the Pramipexole for the next few days and see what happens!

[involuntarydancer]

Hi DJF and welcome to the group no one wants to be part of.

As you will probably have gathered from reading some of the posts, the general consensus here would favour keeping pramipexole dose to the absolute minimum with many fervent advocates for avoiding the drug altogether. It works like a miracle to start with but in due course (variable from one person to another from weeks to decades) it starts to feed the condition and can ultimately be torture to discontinue.

While you are on pramipexole it is extremely important to keep your iron levels high as I’m sure your knowledgeable consultant will have informed you. It is a good idea to get a serum ferritin test if you haven’t already and get the actual figure (they invariably report that it is ‘normal’ But normal for Rls is ideally over 100 whereas can be as low as 20 for non-sufferers).

Hopefully the antibiotics will continue to cover your Rls - it would be novel to say the least - I’ve never heard of them as a treatment - but enjoy the relief while it lasts.

All the very best.

[Hidden in reply to involuntarydancer]

Thanks for the welcome!

I do have serum ferritin measured from time to time, and was once prescribed an appropriate supplement when-my specialist felt it was a bit low (apparently standard “iron tablets” (ferrous sulphate) are useless in this situation). That apart, Pramipexole has worked well for me for 10 years.

Six days cold turkey so far, and no adverse sequelae, nor jumpy legs! I don’t really expect this to last - antibiotics notwithstanding - so I’m ready to ramp the Pramipexole up again as necessary. I’ll keep you posted!

[Joolsg in reply to Hidden]

Hi DJF & welcome.

If you’ve been off pramipexole for a week & haven’t experienced withdrawal symptoms that is brilliant!

Sounds like your serum ferritin was low in the Past so make sure it’s above 100 by tasking gentle iron ( ferrous bisglycinate) every other day and you may be one of the lucky people who can avoid meds once your ferritin levels are restored.

Really hope you manage to stay off pramipexole.

Good luck

[DicCarlson in reply to Joolsg]

I would second the Iron deficiency route - it totally eliminated the severe RLS symptoms literally in days. Yes, Ferrous Bisglycinate is the Iron supplement that readily crosses the blood brain barrier.

[Hidden in reply to DicCarlson]

Thanks, DicCarlson

For some reason or other, here in the UK, Ferrous Bisglycinate appears to be approved as a food additive, but not as a medicine. It is therefore available in health food shops but not in pharmacies or on prescription, sobthere is no offical, evidence-based guidance on indications, dosage, interactions or side-effects.

Hey, ho!

[DicCarlson in reply to Hidden]

amazon.co.uk/Solgar-Gentle-...

[Hidden in reply to Joolsg]

Thanks, joolsg!

My understanding (I’m a retired medical scientist, but certainly not a haematologist!) is that serum ferritin alone can be misleading as an indicator of iron status, and that transferrin saturation should also be carefully monitored. This is particularly important in patients in whom RLS has been diagnosed as a cause of sleep disturbance, especially when accompanied by OSA: such patients (of which I am one) tend to be, ahem, on the large side, and “normal” serum ferritin levels in obese individuals are markedly different from those in the general population.

Iron deficiency is a know contributor to augmentation in patients being treated with dopamine agonists (such as Pramipexole), so we are a group in which the diagnosis of “iron deficiency” requires particular care. There are a number of reports in the literature concerning patients with serum ferritin levels well above the cut-off generally used for iron supplementation in RLS (i.e. >50 ng/mL) but with low transferrin saturation, whose symptoms improved dramatically with iron supplementation.

For what it’s worth, when my iron status was deemed unsatisfactory, my specialist prescribed ferrous gluconate as being the most appropriate form of iron supplementation, and his advice has not let me down in a decade! I have to undergo bimonthly blood tests for a totally unrelated reason, and am able to add serum ferritin and transferrin saturation to the request form from time to time: I realise, however, that this may not be so straightforward in countries with insurance-based healthcare systems.

Another day free of jumpy legs and withdrawal symptoms: can my luck last??

[Joolsg in reply to Hidden]

You clearly know your stuff! Yes, the iron status is confusing for those of us with RLS. In the USA they give iron transfusions

hopkinsmedicine.org/neurolo...

This website is a really useful guide.

I really hope your luck lasts>

Jools

[Hidden in reply to Joolsg]

Thanks for the interesting link, Jools. I had not heard of anyone being given iron infusions, but I can certainly see the benefit of bypassing the GI tract.

As for knowing my stuff, well, I am a scientist, after all! My sleep specialist, who I have known for 10 years - what will I do when he retires?? - would not dream of offering me advice without chapter and verse on the evidence base. I am probably fortunate, given the current pressures on the UK NHS, but I feel it would be disrespectful, as well as discourteous, to treat a reasonably intelligent patient otherwise.

Here in the UK we have a network of support groups, and I have always found it helpful to spend time sharing experiences with local fellow-sufferers.

Thanks for your good wishes

D

[involuntarydancer in reply to Hidden]

My understanding is that serum ferritin measurements tend to be more accurate at lower figures. Thus if your figure is low; this is likely to reflect the reality and to be a cause for concern in relation to rls - I am not sure whether body size has any implication in this regard. Unfortunately the higher the measurement the greater the possibility that intervening factors may have caused a spike or artificially raised levels.

Perhaps this explains the high serum ferritin/low transferrin saturation conundrum you refer to in the literature, DJ-F.

I know my sleep consultant has always stressed that in relation to rls it is the serum ferritin level that is significant and my recollection is that Dr. Early of Johns Hopkins also states this in one of his webinars.

As I understand it, the figure that is of true significance is the ferritin level in the brain and one of the theories of causation is that there is a problem with iron crossing the blood brain barrier in rls sufferers. Unfortunately taking such a measurement is not a matter of a simple blood test and is possibly better reserved for post-mortem.

Forgive me if you already have these books, DJ-F, but as a scientist, and especially one involved with local support groups, you may be interested in the Clinician's Manual on Restless Legs Syndrome by Dr. Mark Buchfuhrer (you have probably heard of him as one of the world leaders in the treatment of the condition - I have heard patients of his voice similar concerns about his eventual retirement as those you articulate about your osa consultant - and I'm sure many of the rest of us would feel the same as he also answers emails sent by the many despairing sufferers worldwide, including myself and many others on here - the question and answer section on his website rlshelp.org is very illuminating). Another great medical textbook on the subject - again by some of the most highly regarded practitioners in the field - is Clinical Management of Restless Legs Syndrome by Lee, Allen, Buchfuhrer and Hening.

These are not exactly page-turners but of incredible use to those of us who have not had the good fortune to receive knowledgeable or caring treatment from the medical profession for our condition.

Although in many cases without the benefit of a scientific training, there is a wealth of knowledge, information and experience proffered on this and other rls fora?? (am never sure if this is considered an acceptable plural of forum outside of the world of classical scholars). I sometimes wonder if the disease is linked to an intelligence gene, such is the amazing capacity for self-education to quite a high level amongst sufferers in an area where the medical profession is very often not sufficiently educated or interested but is nonetheless happy to wade in with what is frequently wholly inappropriate treatment.

On a less curmudgeonly note, it is wonderful that you have managed to spend a week off pramipexole. Even if the good spell comes crashing down tomorrow, this is fairly clear evidence that you have not yet augmented on the drug.

[Hidden in reply to involuntarydancer]

Thanks for those references. I’ll buy the intelligence gene idea!!

Sadly, having come to the end of my course of doxycycline, I’ve begun the New Year with a disturbed night, leg-wise. On the other hand, it was a rather late one, and more than a little alcohol had passed my lips! If it happens again this evening, it’ll be time to return slowly to Pramipexole. Oh, well, there goes my Nobel Prize for Medicine....

Got a lot of Christmas present books to get under my belt before dipping back into the RLS literature!

Happy New Year!

D

[Hidden in reply to involuntarydancer]

wonderful info. I learned a lot. Thanks you. irina1975

[Hidden in reply to Hidden]

Hi DJ-F Yes, iron infusions are fairly common here in the US (can vary from different insurance companies as they are usually expensive. )I hope we (medicare age) patients will continue to be covered under some of the health care changes our illustrious president has in mind.!!

[Annacartwright]

Hi I have tried and failed with Pramipexole as I could not sleep properly and when I did I had nightmares. I am currently on 800mg of Tegretol which, although I get some early bedtime twitches, seems to allow me to sleep most of the night. Hope this helps. Anna

[Hidden in reply to Annacartwright]

Thanks , Anna.

I am getting ready for my 6th night without Pramipexole: not a twitch so far....,!

D

[Shaft1952]

I have had RLS all my life & am 65yrs old also my 2 sons have it. they have it mild.I unfortunatly have severe now. I to am very lucky that my consultant is a specialist in sleep studies, and has a big interest in RLS. I have had many medications. I am on a medication called pregablin 3 times a day in varying doses, along with pramipexole & codiene. this site is amazing for support. The RLS agm is a great place to go for amazing speakers in the field of rls, also meeting other people with rls. if you go on the web & search RLS uk. you will find so much information. The antibiotic you are on is very strong, but as for its effect on rls that I don't know. I hope you will soon be well and if you need more information, I have looked at a lot of research into rls for my own knowledge. good luck in the future. shaft1952

[Hidden in reply to Shaft1952]

Thanks shaft1952, and for your good wishes - you’re 3 years younger than me!

I don’t really think I can ascribe my successful cold turkey (well, thus far at least!) to doxycycline but, if this keeps up, I may we’ll hit the literature! I have two days left of the antibiotic course....

Happy New Year, everyone!

[Shaft1952 in reply to Hidden]

I also noted talk about iron, I had an Iron infusion in july & felt much better & it did help with RLS, I have had withdrawl from tramadol also what is reffered to as augmentaton to drugs as well. don't see specialist till next September, but I am lucky as I can ring ger secretary at any time with problems, & get messages back from consultant of what to do. I am also in Uk my consultant is in Newcastle, but I live in south cumbria but don't mind the travel to see her, the other specialist unit is in London. hope this info helps.cheers shaft1952

[Hidden in reply to Shaft1952]

I was based at Newcastle General, during the late 1970s, and had to travel regularly to outposts in Carlisle and Barrow-in Furness: I doubt that travel between Barrow and Newcastle is much better nowadays than it was then!

My specialist unit is only 30 miles from home, in Oxford. My consultant is Emeritus Professor John Stradling, a Demi-God in the field of OSA: he should have retired many years ago, but is irreplaceable! It makes such a difference, doesn’t it, being able to obtain specialist advice promptly without having to book a clinic appointment.

D

[Shaft1952 in reply to Hidden]

how true yes travel isn't much better, lets hope your consultant keeps going cheers & happy new year, lets hope it is a good one all round. shaft1952

[Hidden in reply to Shaft1952]

And a very Happy New Year to you, too. Cheers!

[Wendy1]

Snap! I have been ill with pneumonia over Christmas spending quite a bit of time in bed or sitting wrapped in a blanket! Interestingly my RLS was virtually non-existent during this time. As I am now recovering slowly, my RLS has returned! I had antibiotics too!

Has anyone else experienced this anomaly?

[Hidden]

Hi DJ-F Very interesting. Would like to know more about the doxycycline. What are you taking it for? Maybe clearing up another illness is having a positive effect on your rls. Have you mentioned it to your doc?Does he have any thoughts/ Sounds like there might be some dots to be connected here. Just thinking outside the box. irina1975

[Hidden]

I suffer from bronchiectasis, leading to fairly frequent chest infections. Doxycycline is a broad-spectrum antibiotic, which I keep to hand and start taking at the first sign of a chest infection, whilst a sputum sample is being cultured to identify the responsible organism(s) and antibiotic sensitivities. This may sound a bit excessive, but my wife suffers from sarcoid pulmonary fibrosis and is immune-compromised, so it is essential to protect her from any opportunistic chest infection.

I have been unable to find in the literature any evidence that antibiotics may have a role in the treatment of RLS; indeed, there is more to be found on the potential role of neurotoxic proteins produced by Clostridium botulinum and related bacterial species.

The body’s natural immune response to infection is extremely complex and incredibly powerful; I am more inclined to ascribe any fortuitous benefit in relation to RLS to this, rather than to any pharmacological adjunct (although I am happy to admit that I can find no supporting evidence base for this assertion). Perhaps the human organism unconsciously decides to focus its armamentarium upon a genuine threat to its continued existence, and take a break from wreaking uncomfortable, but not life-threatening, havoc In the form of RLS!

David

[LotteM]

David, my thoughts exactly re the effects of infection on rls. I view it as the result of a trade-off, when the body temporarily shuts down or reduces several non-essential processes when fighting an infection. In a completely different setting, I found evidence for this reaction in several experimental studies for my phd.

I don’t think it is a route for rls-treatment, though. I don’t think I want to be fighting infections all the time; or even have my body tricked into thinking it is. But maybe I have to give a bit more thought to the latter option.