Need to Vent

[waterloo2]

Hi all

Me again. I just need to vent I just can't understand
rls at all does anyone?

love gill

[jumpy]

Hi Gil...Nope!!! Pat

[waterloo2]

Hi Pat

Thanks guess im not the only one.

gill

[Polar Bear]

Me neither !!!

[SquirmingSusan]

All I understand about it is that it sure can make life miserable!

[nschirle]

Life can be fine when you have medication that does it's job wo side effects....but what's hell is when they want to take it away from you....makes alot of sense.

Don't get me going....I'll really vent!!!

[waterloo2]

Hi

Too right. There is nothing over here in UK,
you would think that in this day and age there
would be a cure.

Grrrrrrrrrrrr.

My legs have been going crazy tonight, so much
so my arthiritis in me knees are hurting bit time,
so on 2 pain killers.

Thanks for listening.

love gill

[Aiken]

Gill,

People tell you over and over that there are more options available to you in the UK than your doctor is offering. Stop saying there's nothing available over there--there is. You need to find a doctor who knows what he's doing.

[moonlight]

Gill

I agree with Aiken there are options over here.....how bout trying another doctor...my first one said many years ago "go and live with it" I tried cos I knew no better but I think what the hell did he know, no my present dr is brilliant i ask and she tries.
You , like myself , have so many other problems which involve pain , possibly your dr doesn't really focus on your RLS or really understand just how debiliting it is for you.
Give it a go , what do you have to loose, ? you have everything to gain.

huggles
moonlight x x x

ps got appt for tinnitus in 20 June

[Polar Bear]

Gill, there are options.

I live in UK, I am getting treatment for rls !!

[ViewsAskew]

Gill, hope you are hearing Moonlight and Polar Bear.

Venting is certain something we all do...but we also HAVE to work hard to get the care we need. We have to be our own champions. And, really important, we need to try to see the positive - it may be hard, but I truly believe that if you think you always feel lousy, you don't give yourself a chance to see it differently.

Awhile back you asked why people didn't always respond to you. One of the reasons is that while we like to support, we also like hope and finding the positive. We, too, feel horrible much of the time, but we don't always want to think about it, so we like hearing about things other than how miserable we are. Boy, oh, boy, I could make a saint tired if I complained as often as I felt crappy, lol. I just can't let myself do that or it would consume me and become my whole life.

Change your doctor. Get some better help. Find a way to get what you need. And then tell us about how great your life is. I can't think of anything that would make us all happier.

[cornelia]

Gill,

if you want help, you have to undertake EVERYTHING to get it, which means that you have to find a docter who will work with you on RLS, period. If he/she doesn't want to do that: find another one.

I just got dr B's book on RLS written for GP's: it's excellent and an extremely informative book for you and your docter. Pleas buy it and take it to your doc (www.amazon.com).

Corrie

[waterloo2]

Hi Betty

What meds are you on.
There is one for people who have Parkinsons Disease
and works well for rls.
But am wondering about the side effects.
Not sure what the name is.

love gill

[mackjergens]

Gil,
Here are afew websites that are in the UK and have great information about RLS and what is available for RLS in the UK. I recommend you read all of them and print off or email any of these sites to your Dr.

Then on your next appt you can discuss these options/information with your Dr. Read and educate yourself as to what exactly is available for you in the UK for RLS

http://www.restlesslegs.org.uk/

http://www.ukhealthcare.uky.edu/publica ... rlsfst.htm

http://www.ukhealthcare.uky.edu/publications/AI/neuro/

http://www.gsk.com/ControllerServlet?ap ... newsid=808

http://www.parkinsons.org.uk/pdf/is_res ... egs_06.pdf

http://brain.oxfordjournals.org/cgi/con ... /128/4/906

Ok I hope these will provide you with the information you are seeking as to what is available for RLS in the UK. I would read every article above and print off any info that could help your Dr treat your rls. OR I would find another Dr.
Good luck in finding relief for your rls and arith

[mackjergens]

This info was copied/pasted from www.rlshelp.org. The list continues with other meds used to treat RLS, you might wish to go to www.rlshelp.org and read their web site printing off the list of meds that can be used to treat rls, I know that NOT all of them will be available in the UK, but I am sure that there are many that are and your Dr would know the ones available in the UK.
I think I counted 13 different Parkinson meds that are used for treating RLS too.





2) Drugs used to treat Parkinson's Disease - Dopaminergic Drugs
This class of drugs should be considered when the symptoms are not easily relieved by intermittent use of the above sedative medications or for daytime complaints which would preclude the use of sedatives. There is generally a good response (about 90% of patients will respond to these medications) to this class of pills, so it makes a good second choice to try on RLS patients.


Sinemet (Carbidopa/LevoDopa)
This medication has 2 components; LevoDopa (L-Dopa), the active Parkinson's medication (this is a precursor drug and turns into dopamine in the brain), and Carbidopa, an inhibitor of the enzyme (decarboxylase) which inactivates L-Dopa. The short acting form of this medication comes in 3 strengths: 25-100, 10-100, and 25-250. The first number indicates the amount of Carbidopa and the second number is the amount of L-Dopa in the pill. The Sinemet pill most often used for RLS is the 25-100.

Sinemet can be started at half a pill (25-100) 30-60 minutes before bedtime. It can be increased to about 3 tablets before bedtime, and will last about 3-4 hours. For early morning awakenings, another half to one pill can be added to help finish the night's sleep. Keep the nighttime total dose to a maximum of 3 pills. The medication generally works better for nighttime RLS than on daytime RLS symptoms.

Sinemet also comes in a sustained release long acting formulation called Sinemet CR, in both 25-100 and 50-200 strengths. This slow release tablet comes to peak action in two hours, so it is often combined with a short acting Sinemet to get relief within 30 minutes. Sinemet CR can be used in the morning also (in patients who get daytime benefit from this medication) for sustained daytime relief.

The main side effects of Sinemet include nausea, mental effects (confusion, hallucinations, dizziness), and dyskinesia (abnormal involuntary movements which occur with long term usage). The nausea can be avoided often if the medication is taken with food (this can however delay absorption of the drug). Dyskinesias are the most common serious side effect to occur in Parkinson's disease patients taking this drug, but occurs rarely in RLS patients. Periodic monitoring of CBC, hepatic and renal function is suggested.

Two main problems for patients with RLS using Sinemet are rebound and augmentation. Rebound occurs as the drug's action is wearing off with the symptoms coming back even worse than they were before treatment. Augmentation is an increase in RLS problems in general, not just as the drug's effects are wearing off and is the most common reason for discontinuing Sinemet. With augmentation, the intensity of the RLS symptoms can increase, can onset earlier and even spread to the upper limbs. Raising the dose of Sinemet may temporarily help the augmentation symptoms, but in a short while the increased dose just leads to further augmentation. Keeping the Sinemet 25-100 dose at no more than 2-3 tablets per day reduce the chances of getting augmentation (it is rarely seen with 1-2 tablets). Augmentation occurs more readily when RLS symptoms are present before 6:00 p.m. (off therapy).

Sinemet CR generally prevents the rebound problem but does not avoid augmentation. The augmentation effect of worsening RLS symptoms lasts for several days after discontinuing the medication. Mirapex or Requip (see below) can be used to treat Sinemet augmentation by giving one of the lowest strength tablets at bedtime, then adding another tablet every 2 days to that dose if needed. The Sinemet can be discontinued abruptly (especially at the lower doses), but may cause an increase in RLS symptoms for a few days as noted above. Mirapex or Requip (as above) will prevent some of this, or the Sinemet can be tapered off over several days.

NOTE: Due to the problems of augmentation which may occur in 50-80% of patients, Sinemet is likely better for mild intermittent cases of RLS, in which the dose of medication can be kept low enough or on an intermittent basis to avoid these side effects. Another use might be in cases where the other medications do not last through the night, a dose of Sinemet CR added to the other Parkinson's disease drugs at bedtime (and only at that time) may provide all night relief from RLS. Now that there are other better Parkinson's disease drugs available, Sinemet should not be used for RLS (except by RLS specialists who are very well versed with the problems with this drug).


Permax (Pergolide) This drug has been voluntarily removed from the US market as of March 2007
This medication is a dopamine agonist (acts like dopamine on the dopamine D1 and D2 receptors). Permax may work better than Sinemet for daytime RLS symptoms and for more severe RLS. Permax has been shown in a recent study to help patients (73%) who failed Sinemet. Compared to Sinemet it has a longer duration of action of up to 10-12 hours ( Sinemet's duration is only 5-6 hours). It can be added to Sinemet (the Sinemet dose should be reduced as this is done). This drug does usually does not cause significant rebound or augmentation problems as described above with Sinemet. Permax comes in 0.05 mg, 0.25 mg, and 1.0 mg.

Start with Permax .05 mg, 1/2 - 1 tablet 1-2 hours before bedtime. If symptoms start in the evening, another 1/2 - 1 tablet can be taken at dinner time. The medication should be taken 1 hour before the symptoms occur. A middle of the nighttime dose can be added in addition if necessary. For daytime symptoms, Permax .05 mg can be added at breakfast and lunch time. Increase the dose every 3 - 7 days by 1/2 - 1 tablet prior to the times of day with persistent symptoms until the RLS symptoms are under control or up to 0.5 mg (10 times the starting dose) for each single dose or to a maximum of 1.5 mg per day. Most patients can be controlled with Permax 0.5 - 1.0 mg per day.

Go slow with Permax to avoid side effects which include nasal stuffiness, hypotension (low blood pressure), nausea, headache, and lightheadedness. The problem with hypotension can be very bothersome if the dose is increased too quickly. Dyskinesia (involuntary movements) as with Sinemet, seem to occur mostly in Parkinson's disease patients, but not in RLS patients.

A minority of RLS patients on Permax may get tolerant of the drug and need higher doses. This tolerance problem is not generally as bad a with other drugs, such as the sedatives or narcotics, as most will still be controlled by the higher dose. There is little or no cross tolerance with the other dopamine agents (Mirapex or Requip), so a change can be made to another drug once tolerance to Permax becomes a problem.

Augmentation has been reported in some studies with Permax in about 10-22% of patients. The problem is not similar to the augmentation seen with Sinemet as giving more of the medication earlier in the day to treat the RLS symptoms work well, rather than worsening the problem as with Sinemet.

A new study published in the Mayo Clinic Proceedings (Mayo Clin Proc, 2002;77:1280-1286) has just revealed 3 cases of valvular heart disease from Permax. This is similar to what was seen in the past with the diet drug Phen Fen (from the fenfluramine part). Permax is an ergot-derived drug which is a class of drug that has been known to cause valvular heart disease. Although it is to early to know whether there is a significant concern for all patients taking this drug, patients on this drug should see their doctor and an echocardiogram (the best test to see if any valvular heart damage is occurring) should be considered.

In addition, there are several case reports of Pulmonary Fibrosis (scarring of the lungs) caused by Permax. The latest article is in Clinical Neuropharmacology, Vol 25, No. 5, pages 290-293. This problem with Pulmonary Fibrosis should also be considered when using Permax for long periods of time.


Parlodel (Bromocriptine)
This medication, which is also a dopamine agonist (acts like dopamine on the dopamine receptors), has been used with some success in some medical centers. Others have not found Parlodel to be as effective as the other 2 Parkinson's medication above. Parlodel comes in 2.5 mg and 5 mg tablets and should be given in divided doses before bedtime. The usual dose range is 5 - 15 mg per day. Side effects are similar to Permax.


Eldepryl/Deprenyl (Selegiline)
This medication is different than the other Parkinson's medication listed above. It does not work directly through the dopamine system, but is a MAO (Monoamine Oxidase) inhibitor. The MAO type B enzyme (which is inhibited) is responsible for the breakdown of dopamine in the brain. In Parkinson's patients, this medication is given only to patients who are on Sinemet and need additional help (the Sinemet dose is usually then decreased) . Eldepryl comes in 5 mg tablets, and the dose is generally one tablet once or twice daily (maximum dose). We do not have much (if any) experience using this medication for RLS.

Mirapex (Pramipexole)
This is a new Parkinson's medication which is a dopamine agonist. It has more complete and specific binding to the D2 and D3 receptors. It is therefore, a full (not a partial agonist, like the 3 above dopamine agonists) dopamine agonists. The other dopamine agonists do not bind to the D3 receptors, but the function of the D3 receptor is still unknown. The side effect profile is similar to the other dopamine agonists; visual hallucinations, insomnia or sleepiness, fatigue, malaise, nausea (less if taken with meals) and abnormal dreams. These side effects generally occur mostly with the higher doses of the drug. Several studies have shown this drug to be effective in over 90% of RLS sufferers.

Drug interactions may occur with Tagamet (cimetidine) which can increase the blood levels of Mirapex. This drug is metabolized mostly in the kidneys.

Mirapex comes in 0.125 mg, 0.25 mg, 1.0 mg, or 1.5 mg tablets. It should be started at 0.125 mg (the smallest tablet) at 1/2 or one tablet taken 30-60 minutes before the onset of symptoms. For mild RLS, one can start with 1/2 or one pill 30-60 minutes before bedtime, but other doses (of the same 1/2 or one .125 mg tablet) can be added (up to three doses per day). Each of the starting 1/2 or one .125 mg doses can be increased if necessary every 5 days to a total .75 mg to 1 mg (6-8 of the .125 mg tablets) per dose. In a recent study, most patients were controlled by doses between 0.2 - 0.4 mg per day. The maximum dose for most RLS sufferers is about 3 mg per day. Higher doses usually do not add additional benefit.

This medication is new, but experience with its usage in RLS in increasing. Two studies, (Effect of Pramipexole in Treatment of Resistant Restless legs Syndrome. Siong-Chi Lin, M.D. et al, Mayo Clinic Proceedings, June 1998;73:497-500, Encouraging Initial Response of Restless Legs Syndrome to Pramipexole, Philip M. Becker, M.D., et. al., Neurology, Oct.1998;51:1221-1223 and Restless legs syndrome improved by pramipexole, a double-blinded randomized trial. Montplaisir J., et al, Neurology 1999;52:938-943) have shown that this drug can be very effective in RLS and PLMD. In some cases of Sinemet augmentation, that were not relieved by Permax, this drug was found to be successful.

Just as in its use in Parkinson's disease, Mirapex should be started at low doses and increased slowly until the RLS symptoms are mostly relieved. Augmentation has been reported in some studies with Mirapex in about 10-22% of patients. The problem is not similar to the augmentation seen with Sinemet as giving more of the medication earlier in the day to treat the RLS symptoms work well, rather than worsening the problem as with Sinemet.

WARNING!!! Mirapex has been associated with falling asleep while engaged in activities of daily living. This is common at doses of 1.5 mg/day (12 of the .125 mg tablets or 6 of the .25 mg tablets), but is much less common at the lower doses used to treat RLS patients. Do not drive your car until you are sure that you are not having increased daytime sleepiness while on Mirapex (even at low dose)

Requip (Ropinirole)
This is a new Parkinson's medication which is a more specific dopamine agonist similar to Mirapex (binds to the D2 and D3 receptors). Requip is available in 0.25 mg, 0.5 mg, 1 mg, 2 mg, 4 mg and 5 mg tablets. The starting dose should be 0.25 mg, which can be given if needed up to three times per day. The 0.25 mg dose can be increased by 0.25 mg each week for the first four week. Then the dose can be increased by 0.5 each week up to 3 mg three time per day (9 mg per day).

If necessary, the dose can then be increased by 1 mg per dose each week to a maximum of 8 mg three times per day (total of 24 mg per day), but doses greater than 6-9 mg per day rarely add additional benefit. RLS sufferers will generally need between .25 mg and 1.5 mg per day. Parkinson's disease patients generally need between 10-16 mg per day.

The antibiotic Cipro (ciprofloxin) increases the blood levels of Requip. Requip is metabolized in the liver so may be a better choice for dialysis patients.

Side effects with Requip include nausea (can be prevented by taking the medication with food), dizziness, and sleepiness (similar to Mirapex above, but usually at higher doses than most RLS patients tend to need.).

Dostinex/{Cabaser outside the USA} (Cabergoline)
This is the latest of the dopamine D2 (also works on D1 receptors) agonist medications (like Mirapex and Requip above), but is only approved in the USA for the treatment of hyperprolactinemic disorders, either idiopathic or due to pituitary adenomas.

A recent study in the journal SLEEP (May 2000, Vol 1;23, pages 349-54) showed that this drug worked very well for patients with severe RLS who developed augmentation under LevoDopa therapy. Nausea was noted due to the drug, but Domperidone (the only anti-nausea drug that does not bother RLS and is not available in the USA) was used to take care of it. The average dose of cabergoline was 2.1 mg, with a range of 1-4 mg. In another study (presented at the June 2002 Sleep meeting) it was found that .5 mg of the drug helped nighttime RLS and a dose of 2 mg would give 24 hour relief. Another 2004 study found that an average dose of 1.5 mg per day worked very well in patients with fairly severe RLS.

Dostinex is supplied in .5 mg tablets. It should be given 2 hours before sleep. The most common side effects have been headache and nausea/vomiting.

More on this drug as reports become available and we gain experience her in the USA. This drug is used in much smaller doses for hyperprolactinemic disorders and is extremely expensive in the USA if used in the higher doses necessary for the treatment of RLS.

There have been reports of valvular heart disease occurring with Dostinex (Mov Disord 2004 Jun;19(6):656-62) similar to those caused by Permax. Both of these drugs are ergot derivatives (unlike Mirapex and Requip) and have been now linked to these problems.



Tasmar (Tolcapone)
This is one of the newest Parkinson's disease medications. It is not clear whether or not this will be a useful drug for RLS. Tasmar inhibits an enzyme known as COMT (catechol-O-methyl transferase). This enzyme breaks down LevoDopa, and by inhibiting it, more LevoDopa remains in the body - specifically in the nervous system. Therefore, Tasmar works only when taken in conjunction with a LevoDopa containing medication such as Sinemet. We have already described the problems with Sinemet, so it remains to be shown what benefit Tasmar will have for RLS.

Tasmar can be administered orally three times daily starting with 100 mg per dose (it comes in 100 mg and 200 mg tablets). The first dose of the day of Tasmar should be taken together with the first dose of the day of a LevoDopa preparation (Sinemet), and the subsequent doses should be given approximately 6 and 12 hours later. Tasmar may be taken with or without food. The maximum therapeutic dose of 200 mg three times daily should not be exceeded as there is no evidence of additional efficacy at higher doses. Patients with moderate liver impairment should not be increased to 200 mg Tasmar three times daily

Dyskinesia, nausea and other LevoDopa-associated adverse reactions may increase. These adverse reactions may often be mitigated by reducing the dose of LevoDopa. It is recommended that liver transaminases be monitored when starting Tasmar treatment and monthly for the first six months. NB There have been cases of severe liver failure (1 per 20,000) causing the withdrawal of this drug in many countries, except the USA. Other side effects include sleep disorder, dystonia, excessive dreaming, anorexia, orthostatic complaints, somnolence, diarrhea (quite common), dizziness, confusion, headache, hallucination, vomiting, constipation, upper respiratory tract infection, increased sweating , xerostomia, abdominal pain, syncope, urine discoloration, dyspepsia, influenza, chest pain.

We will wait to see if any reports occur in the medical literature on the use of this drug in RLS. Until then, it is best that this drug not be used on RLS patients. This drug is really useful for Parkinson's disease patients who suffer from the "wearing-off" phenomenon (about 50% of Parkinson's disease patients after 2-5 years) where as the disease progresses, Sinemet therapy tends to lose its effectiveness, generally shortening the duration of the therapeutic effect. At the end of the Sinemet dose effectiveness, there is a wearing-off of the drug that is made better by Tasmar.

Comtan (Entacapone)
This medication is the newest of the COMT inhibitors, just like Tasmar above. Since the only function it has is to help prolong the effects of Sinemet, it will likely have no role in the treatment of RLS. The only role of this drug is to help Parkinson's disease patients who have the wearing off effect (when the Sinemet dose gets metabolized too quickly by COMT) of Sinemet. There is no problem with liver disease with this drug (as with Tasmar above) and liver tests do not need to be followed.

Comtan comes in 200 mg tablets and can be taken to a total of 8 per day.

As with Tasmar above, no reports have been noted using this drug for RLS, nor do we expect to see any.

Symmetrel (Amantadine)
This drug is normally used for Parkinson's disease or treating influenza A. A recent trial of this drug was published in the journal Movement Disorders (2000;15:324-327) in which they tested 21 patients with this drug. Half the patients had improvement with this drug and 6 had almost complete resolution of their RLS symptoms. This drug should be started at 100 mg per day and increased by 100 mg (to a maximum of 300 mg/day) until RLS symptoms are better or side effects limit its usage. Side effects in this study were drowsiness, fatigue and insomnia.

Symmetrel comes in 100 mg tablets or a syrup with each teaspoon containing 50 mg.

This drug has been used for many years for Parkinson's disease and influenza, and its use for RLS seems promising. We will wait for other studies and reports to see how this drug works for RLS.

Neupro (Transdermal Rotigotine patch)
Rotigotine is currently under evaluation in the USA and Europe for RLS but is approved in the USA and Europe for Parkinson’s disease. After the patch is applied, there is a lag-time of about 2-3 hours before the drug reaches the body's circulation and about 24 hours until it reaches peak concentrations. Blood levels are stable at 2-3 days. Rotigotine is metabolized in the liver then excreted mostly through the kidneys.

So far, only one study has been published assessing the use of this drug for RLS . This study randomized subjects with moderate to severe RLS to three patch doses; 2, 4 and 8 mg daily for one week. All doses improved RLS symptoms with the 8 mg dose being the most effective.

Side effects were mild with nausea, headache and skin irritation being the more common problems. As this was a fixed dose study without any titration, the correct dosing and titration of this drug has yet to be determined. Several clinical trials are in progress that should answer these questions and its long-term effectiveness and safety for RLS.

(3) Analgesic (pain-killing) Medications - Opiates/Narcotics
These medications are very helpful for treating RLS. Many patients