What meds are best

[Fenham123]

Hi I've never taken any medication for my rls but having to wait another 7 weeks for another blood test for my thyroid as it's off the chart at the moment but I've suffered over 20 years and I can't cope much longer what treatment do you think is best

[Elffindoe]

I'll give a link below to some detailed information, but have to also add, your RLS may be associated with your thyroid dysfunction.

I'll also give a potted summary.

First however, you need to be aware not not many doctors are really knowledgeable about RLS, so you need to know as much as you can yourself before consulting a doctor about it.

I stress as I hear almost daily of people being mistreated and consequently harmed by the actions of ignorant doctors.

Here's the summary.

The main elements of the management of RLS are

1) Iron therapy as appropriate. Thos requires blood tests for serum iron, transferrin saturation, ferritin and haemoglobin.

If there is any problem with these your Dr should let you know.

If your Dr should say these are all normal, then it is OK to start iron therapy for your RLS.

Find out your ferritin result

a) if it's under 75 then start taking an oral iron supplement

b) if it's between 76 and 100 you may need an IV iron infusion.

For somebody with RLS it's desirable to have a ferritin level of at least 100 and ideally over 200.

Do NOT take a prescription iron.

2) Identify and if possible eliminate anything which might be making your RLS worse.

This could be underlying health conditions such as iron deficiency or B12 defiviency anaemia, thyroid dysfunction or diabetes.

It is most often however that medications may be making RLS worse. This includes most antidepressants, sedating antihistamines (e.g. neuroleptics, some anti-emetics, cough medicines, anti-allergy meds and sleeping aids), proton pump and H2 inhibitor antacids, dopamine antagonist anti-emetics, beta blockers plus others.

Alcohol, sugar, nicotine, caffeine and other stimulants can worsen RLS.

3) In addition if your RLS is severe you may need a medication.

The first medications recommended for RLS are either gabapentin, pregabalin or, of you live in the US, gabapentin enacarbil.

If your Dr advises pramipexole, ropinirole or rotigotine do not accept these. They are no longer recommended as a first treatment.

Here's the link I promised.

mayoclinicproceedings.org/a...

I now advise new members to complete their profile by indicating which country they live in. This helps give country-specific information.

This is just the tip of the iceberg in terms of the information that can best help you with your RLS. You're unlikely to get much from a Dr.

If you have further queries, don't hesitate to ask.

[Graham3196 in reply to Elffindoe]

I believe that a person with RLS should try the fastest treatments as soon as possible. Why ruin another year of your life experimenting with drugs when there is quite a high chance that you can get very quick relief with an Intra Venous iron infusion? I suggest that as soon they are diagnosed they get blood tests and if their iron is less than about 300 then they should get an infusion to take them up to 350. One doctor who is highly regarded in the field is Doctor Buchfuhrer in the US. He has suggested that more than half RLS patients get some improvement by raising their ferritin to 350 and that perhaps 25% of RLS patients get a very high level of relief, approaching full relief.

You usually need to wait for up to 12 weeks to get the full benefit of the infusion although some patients get immediate relief.

There are probably some things you can do while you're waiting. I would suggest that on day one you stop lactose, gluten, wheat, coffee and tea. Just to see what happens. After all it costs almost nothing to give up these things and you might find that you don't need to do anything else.

[LotteM in reply to Graham3196]

The thing is, Graham, it is often very difficult to nearly impossible to get a doctor supporting this notion of the importance of iron for RLS and hence prescribing an iron infusion. Hence Elffindoe's advice (I assume) to assess iron levels in blood first and then start taking otc iron orally. That is something almost everybody can do.

[Elffindoe in reply to Graham3196]

Good advice overall. Everybody with RLS should undertake iron tberapy.

Some renowned RLS experts such as Dr B and Dr W promote IV iron for RLS, (amongst other things).

I don't think it should be assumed that everybody should have IV iron.

A recent study by Dr W showed IV infusion is successful for 60% of people. That still leaves 40% unsuccessful.

Significant numbers of people may benefit at least from taking oral iron.

As Lotte days, IV iron is not accepted as a first line treatment for RLS. Recommendations from RLS organisations recommend it for ferritin levels between 76 and 100.

Hence it may be very difficult to persuade anybody to prescribe IV iron.

Furthermore, this is not a one off cure. Dr W's study showed it works for 24 weeks. Then another infusion is needed, then another, then another and so on.

In some cases it might be best to try the fastest treatments as soon as possible. Iron isn't particularly fast but might be agood example.

However generally speaking it isn't necessarily a good idea, mainly because of long term consequences.

The fastest, most immediately effective treatment for RLS is levodopa. It can work in 15 minutes. It's a lousy solution.

It partly depends on life expectancy. This may mean taking a quick fix with long term complications is OK if the period of time in which the complication is likely to occurs is less than life expectancy. So for somebody aged 80 you might recommend a DA or an opiate. For somebody middle aged, a DA is lousy option.

That's one of the advantages of being older. Having no history of blood pressure, high cholesterol etc, I feel I can now say, I don't care what I eat, it's not going to kill me.

[SueJohnson in reply to Elffindoe]

life expectancy at age 80 years for United Kingdom was 9.09 years. I would guess augmentation would occur long before this.

[Elffindoe in reply to SueJohnson]

Hi Sue.

That's a little misleading. Statistics only show what generally happens in populations. They don't reflect what happens with individuals.

It may be that the mean or modal life expectancy is 9 years for somebody aged 80.

However it only applies to people already aged 80.

What if you know for a fact you'll never reach 80?

This could be true of the expectancy of any person at any age.

What if you know for a fact that your remaining time is less than the time taken for complications to occur? No matter your age.

Everybody's different in respect of their life expectancy and their unique situation. The decision to embark on possibly damaging treatments is therefore a personal and individual decision.

It's sad to think.that somebody might be prevented from getting quick, but short term benefit from something that has long term complications when their longer survival is even dubious.

Ultimately, the decision is about what's going to offer the best quality of life in relation the best length of life you expect.

The worst scenario is where drugs which could potentially prolong your life are so toxic they make that life not worth living.

[SueJohnson in reply to Elffindoe]

I agree statistics don't apply to individuals. I guess I was reacting to your statement "So for somebody aged 80 you might recommend a DA ". (I'm 81) Instead you should have stuck with "What if you know for a fact that your remaining time is less than the time taken for complications to occur? No matter your age." I would agree with that. Except even then how do you know the time taken for complications to occur? Certainly that might be if your remaining time was less than say 6 months. But what about a year? or 2 years?

[Elffindoe in reply to SueJohnson]

You've discovered some of my weaknesses, I write so much (weakness #1) that I write as minimal as possible (weakness #2)

"somebody aged 80" is so much shorter than "What if you know for a fact that your remaining time is less than the time taken for complications to occur? No matter your age"

How long do you know how long it will take for complications to occur. Well true you can't definitely know, but that's where the statistics help.

e.g. a dose of pramipexole gives a 7% chance of augmentation, year on year. Hence the risk of it after one year is 7%, 14% after 2, 70% after 10 and 100% after 15.

When it comes to making a decision, it comes down to (yet again) each individual making their own (hopefully informed ) guess.

We make these decisions every day, if we think the chance of harm is low, we go for it, if it's high we hesitate.

So if we know have only a year to live a the chance of augmentation might be acceptable If we have ten years, it doesn't look so good. It's a matter of dgree, there no fixed "threshold".

Nobody can ever be sure 100% about any of these things. No doctor ever tells you something like "you're going to die on January 5th". - and you do!

There are many factors that people use when making decisions the statistical chance of complications and life expectancy are just.

Other strong factors are personal preference and immediacy.

I'd like to think eveyrone can make their own best decisions for themselves and should be allowed to do that. I thinkthat being fully informed can help that, but if somebody chooses to take a dopamaine agonist or take a potentially addictive drug then I accept it's their choose,m whether I think it bad or not.

[SueJohnson in reply to Elffindoe]

For your weakness #1, I have a suggestion. You often repeat the same things in multiple posts. Assuming you have a word processing program, put them in a file and then you can just copy and paste, adding other things as needed or tailoring them to the questioner.

[Elffindoe in reply to SueJohnson]

Thanks Sue, I like to give personalsed reples amd it keeps me occupied.