Getting Worse?? : I'm 60 and have had... - Restless Legs Syn...

Restless Legs Syndrome

15,410 members9,783 posts

Getting Worse??

Katti703
Katti703

I'm 60 and have had RLS for what seems to be forever. I was diagnosed when I had a sleep test close to 20 years ago. I'm on Mirapex (Pramipexole)

50 Mg. I sometimes think that it's getting worse over the years. It's this happening to anyone else? I think sitting on hard surfaces can make it worse too so I try to avoid sitting on wooden benches, chairs etc. I also wonder about shoes... I'm 240lbs. and had Bariatric surgery almost 20 years ago and am keeping off a 250lb weight loss. Looking for new ways to help make them better.

19 Replies
oldestnewest

Hi Katti

Are you sure you have the correct dose written down? The dose for RLS starts at 0.125mg.

If you’ve been on it for 20 years you could well be suffering from Augmentation- every day someone asks for help because their mirapex/Ropinirole is no longer working and their RLS is getting worse.

Put Augmentation in the search box above and you will see lots of posts.

Interesting that your RLS started at the same time you had bariatric surgery- that is very common as the surgery stops the absorption of iron and iron deficiency leads to RLS.

Anne-jende had 3 iron infusions in the USA and her RLS has now gone. First though, you’ll need to see your doctor to discuss your dose and getting off mirapex if your symptoms are getting worse .

Jools

Katti703
Katti703 in reply to Joolsg

I'm on .50mg per eve for sure. Guess I forgot the decimal point! 😁

Parminter
Parminter in reply to Katti703

The maximum dose now recommended is 0.25mg, and even on that, you will augment.

You need to find an alternative, or to lower the dose and add something else.

You need to check your ferritin levels, they may be very low. Then, with your history, you are a candidate for IV iron infusions.

Kathyp703
Kathyp703 in reply to Parminter

Just had my yearly bloodwork done and my iron levels are good, but a tad on the low side. What other alternatives are there to Mirapex?

Parminter
Parminter in reply to Kathyp703

First, may I ask what your ferritin level is? Do you have the number?

Second, pramipexole does the job just beautifully, like magic, while making things steadily worse, sometimes quite rapidly worse, so it is full of traps. (Which most of us here know well).

The ideal is to get off a fast-acting dopamine agonist, but that is very hard indeed. Some experts say to slowly reduce pramipexole while adding rotigotine (Neupro patch) which is also a dopamine agonist but which is long-acting and which causes augmentation very much more slowly. Possibly because your brain does not get a nice fat gob of dopamine which makes it crave more. like a nice chocolate cake. (Chocolate is a no-no, how devastating is that?).

It is almost a certainty that you have augmented if you are on such a high dose. If you started at 0.125, and then increased your med in about 6 months or a year, then again, you are augmented.

Doctor Buchfuhrer would use a strong opioid, in low doses, to help get you off pramipexole. HIs choice would be methadone, which sounds scary but which is not. It is taken in doses of 5mg to 10mg and it works beautifully. I have it in my cupboard for disasters.

If you are able to get your DA to zero, you will go back to baseline, where you were when you started the med.

Another alternative is to reduce pramipexole while adding an alpha-2-delta ligand, one of which is gabapentin. But the side-effects of these can include weight gain and depression, which is not fun. (There is no free lunch in this condition!).

If you have a sleep problem, as many of us do, then gabapentin or a similar drug such as Horizant may be a blessing. Pramipexole does not help sleep in any way, in fact it hinders it. Double whammy.

Many people on this site do a lot of juggling of meds, using several at low doses in order to avoid side-effects and augmentation. Search for Involuntary Dancer's entries, which are many and knowledgeable.

I cannot post picures in replies, but later I will post screenshots on coping with augmentation. I will title it 'Doctor Buchfuhrer's Augmentation Chart' or something similar.

Katti703
Katti703 in reply to Parminter

My Ferritin was tested a month ago and is 28.

Parminter
Parminter in reply to Katti703

28 is in the bad to ghastly range for RLS. You must get it up to 75, minimum, before you do anything else.

Katti703
Katti703 in reply to Parminter

How can I raise it?

Parminter
Parminter in reply to Katti703

You could eat a lot of liver and steak, but that might take too long. If you can afford it, do it anyway. LIver is best, in the evening.

The general advice for oral iron supplementation is 325mg Ferrous Sulfate, taken with 100mg Vitamin C (or some other acidic substance like an orange or two), on an empty stomach two hours after the last meal of the day.

Iron is notoriously difficult to absorb, and even more difficult to get to the brain, which is where we want it. It meanders around through the bone marrow and the liver and yadayadayada, then is broken down in the spleen and wanders around again, finally giving 0.5% to the brain. Nature does not care that we have RLS, it just wants to survive.

So, the oral way could be very slow, taking months and months.

The best way, if you can get it, is to have an intravenous iron infusion. The 'gold standard' there is an infusion, in two 500mg lots, of Ferric Carboxymaltose spaced a five days apart.

There are other IV iron preparations that will also work, but FCM has the best chance of delivering a wodge of iron to your brain. It, too, will wander about a bit, first filling up the bone marrow, but then you should get some good iron into the parts of the brain where we lack it. The full effect may not be felt for a few weeks, but you could feel a lot better almost immediately.

All of this must be done through your doctor.

The iron may reduce or even resolve your symptoms for some months, even a year or more. Then, as we are unable to store iron in the brain, it would have to be repeated.

You may find that you are able to reduce your other meds as your brain at last gets what it needs.

I will try to find, and post, a link for your doctor a little later.

Parminter
Parminter in reply to Parminter

rls.org/file/understanding-...

If you're overweight it indicates that you're eating too many carbs. That's probably also a cause of rls (along possibly with other triggers which may become obvious, once the carbs are reduced). The main sources of carbs are sugar, cookies, cakes, candies, deep fried food.

I'm 6" tall and was 170lbs when I decided to cut down on carbs. I've now eliminated my rls and my weight has dropped to 163lbs

niabxxx
niabxxx in reply to Eryl

Eating carbs does not cause restless leg syndrome.

Parminter
Parminter in reply to Eryl

Eryl, I weigh about 110 pounds. I do not eat refined carbs of any sort, ever. My diet is as optimal as I can make it. I have severe restless legs.

So, while there are dietary triggers, they are triggers that worsen the condition temporarily, they do not cause it.

Eryl
Eryl in reply to Eryl

Along with avoiding potassium sorbate preservative, lowering my carbs has virtually eliminated my rls. Do you have an explanation?

LotteM
LotteM in reply to Eryl

Eryl, yes, I do: waad (we are all different). Unfortunately, in a way.

And, whether for you the carbs are a cause or a trigger, is semantics. I am so glad, however, that you found your cause/trigger.

Eryl
Eryl in reply to Eryl

The science behind it. ( I only found this after I had found it to work in practice) Omega3 fatty acids also help strengthen cell walls, which would protect nerve cells from the effect of triggers. My diet happens to contain high levels of omega3 to deal with my high blood pressure.

whoami.sciencemuseum.org.uk...

Katti703
Katti703 in reply to Eryl

I've found that using an Omega 3 supplement works wonders on my ADHD, and I take it in the morning. Never thought of trying it for RLS. It's worth a try! I'll take an extra dose an hour before bed to see... 😁

Eryl
Eryl in reply to Katti703

While I'm not suggesting it's cure. It may be helping, in combination with the other things I've done, to reduce my susceptibility.

Try apple cider vinegar (organic only) 1 tsp and 1tsp organic honey with a half cup of water. it works miracles

You may also like...