RLS getting worse

[boomerbabybarb]

Hello from Idaho! I'm new to the group and I am happy to find a site with so much activity and feedback. I look forward to chatting with you. My RLS has been with me most of my 70 years. Lately I have noticed an increase in symptoms and it's also more difficult to get it under control. To compound the problem I have arthritis which makes it painful to move and with RLS impossible not to. Currently I take Mirapex and at bedtime I also take Gabapentin. Up until about 6 months ago it was working for me. Not so much anymore. Any thoughts or comments will be welcome.

[Polar Bear]

Welcome to our discussion board.
I wonder how long you have been taking Mirapex and has your dosage ever been increased. Mirapex is a DA medication and when they work they are great. Unfortunately they are also known to often cause augmentation which is when the medication itself actually starts to make the symptoms worse. If it is augmentation, then Increasing the dosage often helps for a while but eventually the symptoms will again get harder to control. Often with augmentation the symptoms will start to appear in other parts of the body, especially in the arms.
It can be confused with wondering if it is the RLS getting worse .... which it could be, but with Mirapex we tend to consider augmentation especially if the symptoms are coming earlier in the day, are more severe etc.

There are other medications to try and indeed Gabapentin is one of these.
Please tell us a little more, how long have you been taking Mirapex, what is your dosage. What dosage is your Gabapentin.
Have you previously tried other medications.

Have you started taking any other new medication which could aggravate RLS, sometimes an antidepressant med can annoy RLS.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as mirapex. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

[boomerbabybarb]

Thanks for the info Polar Bear. I take .5 mg Mirapex during the day as needed which can mean 4 times or more depending on what I'm doing. If a movie is planned or anything where I need to sit still I take more. At bedtime I take 1.5 mg. I have been on Mirapex for maybe 8 years, the bedtime dose and addition of Gabapentin (300 mg) began about 4 years ago. My iron levels are checked along with other tests about every 6 months. I read about augmentation and worry this might be what is happening with me. At least part of it. My hands show changes especially jerking on the mouse when I play games online. I can blame my bad scores on it. LOL In the past I have taken drug holidays. When I was on Sinamet I built up a tolerance to it and drug holidays were the only option I had at the time. I don't like increasing the dose because it always comes back to bite me and I take more and more to get the same result. The drug holiday is pure hell though and I would hate to think that is my option again. Any ideas?

[ViewsAskew]

At this point, sounds like you've augmented twice. Some doctors believe that once this happens, you should stay off the DAs forever. A drug holiday may not be enough.

Another alternative would be to find another drug that works for you that you can use for a month or so, then alternate between it and a DA. If you don't take the DA all the time, it can prevent augmentation for a very long time. I have been doing this for years. Whether you take a DA for a month, then a week off, or alternative 5 days, then off on weekends, of whatever you and your doc work out - it can be very effective.

[Polar Bear]

Your mirapex daily intake is quite high.

When you say that your iron levels are checked every 6 months you need to check if this is a standard blood test, or is it actually your ferritin level which is very different.