About to have my first Ferritin infusion

[Sappington]

Hello from Tasmania, Australia. Briefly, I have had RLS for over 40 years. I am taking 2mg of Pramipexole and 1200 mg of Gabapentin per night which enables me to get a few hours of reasonable sleep . I also have to be careful not to sit for any length of time during the day or the RLS crank up.

Tomorrow afternoon I am having my first infusion of Ferritin prescribed by my neuoroligist. None of my previous neurologists have suggested this treatment option. I am so wanting for it to work for me.

My question is: What do I do about the Pramipexole and Gabapentin? I obviously cannot stop taking them immediately but what do I do ?

Any advice from people who have been through this experience would be so gratefully received.

Thank you

Ian

[SueJohnson]

You don't need to do anything different to have the infusion.

[Sappington in reply to SueJohnson]

Thanks Sue. I am more concerned with after the infusion and hiw I manage my withdrawal fro my medication should the ferritin stop the RLS effects

[SueJohnson in reply to Sappington]

A month ago I told you how to come off the pramipexole. I can repeat it if you'd like. The infusion will help you come off the pramipexole but it is extremely unlikely to stop the RLS while you are on the pramipexole and suffering augmentation. So don't use that to decide if the raised ferritin is helping you. After you are off the pramipexole and the withdrawal symptoms have settled, then you can see if your RLS is gone.

If not then increase the gabapentin by 100 mg every couple of days until you find the dose that works for you and take it the way I described a month ago. Again I can repeat it if you'd like.

If so, you need to reduce the gabapentin very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks. If you do so you will have no withdrawal effects.

What was your ferritin by the way?

Don't expect the infusion to have an immediate effect by the way. It can take from 6 to 8 weeks for maximum effectiveness. However you shouldn't wait that long before starting to reduce your pramipexole. You have a long ways to go - roughly 32 weeks.

[Swankee]

Hi. I would like to support what Sue said about coming off pramipexole. Slow but worth it in the end. Only once you are off it can you look at something more appropriate for dealing with RLS. I am slowly coming off Pramipexole, spending a lot of time watching TV in the middle of the night but it will be worth it. Its taken 3 months to gradually reduce my amount. Sitting during the day is hard but again focus on coming off Pramipexole and then you can start again with something much better.

[Fingerandus in reply to Swankee]

i must tell you all i have been free of restless legs in bed i still have sleep issues but thats just me i take pramipexole 0.25 mg 1 at nite but the legs have been absent since i came off gluten, potatoes and tomatoes [cause inflammation]i am now 6 weeks maybe into my new diet i am a celliac i am cautious but pleased ive also had acupuncture 3 weeks sessions i do get restless arms but it goes with a paracetamol and a walk around my diet wont take full affect yet but am hoping to ween off sifrol eventually otherwise happy bedtime is all i ask im happy

[Debra626]

Hi. I received my iron infusion Dec. 15 and started tapering off pramipexole mid Feb. I still had withdrawal, but I recommend waiting to stop the prami until your iron has time to reach your brain. As others have said, it's 6-8 weeks minimum.

I didn't really have problems when I was tapering off the prami, but once I took the final dose, the first few nights were awful. Just hang in there. It gets better. It's tempting when you've gone 2 nights without sleep to return to the prami, but try not to. It eases. I also had started gabapentin (300 mg US dose), and later added another 300 mg. With the iron infusion, the gabapentin has been managing the RLS. Depression remains. My brain is missing the extra dopamine prami provided. Ultimately, I hope a small dose of bupropion gets me over the hump while my brain heals. Good luck!