new to forum

[sarahpatto]

Hello,
I have had RLS for years and it runs in my family though no one has it as severely as I do. It has ebbed and flowed over the years but last March it took a sudden turn for the worse and I suddenly couldn't cope with sleepless nights any more and began to dread going to bed. I started taking Ropinerole and it worked a treat for about 2 weeks, then I started to have brief episodes of RL that were much more severe than what I'd experienced before. The discomfort was ratcheted up though the episodes didn't last all night. Crazy! Doctor prescribed .5 of Ropinerole and that's when I discovered RLS Foundation website and became scared that I was now on a treadmill of more and more medication. (And still suffering from RLS - the higher dosage of Ropinerole did not eliminate the RL but instead has the effect of making the bouts particularly vicious.) So, I have stopped taking it for now. Am on day two of sleeplessness. What next? I guess I need to find a neurologist or someone who specializes in RLS.

[ViewsAskew]

Glad you found us and that you were able to determine to stop that treadmill!

Do you have any RLS Quality Care Centers anywhere close to you?

[badnights]

I am impressed at your foresight, knowing that you had to stop the ropinirole.

You have two choices, which you can pursue both at the same time. Try to educate your current doctor about augmentation (there are some pamphlets on it on the Foundation;s website at https://www.rls.org/member-portal/publications) , and look for a new doctor (there are some suggestions about how to do that in a Nightwalkers article (Nightwalkers, Spring 2018, p12)

See my signature link for how to access Foundation publications.

[sarahpatto]

Thank you for the welcome and your replies. I have referrals out to 3 neurologists (we live in a rural area so I'll have to travel). Immersing myself in the information on this website (oxalics? must I?), Strange to have gone from someone with "normal" sleeping issues to terrible in such a short time. Also strange that I have tested for mild anemia my whole life but am now showing that my iron levels are normal.

[Polar Bear]

You mention that your iron levels are normal.
However, you should have your blood ferritin serum checked. This isn't done unless specifically requested. Normal is considered 20+ but an RLS sufferer needs levels of around 100. It's important that you check this as the lower the level the more likely your symptoms are to be problematic.

[sarahpatto]

Hello,The RLS journey continues. I tried gabepentin and did not notice a difference in my symptoms so now I'm on pregabalin which does work for me. My question is this: I have stumbled upon a hemotologist who doesn't seem to know much about RLS, but who is very willing to prescribe Injectafer. My serum ferratin levels are indeed low - 22 at one test and 55 at another so I'm hopeful that the Injectafer will help. Should I try to wean myself off of the Pregabalin before I get the iron injection? Even though I'm only taking 75 mg of the Pregabalin when I tried to cut the dose down my symptoms came back and I chickened out. How will I be able to tell if the iron infusion is working if I'm still on the Pregabalin when I get it?

[badnights]

I would suggest not weaning yourself off.

I could tell I was getting better simply from how I felt. If your symptoms are not 100% covered by the pregabalin, then you too should notice an improvement at some point, and can reduce the dose when you notice that.

If you reduce beforehand, you will have to wait til you get the infusion, then 4-6 weeks after the infusion, for the effects of the infusion to show up (and for some people, there aren't any effects) - so reducing beforehand is probably not a good idea.