So I finally got my blood results. Dr hadn’t added transferrin saturation to the test but I managed to get the nurse to add it when I went in for the bloods.
Ferritin 91
Transferrin saturation 19.9
Now on 400mg of iron daily & a referral to movement clinic. Are there likely to be options to help me get off the ropinerole? Garbapentin? Topamax? Which would be better, or am I trading one horrific drug for another? I can’t see the iron tablets curing me.
No Sleep 1969. You may need to raise your ferritin level; mine is now close to 350. I also take oral iron 3xday. Brica
Have you reached 350 by taking oral iron? That is a contrast to the general experts opinion that you won't live long enough to do that without an intravenous infusion.
Did you do any of the "trick" things like crunching the iron tablet with vitamin C as you swallow it or taking the iron only every second day? What dosage did you use.
I’m on 200mg twice daily. I’m taking vitamin c with it, only been on it a few days.
Hi there. I’ve been on Ropinirole for many years and it’s no longer working. Based on advice from members of the forum, I started taking Gabapentin 900mg a day, in separate doses of 300mg. I haven’t started reducing Ropinirole yet because I don’t have another prescription for Gabapentin. I’m trying to find a doctor that understands RLS (lol) and will prescribe it for me. I’m sure you’ll get lots of great advice here 😊
I was in the almost same position. I had manage with the help of my GP to control my rls with pramipexole. At first I gradually had to increase it until I was taking the maximum dose. My feet and lower legs swelled and as the rls had improved we decided to reduce the dose and I got down to the minimum dose and the rls continued to be manageable for several years the about 2/3 years ago it returned with s vengeance. I was distraught and the nightmare was back. I was desperate and eventually my blood was taken and they found a difficiency in haemaglobin and ferritin so after a few tests to try and find a reason for it they commenced me on ferrous sulphate and now after a few weeks to feel better. So the situation now is somewhat improved. I have had just minimal rls symptoms for about 3 weeks now I still have some episodes but not the severity that I have had in the past. I am nervous in case it returns but I feel ok at the moment. I am having blood tests soon so it will be interesting to find out the results.
Thanks for the response. I certainly understand what you’re going through. Just wondering if you’re still on pramipexole. I found Ropinirole was no longer working recently. I’m currently trying to switch over to Gabapentin. I also have low hemoglobin and most likely ferritin. I’ll have that checked. So happy you’re getting some relief. It’s such a debilitating disease. I hate having to worry about how severe it will be every night. I hope your symptoms continue to improve 😊
I am weaning myself off pramipexole next week I am going down to 3 tablets I see my GP after my bloods are done on the 12th so will discuss with her what to do. I am hoping the magnesium and ferrous sulphate continue to help I am already taking gabapenton for pain for osteo arthritis.
Best of luck to you!
Where do you live? Which is the closest large metropolitan area?
I’m in the UK, South Wales.
I sent another private message. I think the list has been updated a bit since the last version. How are you getting on?
Blood test iron results
Iron Bisglycinate versus Liquid Ferrous Sulfate 
Blood results
Iron Readings
