I have read so many posts in the last few days and weeks and the contents do frighten me.
As I said previously, I have suffered from RLS 15-20 years and it is getting worse. To start with I was prescribed 1x0.088 mg Pramipexole. That worked for a while, but then had to be increased to 2 x 0.088mg. about six months ago,again it stopped working and was increased to 3 x 0,088mg a day. This was all before I joined your forum. What I read on your pages is so so frightening, especially about augmentation. I therefore decided to write to my GP and I think I may have upset him a bit. He said that he did a presentation to his peers about RLS, so he does know something about it. He was, however, not aware that ferritin levels do influence RLS.
He now has prescribed me Gabapentin, first 200 mg a day, which did absolutely nothing, but has now increased it to 2 x 200 mg twice a day, 12 hours apart. This seems to work a bit better and I will stay on this for a while. What worries me is the dosage of Pramipexole. Should I be reducing the dosage?
GP agreed blood test and results are: FBC 14.2 and Ferritin 106, both classed as normal.
Has anybody got any thoughts. At the moment it seems to work most nights. I have one bad night in five, which I consider brilliant compared with the hell I went through before. Still cannot sit down for long during the day though.
I would welcome your comments
Written by
riaward
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I am so sorry you are experiencing this, never fear, there are lots of horror stories but plenty getting help too. I am too tired to give much info but if you been reading here you should know that there are several drug options open, if you are in the uK try readifng the NICE guidelines and familiarise yourself with treatment pathways. Some info on drugs here:
Also one last thing - if he doesn't understand irons role in RLS then the only thing he knows is F**k all!
Perhaps your GP also doesn't know that it can take up to 4 weeks for gabapentin to start working. In addition you are probably not on a sufficient dose as yet.
here's a link to the NICE prescribing guidance for gabapentin for RLS.
I would be careful what you say to this GP, they obviously pride themselves on knowing about RLS but don't appear to be familiar with the UK national guidance on RLS, which you can find here
From his stance-- he felt he knew enough about RLS to actually lecture his peers about the subject. That took guts to do, considering the " unpopularity" of the subject.
And then you come along and show him up as knowing "nutting"
As I say- difficult.🧐
You are left with a trust issue- in his actual expertise.
Gabapentin takes a few weeks to really get active, so there is going to be a delay in its results.
Do not increase the Pramipexol, and if possible ,actually decrease it. There are a zillion posts on that on this site.
It won't get better for a long time.
Take ferrous bisglycinate - gentle iron -every second night with vit C, on empty stomach. To get the ferritin up to over 200.
Only about 50% of sufferers benefit from higher ferritin.
Look at possible triggers, both meds and foods. Keep a food diary to spot possible triggers.
I've only ever been on gabapentin, but started and ( mostly) remain on 3x300mg. Luckily, they took effect within days, not weeks. You'll work out the best times to take them, mine are morning, evening and bedtime, as my rls is constant.
400mg sounds a very light dose to be taking, but I would assume that will increase when you finish your other medication. All the best x
Thanks for your comments. I do feel the difference already and my RLS seems to be under control. Can I just ask you a question about taking Gabapentin during the day. Do you get any side effects like drowsiness or light headed ness
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Going from no meds to pramipexole
Pramipexole to Pregabalin 
Tried going privately to see a neurologist
Going totally demented
Where do I go from here?
