Hi I have yet another appointment with my neurologist in the next few weeks
Can’t make my mind up what to say
I’ve been taking pramipexole (yet again) even though I told myself I would never touch this drug again!!
My regime has been 0.088mg pramipexole at night and75mg Pregabalin at night too. This was effective for about 4 to 6 weeks and then stopped being effective ( augmentation!} my. Rls has come back but not as drastic as it used to be but my insomnia is bad.
I know beforehand the neurologist will want to increase the pramipexole but I’m reluctant because I’ve been down this path before and it’s hell coming off this drug sh e has said before that I’ve run out of options!
I’m between the devil and the deep blue sea!!
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Hoochybaby
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Hi again, I can see you're still continuing to have problems. I'm so sorry.
I can only offer some ideas you could consider .
It seems each time you try something, it works for a while, then stops working.
Combination therapy i.e. any two of dopamine agonist, (DA), gabapentinoid or opioid does work for some people.
It does seem to me that the doses you've taken tend to be a little on the low side. I do note you took 300mg pregabalin at one time but now appear to be only taking 75 mg.
Obviously, if you have problems with a higher dose then this is an issue.
Similarly, 88mcg pramipexole is the lowest dose. NOTE that it ceasing to work is "loss of efficacy". This is not the same as augmentation. Unfortunately, augmentation usually follows an increase in dose.
However please note that augmentation rates for pramipexole only increase significantly for doses above 180mcg (0.25 mg salt).
In addition, note that pramipexole is the worst DA for augmentation, ropinirole less and rotigotine least. If augmentation is a potential issue, why take the worst DA?
Really, you seem to be suffering "refractory" RLS and in this case may require a 'second line" treatment option, the DAs and gabapentinoids being first line options.
This usually means an opioid.
I see you've tried codeine before. This is only a weak opiod and really still only a first line option.
It seems your neurologist is trying to be helpful, but has come to the limits of her knowledge and/or confidence in prescribing. Perhaps a tentative (very diplomatic) suggestion to her that she find out more or seek the advice of a colleague.
The opioids typically prescribed for refractory RLS are targinact, (oxycodone), methadone or more recently buprenorphine.
I also wonder if something else is going on with you. I see you wrote that your ferritin appeared to be OK at 224. However, that may be misleading as ferritin values can be skewed up and this might be a sign of inflammation.
Unless you have obvious symptoms of something, you might not know this unless you had a blood test for inflammatory "markers".
Inflammation is a major factor in RLS second to iron.
Quite often in RLS bowel inflammation is involved and this may be dietary in origin. It could be some other inflammatory condition or general inflammation.
Diet may help as could antioxidant supplements e.g celery juice.
After that, I'm running out of ideas, although stress may be a factor. Stress can make RLS worse.
Be aware that stress is not always just psychological in origin and even when it is, it always leads to a physiological response. This can be a vicious circle which you may not be aware of. The same response can be triggered by both psychological and physical stressors. This includes such things as the insomnia of RLS. Psychological remedies may help alleviate stress, but also it helps to identify "stressors" and if possible avoid them.
I hope this helps.
I hope your neurologist is open to discussion and is able to recognise her limitations.
Thanks Manerva for your reply I took on board your suggestion one thing I have suffered from all my life is stress and I had a stressful job when I was working and it’s followed me into retirement I will have to try to work at itI do know that Pramipexole does work for me but I will have to keep the dosage low as possible with possibly a combination of an opioid and or pregabalin
As regards the ferritin levels my neurologist said she was happy with my level when I had my blood test so I think we can rule that out
Diet is one thing I find difficult like many people although I do try to eat healthy ie plenty of fruit and veg I don’t drink alcohol and try to limit coffee and take decaf tea
My understanding is that if you have inflammation somewhere in your body then your ferritin level goes up. This is not an effect of the inflammation on the test process but a real increase in ferritin concentration which is then correctly detected by the test.
Now if inflammation has been found to make the RLS worse but also to increase ferritin then we have two factors working in opposite directions.
Its said that some people need their ferritin level to be over 300 before they get relief so perhaps the best way to proceed is to raise the ferritin to greater than 350 just to be sure the relief is not just one more step away. It would be a shame to find out that just a little more ferritin would have rescued you.
Just from the point of trying everything that is easy, what about eliminating most of the usual food suspects for a couple of months. You soon get used to not eating such a vast array of foods that we have access to and you might even get used to my favorite meal of Bok Choy with eggs and rice. With decaf coffee of course.
If you are not augmenting then I think it's reasonable to expect that avoiding any food trigger will show an improvement in your RLS and you might be able to reduce the drugs a bit too see what happens.
I only know what I read on this site two days ago, it was an article from a UK news paper. You should be able to find it if you are a bit more it literate than me! Apparently this person had a chip inserted for a painful back and his or her R LS disappeared. My GP also mentioned it as a last resort. I am asking for a referral tomorrow. Can’t take much more of this. I will try to find it for you.
I have found the article, I had sent it to my daughter, so will have to get her to send it to this site.As I said I am not to good with I T! Hang in there, I would like to know what you think,also what your doctor thinks
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Neurologist appointment 
Neurologist appointment tomorrow
First post from a 40 year RLS sufferer 
Neurologist for RLS- frustrated 
