off Pramipexole

[RestlessMe]

It took me 6 months to come off Pramipexole very slowly! Breast cancer interrupted things and I paused my reduction programme whilst I had a mastectomy.

After surgery I had some respite from my restless legs as my ferretin levels increased which is normal after surgery. They are dropping back now. I have more blood tests due in a few weeks. My GP has been amazing. He sees me regularly and is giving me regular blood test to check my blood levels after surgery.

Before I came off the final doses of pramipexole the doctor put me on Sytner which is a liquid Iron and touch wood, fingers crossed my restless legs are under control. They have not gone completely and I have episodes some mornings, and very occasionally early evening. But I can cope with that.

I still don’t know whether my ferritin levels have got further to fall following surgery, but I will know more at the next set of blood tests.

Downside is that the sytner is apparently very expensive. I am still on a month by month trial dose but hoping, when I see the doctor next, he’ll put me on repeat prescription.

I don’t know whether it’s the fact that I take the liquid iron three times a day which makes the difference. But what I do know is that my symptoms were increasing as my ferritin levels dropped, but when I started taking the Sytner things improved at the same time tgat I came fully off the Pramipexole.

[RestlessMe]

I still take a codeine tablet every night but will address that at some point

[SueJohnson]

That's terrific !!! So glad for you! Normally iron is not given more than once a day because that stimulates the release of hepcidin which then prevents you from absorbing iron. However it is working for you so that is great. Perhaps at some future date since it is so expensive you could try taking it twice a day and then if that works once a day. Also it is usually not necessary to have a prescription to get liquid iron. I couldn't find Sytner so I don't know how much elemental iron it has, but in the future if you want me to recommend an OTC one with the same elemental iron I would be glad to. But for now don't change anything - it is working.

[Munroist in reply to SueJohnson]

I’m guessing that this might be what RestlessMe Is referring to? The dosage and liquid form seem consistent

netdoctor.co.uk/medicines/d...

[DicCarlson in reply to Munroist]

Very interesting supplement and good info on timing and dosing of iron supplements.

[Simkin]

Well done you! I went through all the same cancer treatment as you.My legs were DREADFUL when having chemo & the doctors said chemo drugs make RLS worse.

Good luck with it all. Simkin

[SueJohnson]

On your iron take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron to slowly raise your ferritin. Ask for a new blood test after 3 months.

[RestlessMe in reply to SueJohnson]

Thanka Sue, I have to take calcium to counteract the hormone therapy tablets so that’s useful info - thank you.

[Joolsg]

That is fantastic news. Clearly you're someone who responds well to iron.Hopefully it will continue. The codeine will also be helping.