No relief in RLS

[Mycatis6]

Having got much worse I have taken almost 3 months to get off Pramipexole and my Ferritin levels have come up from 35 to 150 yet still I have no relief in RLS day and night.

I saw my GP who has referred me to a neurologist who I am seeing next week, My questions are what should my ferritin level be regards RLS and as this is the first time I have had it none stop for over 9 months can I not expect respites now. I still think for me it is drug induced I take Natecal D3 600mgs BD, Bisoprolol 2.5 mgs daily, Vitamin C Rabeprazole 20mgs 1 cap daily, and Creon with all food does any one think there is a link here especially Rabeprazole and Vit C?

[Joolsg]

academic.oup.com/sleep/arti... Pump Inhibitors are linked to worsening or causing RLS.

Could you discuss with your doctor to see if you can take something else for your stomach issues? Or perhaps try a diet combined with Pre and pro biotics to reduce the acid?

Raising serum ferritin doesn't help everyone with RLS. I had an Iron infusion and my levels went up to 785 but I still had severe RLS.

If the PPI is causing your RLS, finding an alternative and completely changing ypur diet may really help.

Many people on here swear by diets but there are several to choose from. There's the keto, the low FODMAPS, the zero sugar,salt,carbs.

Perhaps seeing a dietician would also be very useful.

If you could resolve the RLS this way, you wouldn't need to start new RLS meds.

[CutestDevil]

Not everyone gets relief from iron therapy. It might be common cause but not the only cause for rls. Sometimes there are other factors which contribute to rls and sometimes its even without any known cause, idiopathic RLS. Well that's what doctors say. Neurologist will be best to judge what's best for you.

[Madlegs1]

With respect, neurologists are often not as knowledgeable about RLS as they should be. Sleep specialists are a better source of help.

It can take months to get over the withdrawals from Pramipexol-- look up DAWS .

Jools has given good advice.

Good luck.

[Mycatis6]

Since the Whipple, op I take Creon every time I eat and I am on a low carb/low fat so eat lots of fresh veg lots of protein and some fruit, but the RSL was very bad post immediately op while I was trying to eat but before I started Creon. However, I have since realised that while I was tube fed at home for 6 months post op with nothing orally not even water and with no oral medication I did not have RLS it was with the introduction of oral drugs and eating that the RSL started again, but I cannot work out which is the main culprit. Every blood test they do comes back with in normal parameters. I still suspect Rabeprazole which I have to take to protect my oesphagus as I have Barret's for about 20 years. I also have an underactive thyroid medication.

[Mycatis6]

As far as I remember it was elemental. You may be right as bread (flour) is the main thing that upsets me so I eat virtually none. I eat no diary except semi skimmed milk.

[Mum007]

Definitely the rabeprazole. I have taken all acid reducing medication and they all affect me. I am now trying zinc l-carnosine instead and it seems to be helping.

[Mycatis6]

thanks Mum oo7