Advice please

[milly-22]

Following previous posts on this forum I have now, over a few months, decreased my Ropinirole from 8 tablets per day to 1 1/2 and will be decreasing to 1 per day on the 19th August when I will begin my Pregabalin treatment as suggested by Sue. Can you give me any indication how long it will take for the Pregabalin to take effect. I know that I can increase the dose every few days.

I am still in agony afternoon and evening [arms and legs] and get little rest although most nights I do get 4-5 hours interrupted sleep. My Doctor has prescribed me Co-codamol [15/500 mg. codeine and paracetamol] where I am taking the full amount of 8 tablets per day. Should I be on or will I need a stronger prescription.

I have CKD stage 3 so will the pregabalin work or will I be stuck with this level of RLS for the rest of my life [I'm 76].

I have ditched the statins that I was on although I haven't yet told the Doctor. I am still taking Bisoprolol 1.25 mg. and Edoxaban 30 mg. per day as several years ago I had a TIA and I also have had atrial fibrillation.

I still lead a very active life and am on my feet most of the day so the RLS doesn't affect me then but if I want a lie down in the afternoon and to sit and read or watch TV in the evening I have to get up and keep moving. I've put up with this for the sake of coming off the Ropinirole but I do hope that once I am established on the Pregabalin I can relax when I wish. I am concerned that as age makes me less active I will not be able to lead a quite life.

Thanks again to everyone for all your help. This forum has been hugely helpful to me as my Doctor along with most British G.P.'s is very ignorant about RLS.

[SueJohnson]

These are my notes on those with kidney problems: Pregabalin doses should be kept low and patients carefully monitored for adverse effects, such as mental confusion and falls Doses should be adjusted for renal dysfunction. In patients older than 65 years, initial daily dose should be reduced ( pregabalin, 50 mg) since they are eliminated primarily by renal excretion, adjust the dose in adult patients with reduced renal function

Patients with kidney problems should take care with magnesium supplements. Magnesium supplements can cause excessive accumulation of magnesium in the blood, especially with patients who have chronic kidney disease.

From ncbi.nlm.nih.gov/pmc/articl.... "Morphine and codeine are not recommended, because the accumulation of their metabolites may cause neurotoxic symptoms. Oxycodone and hydromorphone can be safely used, but adequate dosage adjustments are required in CKD. "

As far as when the pregabalin will be fully effective, it usually takes 3 weeks.

[milly-22 in reply to SueJohnson]

Hi Sue

Apologies for not replying and thanking you sooner for, as always, your valuable information. May I ask one more thing? With my iron tablets - Ferrous sulphate - I have been prescribed one 200 mg. tablet to be taken 3 times per day but I seem to remember you suggested 350 mg. once per day so I have been taking just 2 together rather than the three spaced out as prescribed. Am I correct in doing this?

Many thanks once again.

[SueJohnson in reply to milly-22]

Yes you are correct. Just be sure to take them at the same time each day so they are spaced 24 hours apart.

I may have already told you this but take them with 100 mg of vitamin C or some orange juice since that helps its absorption. Take them at night 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, calcium or zinc, even in a multivitamin, take them at least 2 hours apart since they 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. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night.. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets

[Firenze1]

Hi, you are roughly on the same path as me so I share your pain - literally!! I reduced the Ropinirole on 28th June and started Pregabalin so it's a constant daily battle however I am trying to remain positive. At present things are only mildly better and I feel I am educating the GP, who I have yet to meet, that's been 'helping' me but at least I'm getting what I wanted. Kind of. Just wanted to say you're not in this alone