Update for carpetbagger

[Carpetbagger]

Still on pramipexole but hopefully now not for much longer. My doctor at last agreed to send a referral to the hospital for me to see a consultant. Today I had a telephone call from the hospital to say that the consultant had spoken to my doctor (locum) and advised that I should be put back on clonazepam. Although I feel very pleased, all these months of side effects have been for nothing. Although saying that, I have learned so much about dopamine agonists and relevant drugs from Sue and Jools (thank you) which I think has helped me fight my corner. I am going to closely follow Sue's advice on reducing the Pramipexole slowly. Do you think there is any chance of withdrawal being less severe since I'm on the low dose and only been on it for six months. Do you think I will have to have a clean slate before starting clonazepam or will I be able to use the clonazepam to help me come off Pramipexole. I will continue with the Ferrous Fumarate 325mg as I have learned from the Forum this is so important. If any of the dopamine receptors have been damaged in this time does it mean the iron receptors are OK. Sorry for the long post but there is so much expertise on the Forum and the doctors are seldom able to answer questions.

[SueJohnson]

Actually I am surprised the clonazepam controlled your symptoms before as it is no longer recommended for that purpose as its efficiency has not been established. However we are are all different and can respond differently so I am glad you were finally able to get it. So it is hard to say whether it will help you come off pramipexole.

It's also hard to say whether your withdrawal will be less severe since you have only been on it for 6 months.

You mention you are taking ferrous fumarate. Have you had your ferritin tested? If so what is it?

[Carpetbagger in reply to SueJohnson]

Thank you for your quick reply. On looking at my test results I'm not too good at reading them but it says T'ferrin saturation 14%, Iron 10 umol/L, Transferrin 2.90 g/L. The doctor wasn't too keen to explain.

[SueJohnson in reply to Carpetbagger]

Your transferrin saturation is very low. It should be above 20% even for someone without RLS. So I guess your ferritin wasn't tested since you didn't mention it but it is bound to be low too with your transferrin saturation low. With that low a transferrin saturation you really need an iron transfusion to bring it up. Ask your doctor for it. Point out that it is below 20%. In the rest of the UK I could tell you where you could get it privately but I don't know anywhere in Scotland although I am sure there are places and it would cost around £800 so it is not cheap. Bringing it up would help your withdrawal.

In the meanwhile if you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take your ferrous fumarate with 100 mg of vitamin C or some orange juice since that helps its absorption.. Also take Lactobacillus plantarum 299v as it also helps its absorption.

Take it every other day as more is absorbed that way preferably 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 (or magnesium rich foods), calcium (or calcium rich foods) 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 turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours.

It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Ask for a full iron panel so it will include ferritin. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.

[Carpetbagger in reply to SueJohnson]

Thank you so much Sue. That was so helpful. I think the private route for the infusion is the only way but very expensive. I can’t see my surgery agreeing to it.

[SueJohnson in reply to Carpetbagger]

taysidecompletehealth.com/i... in Dundee does private infusions

Also check this one to see if does private infusions glasgowprivateclinic.co.uk/...

[Dotmowatee in reply to Carpetbagger]

My surgery did, the haematologist in my local hospital agreed right away. He knew about rls. Ask to be referred.

[Carpetbagger]

thank you.