New meds

[loops1207]

I have just finished coming off Pramipexole after augmenting. My doc has now prescribed Carbamazepine. Has anyone had any experience of this? Thanks 🙏🏻

[Joolsg]

bandolier.org.uk/booth/RLS/...

It's not one of the usual meds prescribed for RLS after augmentation, but there are studies showing it is effective.

As you're only just through withdrawal from Pramipexole, it may take a few weeks to be effective. I hope it helps.

[SueJohnson]

It may help RLS but why not go why gabapentin and pregabalin which may completely control your RLS. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it atHttps://mayoclinicproceedings.org/a...

Also, have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[loops1207 in reply to SueJohnson]

Hi Sue,

Thank you so much for your reply and info. I was on Gabapentin for years for nerve pain and it did nothing for my RLS. I have just had my iron checked. Transferrin saturation was 17% and Ferritin was 27. My doc has put me on Ferrous Fumerate 210mg to bring levels back up. I was hoping for iron transfusions as I hoped this would work quicker. I have also just stopped taking esomeprazole as I found out this can be a trigger.

[SueJohnson in reply to loops1207]

I realize this is late but since I advised you on taking iron every day I did more research and discovered I was wrong. One absorbs more iron in alternate day iron than taking it every day. Https://thelancet.com/journals/lanh... Thought I should tell you in case you are still taking it.

[SueJohnson]

Take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day, 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, 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. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

How much gabapentin did you take and how much of that was at night which is when you need it for RLS? Since you took it for pain I suspect you didn't take enough at night. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin and that would ne at night.

[loops1207]

I was taking 1400mg of Gabapentin daily, 600 morning and 800 at night. I hated the way it made me feel mentally so eventually asked my doc to take me off it. I really wouldn’t like to go back on it and I definitely felt no relief while on it. I was taking Pramipexole at the same time, that was the first time I augmented. Thank you so much for the info regarding iron absorption, my doc never told me any of this. I’m having major issues with reflux since stopping esomeprazole and have been popping antacids all day so I’ll need to fix that.

[Joolsg in reply to loops1207]

Try Symprove. It's a pro biotic drink and really helps reflux.And gaviscon is safe for the reflux and RLS.

But raising your serum ferritin is the most important step. Ask your doctor again to refer you to haematology for an infusion. St George's in Tooting and the Royal Cornwall in Truro and Cardiff hospitals are aware of the benefits of Iron infusions for RLS.

sciencedirect.com/science/a...

[loops1207 in reply to Joolsg]

Thanks Jools. 🙏🏻

[SueJohnson in reply to loops1207]

As Joolsg said you really need an iron infusion since your transferrin saturation was below 20%. If you have one, get a new test after 8 weeks. If you can't get it, take two of your iron tablets every day at the same time so it is at least 24 hours apart, preferably at night to raise your ferritin faster.

It is not surprising that the 800 mg of gabapentin did nothing for your RLS since that is a low amount and you were still on pramipexole. Wait until your symptoms have settled from coming off pramipexole. Then you might want to try pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The starting dose is 75 mg and it takes 3 weeks before it is fully effective. If you are having the same side effect you can come off it. Nothing ventured nothing gained! If not after 3 weeks increase it by 25 mg until you find the dose that works for you.

If that doesn't work then your next choice is a low dose opioid. I recommend buprenorphine which has helped many on this forum.

[loops1207 in reply to SueJohnson]

Thank you. I’ll have a chat to my doc.