Transition from Pramipexole to Horizant

[darcy6577]

Due to back spasms and some augmentation my doctor recommended transitioning from pramipexole to Horizant - any suggestions or helpful hints?

Would prefer to get off medication all together but don't think that is possible. Has anyone had success with supplements?

[SueJohnson]

Horizant works 24 hours a day. If you didn't have RLS during the day before you augmented, you are better off switching to gabapentin or pregabalin since Horizant is very very expensive (around $5,000/year) and almost all insurances do not cover it whereas gabapentin and pregabalin are very inexpensive. I pay $48/year for gabapentin. So I will give you advise on those. To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Dopamine agonists like pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is or Horizant which is basically the same thing. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. 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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[darcy6577 in reply to SueJohnson]

Hi Sue -

Thank you so much for your reply - you have an amazing amount of knowledge about RLS and the medications. I so appreciate your response. I am still processing the information and may have some additional questions - may I ask are you a medical professional? If not how have you obtained such a great amount of knowledge regarding this subject?

I just received my blood test results and my ferritin is terribly high - 355.16 ng/ml so will need to explore this further. My iron is 102 / transferrin 309 / iron saturation 26% / iron binding capacity 386 which are all within the normal range.

Thanks again for your reply - you are a great advocate!

Darlene Clark

[SueJohnson in reply to darcy6577]

No, I am not a doctor. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others.Most of my advice comes from the Mayo Clinic Updated Algorithm on RLS and the rest from my research and my own experience.

[SueJohnson in reply to darcy6577]

Don't worry about your ferritin being 355. Mine was over 500 and my doctor just said to stop taking iron tablets.

[darcy6577 in reply to SueJohnson]

The thing is I am not taking iron supplements.

[Beckonwood]

I tried Horizant and found it didn't do a thing for me. I have been taking oxycodone 5 mg three to four times in the evening and found it works the best for me. I have been through several of the meds for RLS and so far haven't found one that really works. I was on Mirapex for a number of years and besides putting on a great deal of weight kept taking more to stop the RLS until I couldn't take any more.

[darcy6577 in reply to Beckonwood]

Thank you for your feedback. After getting the reply from Sue, I do not think Horizant is a good fit for me anyway!

[TeddiJ in reply to darcy6577]

Hi. Depending on how long you were on the PRAM, neither HOR or GABAP may work for you. I hope I am wrong, but that is what happened to me and others who were on the DA's for years. Of course, it is important to try both of them, as this forum has shown that they both work differently for each person. Horizant was specifically made for RLS, which is why some doctors prefer it. I tried both and they gave me different side effects. I am now using kratom and hirsuta and trying to avoid going back to a full-blown opioid. I am also trying lots of supplements but I don't think you will know which work for you until you get off the PRAM altogether. For now, you should definitely add iron and magnesium and avoid all the usual RLS triggers.

[darcy6577 in reply to TeddiJ]

Thanks Teddi - appreciate the information provided