Pramipexole to Sinemet to ?

[robertff3401]

I've previously posted that I had been using pramipexole (P) for over 30 years, had only learned about augmentation recently and was in the process of transitioning off P to Sinemet (S)(recommended by my PCP). The transition went very well, however, an allergic reaction to S (a rash developed) made it necessary to get off S. I talked to my PCP this morning (2/27/23) and proposed that I reverse the transition process back to P and then transition to something else (not another dopamine agonist). He agreed.

Now I would like to hear from some of you who are much more familiar with the various ways of transitioning and with the medications available to transition to. I would appreciate your comments about the following.

1. Should I transition from S back to P or would you recommend that I transition from S to something else and not go back to P first? 2. Regardless of which of 1 or 2 that I do, what is the best drug to end up with. I would classify my RLS as moderate to severe.

The other piece of information relative to my RLS treatment is that I had my ferritin level tested and it was 66, and I began taking iron (65 mg iron and 250 mg vitamin C) about a week and a half ago.

I look forward to your comments.

[SueJohnson]

You can directly wean off sinemet if your allergic reaction does not bother you too much at the rate I mentioned before or if you transition to pramipexole reduce by .125 mg. Gabapentin or pregabalin is the first line treatment for RLS. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off sinemet 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. If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. 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." . 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...

[robertff3401 in reply to SueJohnson]

Again, thank you so much Sue. May I be so bold as to ask how you know so much about the ins and outs of using the proper medications for RLS? Obviously you know much, much more than my PCP does. I am so grateful for your valuable input. Bob Francis (robertff3401)

[SueJohnson in reply to robertff3401]

I went through what many others did. 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. Also, any time anyone mentions a medicine or supplement I research it and add it to my list which is now also 40 pages long.

[Qalba in reply to SueJohnson]

Sue I did not know this about you. I read your advice to others and you are knowledgeable and so kind. Thank you!

[robertff3401 in reply to Qalba]

You are right about Sue. I trust her advice more than I do for my own doctor. Even more I appreciate her willingness to help others.

[TurcoGabriel in reply to SueJohnson]

Sue, did you try Restlokor? I took it for 4+ months now but it does not seem to help much in my case.

[SueJohnson in reply to TurcoGabriel]

No I didn't

[SueJohnson in reply to TurcoGabriel]

Most of the ingredients mildly help one sleep. The magnesium helps many people but could be bought more cheaply separately.

[robertff3401 in reply to SueJohnson]

Sue, I'll direct this question directly to you. Others are welcome to also comment. I recently posted that I have now transitioned from pramipexole to Sinemet (as suggested by my doctor). I had an allergic reaction to Sinemet (rash) and now want to change to gabapentin or gabapentin enacarbil (Horizant). My question: Is one of these preferred over the other for treatment of RLS? I also conisdered pregablin, but my doctor said he would NOT prescribe it for me because of the side effect in some which decreases stability in walking. He is afraid it might lead to a fall.

[SueJohnson in reply to robertff3401]

Horizant is a 24 hour formulation for those that have RLS during the day. The gabapentin is better if you only have symptoms in the evening or at night. Horizant is much more expensive although they have a prescription savings card which reduces the cost. Medicare drug programs do not cover it. There is a question whether the prescription card works if you are over 65.

[TurcoGabriel in reply to SueJohnson]

In my case, Pregabalin adverse side effects lasted for a month or so. As I take it in the evening I don't notice significant adverse side effects during sleep hours

[TurcoGabriel]

Based on what it costed me to get off dopamine agonists, I would not recommend going back to Pramipexole. I am taking 225mg pregabalin and it allows me to have full nights of sleep.

[robertff3401 in reply to TurcoGabriel]

Did you go directly from pramipexole to pregabalin or did you do a transition by adding a small amount pregablin at the same time you subtracted an similar amount of pramipexole over time until you were on 100% pregablin? I haven't started going back to pramipexole yet, so I can (with my doctor's approval) still go from Sinemet to something like pregablin or gabapentin.

[TurcoGabriel in reply to robertff3401]

Based on the Mayo clinic updated algorithm I spoke with my neurologyst and I slowly subtracted Pramipexole and at the same time I added Pregabalin.

After a while I decided to slowly reduce Pregabalin until I was free of drug for 3 to 4 months (my doctor didn't approve it but she let me proceed with the experiment). My sleep was seriously affected at that time, I had to wake up up to 6 times a night for a 15 min. walk each.

I called the neurologyst and asked to start with Pregabalin again, and I started with 75mg adding 50mg per week until I reached 225mg that was my last known effective dose. Now I am sleeping very well. I take the medication 2 or 3 hours before bed time.

On the iron subject, it takes several months until iron reaches the brain, I am also taking iron with Vitamin C. I took iron several times but it seems it is not effective for me.