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Restless Legs Syndrome

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neurologists

Dsw7 profile image
Dsw7
21 Replies

seen my neurologist today and he wants me to immediately stop taking pramipexole and start taking sinemet,

i did ask whether I should gradually come off prami but he assured me there was he need?

 any thoughts

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Dsw7
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21 Replies
SueJohnson profile image
SueJohnson

You don't want to take either as up to 70% of people on them will suffer from augmentation which believe me you don't want. They are no longer the first line treatment for RLS. I notice you mention pregabalin on your profile page. Were you on it?

Dsw7 profile image
Dsw7 in reply to SueJohnson

Yes my treatment started with pregablin but the side effects where really bad for me.

Joolsg profile image
Joolsg

Sinemet has the highest rate of augmentation of all dopamine agonists and has been out of favour in Europe and the USA for some time.I see pregabalin side effects put you off. Bear in mind most side effects settle within 2 or 3 months and it can be very effective for many people. The nausea, dizziness etc settle and you should take it at night only.

I personally would never consider sinemet and would advise you to get off pramipexole.

If you're in Australia, several people have been prescribed low dose opioids for their RLS.

Have you checked your bloods and is your serum ferritin above the recommended levels for RLS?

I think you need to see another neurologist because if you are suffering a worsening of your RLS on pramipexole, taking sinemet will send it through the roof.

Dsw7 profile image
Dsw7 in reply to Joolsg

Did 6 months on pregab suffered bad side effects all the way through, My neurologist doesn't seem to really understand rls, after pregab he started me on 1.05mg of pramipexole 🤪

Went through mayo clinic info with him yesterday and he thought iron was over rated.

Taking iron and vit c every night however it hasn't helped my ferritin level still 31

Not sure what to do now 🙄🙄

Joolsg profile image
Joolsg in reply to Dsw7

No wonder you have RLS. 31 is way too low serum ferritin. How arrogant of your neurologist to say iron is overrated. Clearly has ZERO knowledge.I'm compiling evidence shortly to show how poorly RLS is treated by UK doctors to force the RCGPs and GMC to teach it fully.

They refused last year and said GPs would do the necessary research. If you were in the UK, I'd ask to use your experience to prove poor knowledge and poor treatment.

Prescribing over1mg of Pramipexole is negligence as is ignoring the iron link.

The evidence from the US shows 60% of RLS patients show dramatic improvement with Injectafer infusions.

You're a prime candidate.

St George's, the Royal Cornwall and a Sheffield hospital will all do infusions for RLS if you contact haematology direct.

Are you here in the UK or in Australia?If in Australia, have a look at Shumbah's posts. She can direct you to decent doctors in Australia.

You need to keep taking iron but try every other night as that paradoxically can raise levels faster as it fools hepcedin, a chemical that blocks iron absorption.

Before you consider reducing Pramipexole you need to find a doctor who will prescribe either an iron infusion or low dose opioids or both to get you off Pramipexole and to see whether an infusion resolves your RLS. If it does, you may not need meds. If it doesn't, you'll need low dose opioids as you can't tolerate the side effects of pregabalin.

Incidentally, many people who have bad side effects on pregabalin don't have the same ones on gabapentin, and vice versa, even though they're very similar drugs. That's another possibility. I had terrible side effects on gabapentin but coped with the pregabalin side effects ( dizziness, double vision, water retention) and they did ease off.

Let us know how you get on.

Dsw7 profile image
Dsw7 in reply to Joolsg

I am uk, happy to help compile evidence

Joolsg profile image
Joolsg in reply to Dsw7

I'm even more stunned at the mistreatment! Sinemet hasn't been used for years here. I am appalled that a neurologist would suggest it!Thanks so much. I'll send you a message and will be putting up a general post shortly.

We're hoping to meet with MPs with a background in health campaigns to raise awareness of the complete lack of training and knowledge and consequent mistreatment and suffering.

Desperate100 profile image
Desperate100 in reply to Joolsg

Joolsg - things are moving so slowly with my doctor, that I'm thinking of contacting St. Georges hospital directly, as suggested above. Do you know the best person to email or write to there? As my doctor refuses toe the blood tests I've asked for, will that be a hindrance?Thanks.

Joolsg profile image
Joolsg in reply to Desperate100

The best person to write to is Dr. Elizabeth Rhodes at the Haematology Department. St. George's Hospital. You can find the email for Haematology online.Send them the latest Mayo Algorithm. If they agree and you are within the treatment area, they'll ask you to then send a GP referral letter.

If you're not in the catchment area, you can try emailing your local hospital Haematology Dept and attach the docs below as evidence.

Iron infusions dramatically improve symptoms for 60% BUT not so much if you're still on dopaminergic drugs. An infusion can help augmentation symptoms slightly but the full benefit won't be felt until you're through withdrawal.

Several of us have now managed to get iron infusions but they don't help everyone.

Good Luck!

sciencedirect.com/science/a...

mayoclinicproceedings.org/a...

ncbi.nlm.nih.gov/pmc/articl...

SueJohnson profile image
SueJohnson in reply to Dsw7

Which iron tablets are you taking? Many do not have enough elemental iron which could be why your ferritin isn't being raised. If you can tell me, I can tell you what might be better.

Dsw7 profile image
Dsw7 in reply to SueJohnson

Hi Sue,Ferrous fumarate 2 x 210gm along with 500mg vit c

SueJohnson profile image
SueJohnson in reply to Dsw7

I'm confused by the the 2 X 210 gm. Does it say how much iron? Can you give me the brand.

Dsw7 profile image
Dsw7 in reply to SueJohnson

Prescribed by GPS, didn't say how much iron

.
Dsw7 profile image
Dsw7 in reply to Dsw7

Doesn't say how much iron

Dsw7 profile image
Dsw7 in reply to Dsw7

No info on box, what iron would you suggest ?

.
SueJohnson profile image
SueJohnson in reply to Dsw7

OK the package picture you provided allowed me to find that each tablet contains 65 to 70 mg of elemental iron which is what you need. So it is strange that your ferritin isn't being raised. I agree with Joolsg that you should try to get an iron infusion.

SueJohnson profile image
SueJohnson in reply to Dsw7

Also be sure to take iron at least an hour before a meal or coffee and at least 2 hours after a meal or coffee as it is absorbed better on an empty stomach and don't take magnesium within 2 hours of taking iron and don't take tumeric.

Tobias10 profile image
Tobias10

I am currently almost done switching from Mirapex and Sinemet onto Methadone and I can only tell you that for me I wish this had happened much sooner. I have been on Mirapex for more than 20 years and what started out as a miracle drug turned into a nightmare, especially when a former doctor took me off of it cold turkey and I suffered for 17 days with no sleep and serious suicidal thoughts. I was then moved onto Sinemet and supplemented with Mirapex and never told that she knew about augmentation. My previous neurologist admitted that he knew this was a fact and then said there was nothing more he could do for me. He recommended a sleep specialist, never explaining that the sleep specialist is also the top guy for my former health plan. After two years I finally got into him after almost dying from Covid and having my lung specialist make a call for me. Five weeks ago he started me on my journel of withdrawing from Sinemet first and then Mirapex next while adding Methadone and until this past week it has been effortless and I've had more sleep than I can remember having in ages. This past week I did run into a few bumps and he had me stop the last weaning step for the Mirapex until I see him at the end of the month and we will discuss my next options. My husband is so elated that he is not finding me sobbing in the dark in the middle of the night because I can't stop the tremors and am so exhausted.

Joolsg profile image
Joolsg in reply to Tobias10

I am so sorry to hear of your suffering with RLS and Covid and am so pleased you are finally getting help. Are you in the USA? Methadone isn't available for RLS here in the UK, except for prisoners.I hope you get off the final dose of mirapex and find relief from this horrible disease.

Would you share the name of your sleep specialist? It's always useful to have names of knowledgeable doctors so we can recommend them to others.

Sleep well.

Tobias10 profile image
Tobias10 in reply to Joolsg

yes, I am in Pittsburgh, PA. We have UPMC Health System and AHN Health System with no shortage of neurologists but over the past 20+ years I have seen more than 15 UPMC neurologist (because when I worked that was who I had for my healthcare) and over the past 10 years or more I have been mis-diagnosed and mishandled multiple times. I filed a complaint with the health plan and told them that just because a doctor is a neurologist and RLS is a neurological disease does not make every one of them an expert on RLS. This is misleading and untrue and it is not fair or good medical practice for them to be treating people hit or miss for something this serious. They same doctors who continually increased my Mirapex until I was taking well above the recommended amount were the same doctors who then said I was taking too much and I was no doubt experiencing augmentation and then took me off of Mirapex with no tapering and then went on vacation and left me with no support system. Looking back I am totally comfortable with the documentation I sent to their corporate office explaining the need for better monitoring of specialists and their level of training for specific diseases such as RLS. They, of course, responded that they were not wrong. I am just happy every time I get 2, 3 or 4 hours of uninterrupted sleep now and a full night sleep is cause for celebration. I just pray that others find their own source of relief and that my children and my niece's children do not display symptoms nf RLS. Thanks for always offering your insight here - you, like I, have done your homework!

Lolly53 profile image
Lolly53 in reply to Tobias10

I am thankful you found a specialist who actually knew about the efficacy of Methadone for RLS. Even here in the USA there is a woeful lack of knowledge among medical doctors about how to treat RLS. I have been on a low dose of Methadone for 5 years now and it has transformed my quality of life unbelievably. I was so very fortunate to find Dr. Ondo in Houston. But my primary care doctors have been so wary of prescribing Methadone and won’t read up on the latest RLS research either. So frustrating. Anyway, I wish the best for you!

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