Augmentation - please help: Hi all, I... - Restless Legs Syn...

Restless Legs Syndrome
12,767 members8,161 posts

Augmentation - please help

RoMB
RoMB
18 Replies

Hi all, I am just new in this forum. I am basically desperate, my neurologist does not believe in augmentation and all he says is to increase the dose of Mirapexin I am taking. This is not working and I am suffering every day more and more, affecting me in every level of my life as I don’t get to rest. I suffer now from IBS and I am suspecting fibromyalgia as well.

I need to find a good healthcare professional who can help me. Does any one knows a good neurologist or other professional that would be able to help me, please?

I live in Dublin but I don’t mind travelling to find the proper help!

Thank you in advance!

18 Replies
oldestnewest
Madlegs1

I've replied to your PM.

I addition, I've looked up the internet for "augmentation and Mark Buchfuhrer" which throws up a few papers thay may help your medical team to understand that therevis a problem and a way to deal with it.

Some of the titles throw up an error 404 code- but others will come up trumps. Just go through and download what you need. Mark Buchfuhrer is one of the world experts on rls. He may be contacted on

rlshelp.org

email on a tiny yellow icon on left of opening page. There are also pages of QnA on the site. Very useful.

In terms of augmentation, you need to taper off Mirapex and start on Gabapentin or Lyrica, but also het painkillers for the withdrawals. Tramadol is usually recommended, but Oxycontin is also good.

I'm linking a guide to withdrawal help Matt Finch (mainly for opiate withdrawal- but it is a similar experience.) He has a hard sell which you can ignore, but a useful list of helpful medications which may be of help.

opiateaddictionsupport.com/...

6 likes
Reply
RoMB
RoMB
in reply to Madlegs1

Amazing help! Thanks a million!

1 like
Reply
Franklin123

Hi - as you seem to be very well informed - can I ask you what you know with regard to Targinact - I believe is a codeine relative.

Reply
Madlegs1

I'm sorry, Franklin, but Targinact is a drug I have no experience of.

Try Googling "Targinact and rls" and you'll get a lot of information there.

Good luck.

Reply
Franklin123

Hi - I have done that and it seems it is used - further to my blood test this morning to test for ferritin levels: I have had no blood taken because the nurse said I am very dehydrated??? I have never had this said before, and nothing has changed as regard drinking, I possibly drink more. I may be suspicious, but I believe the nurse did not believe that the ferritin should be at least 100 for rls. What to do. I am returning on Friday p.m. to hopefully have this done. Should I have elected to go to hospital blood clinic - someone independent?

Reply
Madlegs1

It is possible to be dehydrated enough to be not able to hit a vein.

But a good phlebotomist wouldn't have a real problem.

Drink two litres of water in the 12 hrs before getting blood taken. Maybe avoid coffee and tea also.

Good luck.

1 like
Reply
Franklin123

When I mentioned the `serum ferritin` levels - the nurse seemed to take a back step. Should I have just taken the normal test they would have implemented?Doctor Mark B. says that taking Heamoglobin and iron levels is not what shows the ferritin level. Should I mention it when I attend again (having made sure of hydration). ?

Frustrated.

Reply
Madlegs1

Serum ferritin is serum ferritin.

That nurse seems not to be listening to her doctors prescription.

Do you have a better choice of blood testing? Or maybe talk to your doctor.

But ,then, is the nurse actually refusing to do the test??

I'm not really sure exactly what is going on here!😎

Reply
LotteM

Involuntarydancer lives in Dublin and has a helpful gp. Maybe she can advise you?! A gp willing to listen and read evidence (papers etc) you bring is far more helpful than an ignorant neurologist. Fortunately my neurologist is knowledgeable in RLS, but she lives and works in The Netherlands, too far off.

4 likes
Reply
LotteM
LotteM
in reply to LotteM

Also Raffs, but he is not online very often any more.

But you may try sending both him and ID a PM.

5 likes
Reply
RoMB
RoMB
in reply to LotteM

Hi LotteM, thank you for your reply! My sister lives in the Netherlands and I visit her sometimes. If you wouldn’t mind, could you pass me the details of your doctor, please? Best Regards

Reply
Henshaw241241

Hi I have had RLS for years feed up going to doctors all different tablets works for a while I walk outside at night climbing the walls till I saw a woman doctor and she sent me to a neurologist she checked me all over very I was on pramipexole very small dose I took at night time when I go to bed she told me to stop them was to small dose so she put me on pramipexole 0.18 mg 1 tablet at 1500 hrs and 1 tablet at 2100hrs plus 2 codene 30 mg with the 2100hrs made a lot of different hope this helps 241241 Tony

1 like
Reply
Brica

RoMB. You need to find another Dr. who knows how to treat RLS. The RLS Foundation can be helpful in this regard. Brica

1 like
Reply
ironbrain

"The daily dose should not exceed 6 tablets MIRAPEXIN 0.088 mg or a dose of 0.54 mg (0.75 mg pramipexole salt)."

admin.medicines.ie/uploads/...

You don't say how much you are taking, but if you are taking more than that, I guess you would probably be taking more than the maximum the licence states for RLS.

As I understand it in the UK, a doctor can prescribe nearly anything they think would be beneficial for their patient. When they do prescribe off-licence, I think it's a requirement, or at least a fully established procedure, to make sure the patient understands that.

Are you taking over the licence limit? To what extent have you discussed it with your neurologist?

"Targin is indicated for patients suffering from RLS for at least 6 months. RLS symptoms should be present daily and during daytime (4 days/week). Targin should be used after failure of previous dopaminergic treatment. Dopaminergic treatment failure is defined as inadequate initial response, a response that has become inadequate with time, occurrence of augmentation or unacceptable tolerability despite adequate doses. Previous treatment with at least one dopaminergic medicinal product should have lasted in general 4 weeks. A shorter period might be acceptable in case of unacceptable tolerability with dopaminergic therapy."

hpra.ie/img/uploaded/swedoc...

I don't know how the health authorities work in Ireland, but it may be the case that, even given the above, they are advising (telling?) doctors not to prescribe opioids/opiates.

The most worrying case to me is that doctors decide not to prescribe off-licence and not to prescribe licensed opioids/opiates. Does one then have recourse to claim one is not being treated in such circumstances (as almost an emergency, one might say)?

1 like
Reply
RoMB
RoMB
in reply to ironbrain

Hi Ironbrain, thanks for your help! Yes, I am taking the maximum dose and in some occasions I take some extra. I explained to my neurologist (in Spain)that increasing my dose was not helping me but he only switched me to the same in slow release which is working even worse. That’s why I am desperate, not knowing where to go. My original Gp in Ireland was only prescribing quinine! I live in Dublin but travel to Seville often.

Reply
Merrilymerrily

There are so many helpful people on here with a lot of personal knowledge and experience. I found good information on here when my husband was augmenting on ropinerole. Read everything u can on here. He is so much better...amazingly so...WITHOUT ropinerole. It was tough. But getting to the other side was worth it. He also had iron infusions, which we feel helped immensely but we didnt know it until he came off ropinerole. He just quit it one day, all at once. I'm not sure that was the best way, but glad it's over. Good luck to you!!!!

Reply
Wonko_TheSane

If you're in the Netherlands you could try and get some kratom. Head shops sell it there. It got me out of the exact situation you are in. Try a teaspoon dissolved in grapefruit juice and see how much you can reduce the Pramipexole.

1 like
Reply
railr

I would call Stanford Sleep Center in Redwood City, California at 650-723-6601 and get on the waiting list to see Mark Buchfuhrer, MD.

Reply

You may also like...