Interacting with Dr. Buchfuhrer

[Billdel]

I have suffered RLS for many years and am withdrawing from high doses of Pramipexole. Looking for relief during withdrawal and what to use for control of RLS after withdrawal. I see posts referring to corresponding or recommendations from Dr. Buchfuhrer. How do you communicate with him? I would like to do so.

[LotteM]

Dr Buchfuhrer’s site is rlshelp.org. On the home page you’ll fond the email option. Lots of good info on the treatment page and in the patients letters and his replies to them. But you have to take the effort to dig through the information and it helps to have some basic knowledge as some info is old/outdated.

You must have been off pramipexole some 6 days now. Are you still taking gabapentin? You won’t be able to assess its effectiveness until the withdrawal has eased off. And that may take several weeks. So don’t increase it too much. Or better, not at all.

The common idea here is that only a fairly strong painkiller, like tramadol, will help to reduced the increased rls-symptoms during withdrawal from a dopamine agonist (DA) like pramipexole. Once through, you may be able to reduce it again and stop taking it. Or remain on a combination of low doses of both an opioid, like tramadol and an alfa-2-delta ligand, like gabapentin.

Good luck and keep us posted

[Madlegs1 in reply to LotteM]

The email option is a tiny yellow icon on the page. Just go straight in- it goes direct to the good Dr.

It would be advisable to read a few of the last pages before you write , as your topic will almost certainly have come up recently. ( Not to be wasting his time! )

Good luck.

[Billdel in reply to Madlegs1]

Thanks. Good idea. I will do that.

[Hidden in reply to Madlegs1]

Thank you to all of you for this info.

I have now emailed Dr Buchfuhrer having read quite a lot on his site so will see in due course if he has any time to reply. As I also have a peripheral neuropathy maybe there will be other options. If I hear back anything interesting I'll let you all know ( especially if it works )

[Hidden in reply to Hidden]

Dr B. always replies back in 24/48 hs.

[Hidden in reply to Hidden]

Hi again Elisse and all of you, so yes, true to what you suggest Dr B replied to me 1st thing this am with a very full and helpful reply. What a wonderful, selfless and understanding service!

Not sure what he says will make any difference to me but he did also attach a paper about the use of Opiates and the science behind their use. Some of you may have already read this but I hadn't. The science was a bit complicated but I got the general idea and also specific recommendations which hopefully folk could take to their GP's both in the UK as well as the US.

So, I'm happy to send this to you all - if only I knew how! Trying to summarise his email and the attached paper will be hard and I think folk being able to read them in their entirety would be best and the most useful.

Also to say I've just received my latest Ferritin result having taken the Ferrous Bisglycinate which was recommended to me on this site, rather intermittently I have to admit. Dr B said oral iron wasn't effective but my Ferritin has risen from 60 to 88 so I am going to keep going and hope.

So if any of you could guide me through how to pass on my email and the attachment on this site I will try to do it.

[Hidden in reply to Hidden]

Just to say I've also had a look at the rlshelp.org site to see if Dr B's reply to me has appeared on it but it hasn't when I look on the last page 117, so I will need to send it another way for those who'd like to see it and the attachment

[Hidden in reply to Hidden]

Alison your email to Dr. B and his reply will appear for everyone to read eventually. I think he waits til he has a few to add.

[jan_ET in reply to Hidden]

yes pleease i would love it thanks Alison

[Hidden in reply to jan_ET]

Only thing is I don't know how to pass on the email and the attachment on this site! Elisse has said that Dr B's reply will appear for everyone to read eventually on his rlshlep.org site, whether that will include his attachment I don't know.

I'm not good at finding a way to send links, but what I'll do is I'll supply the title and source of the attachment and see if that can then be googled by others to find - or if someone can tell me how to send on the link I'll do that

[Hidden in reply to Hidden]

OK everyone, the attachment is called 'The appropriate use of Opiods in the treatment of refractory restless leg syndrome.' It is from the Mayo Clinic, several authors including Dr Buchfuhrer, with web site mayoclinicproceedings.org , in the issue dated January 2018 and if you search down you find a section called Consensus Recommendations which is where it appears.

It seems to have open access as when clicked on the entire article I was supplied appears

[LotteM in reply to Hidden]

Hi Alison, this is the same paper that others posted about before. Joolsg through a post about it on the rls.org website. rls.org/file/Guidelines-for... . I hope it clarifies and helps you understand things.

And someone else (don’t remember who)posted a direct link to the original paper already. If you want to understand it better, let me know and I’ll try to translate the main messages in ‘ordinary English’.

[Hidden in reply to LotteM]

Thanks LotteM,

I think I understand the main messages but thanks. It's good to see it all in black and white. Sorry I got excited about the attachment when it was already known about but maybe some more folk will find it by this different means.

It's good that some Drs are interested enough to try to solve this problem for us and also hopefully the consensus statement will avoid some folk not getting what will help them and others having to deal with coming off other meds.

Dr M did say in his email that he shared my concerns about DA's. He didn't say as per the guidelines that I should try DA's before opiates. I have a feeling that eventually DA's will no longer be recommended given all the problems that are emerging.

I noted in the article that it was stated that Tramadol might cause augmentation and he mentioned this as a possibility in his email.

He said Pregabalin doesn't but I still suspect it did in me though will never know. By that I mean my RLS became worse and has never reverted to its pre Pregabalin level so maybe that's not the same as augmentation or maybe it was going to happen anyway. I've been off Pregabalin for ages now

[Billdel in reply to Hidden]

Allison, I also have peripheral neuropathy amd will be very interested in what Dr. B has to say about the combination with RLS.

[nightdancer in reply to Billdel]

He will say most likely no connection, but there have been no studies. I can say that with great surety.

[jan_ET in reply to Hidden]

do you know anything that helps peripheral neuropathy my friend has it and is having B12 injections and acupuncture - thanks if you can help - Jan

[Hidden in reply to jan_ET]

peripheral neuropathy has lots of different causes so it depends if it is eg a deficiency eg of B12 or being Diabetic or one of the myriad other causes as mine is. If there's not a remediable cause then it's just a case of waiting to see what nature does. If it's painful then there are things like Gabapentin which can help but this would all have to be treated by your friend's dr. It is a wide and specialist field.

[Billdel in reply to LotteM]

Thank you for the good information. I look forward to visiting Dr. Buchfuhrer's website. I tjhink all the pramipexole is out of my system, but the residual affects certainly are lingering. I am trying 600 mg gabapentin 2 times a day. May double that as it isn't helping much. Do you know if you can just stop it without a gradual reduction in dose, without a problem?

[Joolsg in reply to Billdel]

It takes about a month for your body to adjust after withdrawal from pramipexole so don’t increase the Gabapentin yet. Take a strong painkiller just for this residual time of withdrawal, perhaps tramadol. You can then stop the tramadol after a few weeks.

[Billdel in reply to Joolsg]

Do you know if there is a withdrawal from tramadol, and what strength is reasonable during withdrawal?

Thanks

[Joolsg in reply to Billdel]

I took 50mg twice a day during withdrawal from Ropinirole and increased this to 50mg every 4 hours for about 10 days during the worst part - the days after the last dose.

I stayed on 50mg twice a day with 900mg of Gabapentin for around 4-5 months and then switched to OxyContin and pregabalin. I stopped the Gabapentin and Tramadol cold turkey and went straight onto Oxy and pregabalin. I’m not sure that is sensible but I was fortunate that I didn’t get any withdrawal effects.

[Billdel in reply to Joolsg]

Thanks joolsg. That gives me an idea of what to talk to my Dr. about.

[Shaft1952 in reply to Billdel]

withdrawing from tramadol.was hell for me my DR tried the combined tramadol & paracetamol, the option given to me was methadone& there was no way I could take, as a registered nurse in UK, I would loose my registration, the only other option was cold turkey, 6 days of hell, but worth it. hope this helps shaft1952

[Billdel in reply to Shaft1952]

Thanks Shaft, I am into 10 days and am having 24/7 RLS to varying degrees. Earlier I had a couple days with NO symptoms and thought I was headed for clear sailing. Not so far!

[Hidden in reply to Shaft1952]

Shaft, you are the first person who has RLS that was offered methadone that i know of. I didnt think it would be used for RLS in the UK.

[Shaft1952 in reply to Hidden]

At the time my RLS hadn't been fully diagnosed, I was on tramadol post knee replacement, it was given as pain releif, & I would never touch it again.

[Bganim1947 in reply to Shaft1952]

I’m curios to know why you say you’d never touch Tramadol again. What dosage were you on and for how long. I’ve been on it for a number of years with no bad side effects. But I know others like yourself have not had good luck with it.

[Shaft1952 in reply to Bganim1947]

I was on 50mgs 3 times a day for 6 weeks, but weened it down as it was only being used as a pain killer, following a knee replacement, so not for RLS, it was comming of it as no longer required for pain that caused the problems. My RLS only got worse after that operation. cherrs shaft1952

[Bganim1947 in reply to Billdel]

I had to gradually withdraw from Gabapentin after getting off Ropinerole—a similar Dopamine Agonist to pramipexole —since the Gabapentin wasn’t doing much. I was in what Dr. Brufuher called DAW syndrome.

My doc put me on Lyrica or as it’s better known pregablin. (Not sure of spelling). She had me start by replacing one dose of Gabapentin with one dose of Lyrica—100 mgs for me. I stayed on that plus my other two doses of Gabapentin for a few weeks. You can’t take Gabapentin at exactly the same time as Lyrica since the are both alpha 2 ligand, but Lyrica is stronger. Then I did the same with my second dose of the day, and finally the third dose until I was on 300 mgs total of Lyrica. Plus I was supplementing that the whole time with 100 mgs of Tramadol 3x a day.

It took me a while to get off the Gabapentin because I was on 1800 mgs a day, and had been on it for several years.

Now that my body has acclimated 4 months later, I get almost no RLS, and if I get anything from being over tired or on my feet too much, it is very mild.

You can read my post from last night about the amazing cream I put on my legs if I do happen to get a little twinging as I call it now. BTW I’m still on the Tramadol too.

This may not work for everyone, but it’s been a godsend to me I feel normal again.

I found the real key to almost no RLS is taking my three doses of Lyrica and Tramadol precisely at the same time for each dose—7 hours apart, based on the half life of Lyrica.

Lyrica is expensive in the US, but one can apply to the Pfizer Co. for assistance. I pay nothing for my meds. See their website Pfizer.com/Lyrica.

[Billdel in reply to Bganim1947]

Thanks Bganim, This gives me some more options and guidelines. Glad you have found the right balance and are symptom free. Keep it up.

[nightdancer in reply to Bganim1947]

DAWS syndrome is dopamine withdrawal syndrome, from meds like pramipexole and ropinerole.

[nightdancer in reply to Billdel]

reduce slooooooowly. Takes a while to build up, so you have to wean down off of it

[Billdel in reply to LotteM]

Hi LotteM, I am 21 days into withdrawal now and doing much better than the initial 10 + days. Symptoms to varying degrees occur from about 7 PM to about 5 AM. I didn't take gabapentin because it did not help my situation. Now I will take a 10 mg pain pill late at night and that usually enables me to get to, or back to sleep. I have occasional days/nights with no symptoms. I can not figure out why, so I just enjoy them as they come?

Billdel

[Herve]

Hello Billdel

I am also being weaned off Pramipexol for two connected reasons. First as a dopamine agonist it was no longer effective having been on dopamine agonists for several years. Two, the drug was causing severe augmentation affecting my upper limbs as well as my legs. The severity of symptoms was worse during the evening but would have been severe at night also if I had not been taking additional drugs.

I am currently down to approximately 88mcg x twice daily and augmentation is much improved. At night time I take clonazepam 500mcg x 2 and tramadol 50mg x 2. This helps me to sleep and is effective in controlling RLS symptoms. Both drugs need to be taken at least 2 hours prior to bedtime. Tramadol is now a controlled drug and therefore requires additional precautions as a prescription drug.

If your daytime symptoms remain a problem whilst off pramipexole there are alternative drugs that can be tired but you really need to have a consultation with either and experienced GP who has a specialist interest in neurological conditions or a neurologist.

Best Wishes

Pierre Herve

[Billdel in reply to Herve]

Unfortunately Herve, I am waiting till March to see a RLS Dr. at a local RLS Clinic. I am hoping they get a cancellation so I can get in sooner. In the mean time I am trying to get my Primary Care Dr. and a Neurologist who is a tennis friend but not into RLS to talk to each other and come up with something to get the symptoms calmed down. I'm running out of sleepless energy. I didn't think there was any connection between RLS and peripheral neuropathy, but am anxious to see what Dr.B replys to Allisons inquiry on the 2. Looks like you took the proper approach to withdraw from augmentation to Pramipexole, and it is working for you. Good show.

[nightdancer]

Dr. Buchfuhrer answers every email. he just has not updated a couple of things on the new doses of dopamine meds, but he will advise you on that in an email. Right on the front page of the web site there is a gold box that says email, and click on that and go for it. I have known him through hundreds of emails over the last 25 years. There is no one more compassionate or dedicated to RLS patients. he is one of the top specialists, researchers, and he just put out a paper on "Appropriate use of opiates in the Treatment of RLS" He is the BEST. And, you can read all the emails since 1996 on his site. rlshelp.org He is located in Southern California and will take on new patients.

[Casinogoer]

What does of Pramipexole were you on? I have been taking it for years and want to go off of it. I hear that it is very difficult to get off of. How has it been for you? How long has it been since you stopped taking it?