Renegade doctor?

[dgarmaise]

Hi, all. I have not posted in a while. The neurologist that I see here in Thailand, in Bangkok, has some views which I think are out of the mainstream with respect to dosage of the medicines to treat RLS. Regarding pramipexole, she maintains that the dosage range is 0.25mg to 4.00mg, and that if 0.5mg is not working for me, I should titrate upwards until I reach a dose that does work. It seems to me, from what I have read, that (a) clinical trials have not shown any efficacy above the 0.5mg dose and (b) there are issues of rebound as one escalates the dose. Is that still the prevailing view? Or are some doctors advocating increasing the dose beyond 0.5mg? The doctor has similar views about the Neupro patch; she says it is okay if I go up to 8mg if that is what it takes to control my RLS. I have been taking a combination of 0.4mg pramipexole and 100 mg tramadaol, all at the same time in the evening, but my RLS is not under control. I tried the patch for a while, but encountered some problems; also it is mega expensive.

[badnights]

The dosages she mentions are fine for Parkinson's, but not for WED/RLS. High doses of a dopamine agonist increase the chance of augmentation, not of rebound. Augmentation is when the symptoms start earlier in the day, and are more intense, spread to more body parts, or start sooner after bringing the body to rest (sitting or lying). Augmentation is rare, or perhaps unknown, other than with the particular combination of dopamine agonist drugs and Willis-Ekbom disease. Rebound, on the other hand, is when symptoms increase for a period of time after the meds wear off, and is a known phenomenon with many medications.

My second signature link (below my name at the bottom of this post) leads to a post with a number of links. The one called Buchfuhrer's 2012 paper has a section at the bottom of page 780 where he cautions on the use of DAs and recommends lower maximum doses (0.25 mg pramipexole and 1.0 mg ropinirole). This would be a good paper to print, and mark the appropriate passage with a highlighter, to show your doctor - ask her opinion on it.

No one is recommending higher doses. The lower recommendations have been published as far as I know only in that paper by Buchfuhrer and in the book by Lee, Buchfuhrer, Allen and Hening (p 161-162). Drs. Earley and Allen at Johns Hopkins are cautious of DAs and endorse the lower maximums, and believe that no one should go back on a DA after augmenting on it, but I don't know if they have published those opinions other than in the book.

It is also important to have your ferritin checked. Ferritin levels below about 70 have been linked with a greater risk of augmentation, as well as more severe symptoms. The recommendation is to have ferritin over 100 (both the same Buchfuhrer paper, and a Johns Hopkins webpage that I reproduced at the same place - link is just below the Buchfuhrer one). The IRLSSG is a little behind the times, and recommends ferritin be at least 75 in RLS/WED patients. Oral supplements or IV infusions can raise ferritin and relieve symptoms (partly or fully) for a time.

[dgarmaise]

Just to correct something in my first post – I am currently on 0.5mg of pramipexole and 100 mg of tramadol.

[ViewsAskew]

Agreed with what badnights posted.

I believe that most doctors are NOT up to date on this. The info in badnight's signature is very new in medical terms (most new info takes up to 15 years to become common knowledge - this info is 1-3 years old).

[dgarmaise]

Thanks, Anne and Beth for your responses. I am not sure whether I will see the neurologist in Bangkok again. She is emigrating to the US – Hawaii to be precise, in a couple of months. I think the advice she has been giving me is just plain crazy. I have been having a rough time lately with my legs. I think the time has come to get off pramipexole (or off DAs, I should say). I have seen discussion on this forum of a strategy of stopping the DA cold turkey, using opioids for a couple of months, and then trying an anti-convulsant. For me, the problem is that I have very little chance of getting any doctor in Thailand to prescribe me an opioid. I mentioned the possibility once to a neurologist here in Pattaya and he practically fainted from the shock. So, I may just have to go back to Canada if I want to implement that strategy. Or do some people go directly from a DA to an anti-convulsant?

[ViewsAskew]

Thanks, Anne and Beth for your responses. I am not sure whether I will see the neurologist in Bangkok again. She is emigrating to the US – Hawaii to be precise, in a couple of months. I think the advice she has been giving me is just plain crazy. I have been having a rough time lately with my legs. I think the time has come to get off pramipexole (or off DAs, I should say). I have seen discussion on this forum of a strategy of stopping the DA cold turkey, using opioids for a couple of months, and then trying an anti-convulsant. For me, the problem is that I have very little chance of getting any doctor in Thailand to prescribe me an opioid. I mentioned the possibility once to a neurologist here in Pattaya and he practically fainted from the shock. So, I may just have to go back to Canada if I want to implement that strategy. Or do some people go directly from a DA to an anti-convulsant?

I could be wrong (and if I were you, I'd write to Dr Buchfuhrer to get his opinion), but I am pretty sure I've read where Dr B has said that opioids reduce the issues - that you're MUCH better off using them than either nothing or anything else. I think that they must do something to help resolve the issue - something that other things do not do. But, that's just my guess.

In the last week or so, one of our members wrote that it's been a year since she quit cold turkey and she still has issues. I used methadone and the worst was over in a few weeks.

[jul2873]

dgarmaise, I am not a doctor, and I offer this suggestion only because you seem to be in a tight spot--a place where you can't get a script for opioid's and the DA's are not working.

Largely because of readings on this board, I have been very afraid to go the DA route for my RLS. Eight months ago I started using a mild, non-prescription opioid called kratom, which can be bought on the internet. It's legal most places (like the U.S.) but I'm not sure about where you are. But if it's legal, you can order it through Amazon

http://www.amazon.com/Maeng-Powdered-Gr ... s=maeng+da

Many other places on the Internet have it as well. I put a half a tsp in some orange juice, let it sit for at least ten minutes so it dissolves, and then drink it. I do this usually four times a night, and it allows me to sleep pretty well. I usually get 6 to 7 hours of sleep and am able to nap during the day as well. Apparently it works on the same receptors that morphine does. The only side effect I get is constipation.

Good luck to you. I hope you find relief.

[dgarmaise]

Thanks for the suggestion re kratom. I did some research on the Internet and discovered that the kratom plant is widely grown in southern Thailand and many people there use kratom. However, it is illegal, for now at least. You might be interested in this article: http://www.scientificamerican.com/artic ... m-be-legal

Anne, do you know whether some people start the anti-convulsants while still on the DAs?

[ViewsAskew]

Thanks for the suggestion re kratom. I did some research on the Internet and discovered that the kratom plant is widely grown in southern Thailand and many people there use kratom. However, it is illegal, for now at least. You might be interested in this article: http://www.scientificamerican.com/artic ... m-be-legal

Anne, do you know whether some people start the anti-convulsants while still on the DAs?

As far as I know, they do, but it's not what is suggested when someone has augmented. I have no idea if they are used when someone has augmented - I'd write to Dr B to find out.

[badnights]

Hey dgarmaise. The problem with starting an anti-convulsant just before or while withdrawing from DAs is that your symptoms will be stronger than normal and hard to control. The anti-convulsants are not much good for intense and long-lasting symptoms such as those you are likely to experience during DA withdrawal. You would need such a high dose that the side effects would become intolerable. Very few people seem to be able to treat their WED successfully with only an anti-convulsant.

Dr. Buchfuhrer posts the emails he receives and the replies he gives on the website he maintains for the Southern California WED Foundation Support Group, at www.rlshelp.org. You can browse through those emails, and if you choose to, you can email him at somno@verizon.net. He is an extraordinary man who has reached out to suffering people to give his own time and expertise. He is also willing to communicate with your doctor, if your doctor is willing too.

I don't know that the situation here in Canada is any better than Thailand as far as physician education goes. It's pretty much luck of the draw how hard you have to work to get access to a physician who either knows or is willing to learn about treatment of refractory WED/RLS. Your doctor's attitude can be found all over here.

Have you considered supplying her with some medical papers about augmentation and its treatment, like the ones I mentioned before? Some doctors get all defensive but many are willing to look at information provided by patients. They can judge its validity for themselves, so it's worth a try.

[dgarmaise]

Thanks, Beth. I did write to Dr B and he replied. He said pretty much what you did, that without an opioid I would have a lot of pain/discomfort. I agree that physician education is important everywhere, not only in Thailand. If she were a GP, or a neurologist not specializing in RLS/WED, I might try to educate her. But she specifically specializes in limb movement disorders. I mentioned to her on two occasions that my research on the net turned up nothing in support of the idea that patients should increase their dose of DA to whatever level controls their symptoms; and I mentioned that the prevailing view is not to exceed, say, 0.5mg of pramipexole (some would say even less). She did not express any interest in finding out what I had learned from my research. I am in Pattaya and she is in Bangkok, about a two-hour drive away. I don't expect to see her before she leaves for the US in March or April (she is emigrating to Hawaii). So, WED patients in Hawaii can have a go at educating her! Regarding doctors in Canada, I am assuming that it will be possible to find some who will prescribe opioids for my pramipexole withdrawal. However, now that I think about it, there have been many posts on this forum about doctors who just don't get it. So, maybe I better check this out more before I jump on a plane back to Canada. Also, I will inquire here in Thailand about whether it will be possible to be prescribed an opioid.

[ViewsAskew]

David, Beth likely knows more, as she's in Canada, but it seems to me that we've not heard a lot from our Canadian members re luck finding doc to prescribe strong opioids for this. As always, there are a few here an there, but seems most can't prescribe methadone (which is what is most commonly suggested). If I've got this wrong, am sure Beth will correct me.

Beth has a doc who gets it - she travels to Edmonton to see him, IIRC. My guess is that you might find docs in Vancouver who can/do prescribe methadone, purely because of the heroin use there. But, they may only be at drug clinics. In Chicago, I've had to battle constantly. I talked to a drug clinic and they said they never prescribe to non-addicts, but that I could call their director and explain my plight. The guy on the phone sounded empathetic, but I never followed up - been down so many dead ends already, I didn't have the energy for another.

Good luck, whatever you do. And, keep us informed - we want it to work out for you.

[dgarmaise]

I saw another neurologist here in Pattaya. (I live in Pattaya, a two-hour drive from Bangkok. The other neurologist I was seeing is in Bangkok which, generally, has much better hospitals than Pattaya.) My GI doctor, who is slowly becoming the GP I lack and so sorely need here in Thailand, recommended this other neurologist when I told him how much discomfort I have been in for the last few weeks (like not sleeping at all the night before my appointment with the GI). One thing that I'll say for the Thai medical system is that access to the doctors in excellent. When the GI recommended that I see the neurologist, I asked for, and got, an appointment with the neurologist right away. (I mean I saw the neurologist 15 minutes after I saw the GI.) The neurologist is young and received some of his medical training in the US. He had already read Dr B's 2012 paper, so I give him high marks for that. We discussed various options. He is not likely to prescribe any opiates for me. His view, he said, was that exposure to even the tiniest bit of opiate can lead to addiction. (I could have said "Well what about tramadol?" It is practically an opiate and I am sure I am addicted to it, but that doesn't mean it is not a useful therapy. Anyway, we agreed that the immediate problem we faced was that my current drug regimen (0.5 mg pramipexole and 100 mg tramadol, all in the evening) was not enough to control my symptoms. He suggested adding gabapentin. So he prescribed me two week's worth of gabapentin at a starter 100 mg dose. (I had tried gabapentin about five years ago, and couldn't abide the side effects. But at that time, as I recall, we were upping the dose by 100 mg a week heading to a target of 1800 mg –– again as I recall. I believe I gave up on it around the 1200 mg dose. But I was willing to try it again. Beggars can't be choosers.) I have been on the gabapentin for four nights now, so it is too early to draw firm conclusions. The first night, I felt that it definitely reduced my symptoms; I got a good sleep from about 10 pm to 3 am, at which time I awoke feeling quite dizzy. The rest of the night was not so good. The dizziness did not fully dissipate until around Noon. I was not able to work at my computer in the morning; just could not concentrate. Obviously, the hope is that the side effects will be temporary. The third night, I made a mistake: I forgot to take the medicines I usually take just before bed, including the gabapentin, and it was not until three hours of sleeplessness later that I figure out what I had done. (Don't you find that coping with this disease and all of its side effects leaves you in a fog a lot?) Whenever I significantly alter the time when I take my medicines, my RLS reacts badly; this time was no exception. It is 4 am on Night 5 as I write this. My triple combination seems to have worked in terms of suppressing my limb movements, and perhaps some of the pain in my legs, but I still have too much pain and that is keeping me from getting a good sleep tonight. It may be that my body is still trying to get back to "normal" after the incident of taking my medicines late. Or it may be that I am going to have to up my dose of tramadol. I am assuming that the tramadol is more effective at combatting the pain than the DAs. Do we know that for sure? During these past few weeks, I already upped my dose of tramadol from 100 mg to 150 mg: 100 mg in one dose in the evening, and 50 mg at some other time (it has been varying).

[ViewsAskew]

I feel for you, David. It's so hard to make changes with this. A with you, my symptoms go nuts when I make changes.

I hope this helps. I AM glad that he'd read the paper and is really trying. Good for him.

In terms of pain, it's tough. As I understand it, the only pain you should feel with WED is a painful sensation that goes away with movement. Pain is a hard word to use - Dr B says that he thinks of WED pain is the pain you'd feel if you were being tickled and the person wouldn't stop. It eventually hurts. I honestly don't know - I don't feel any pain. My is uncomfortable, but not painful. Mine drives me crazy, but not like pain.

If you have WED, the DAs should remove the sensation, however it's experienced.

Do that make any sense?

[dgarmaise]

It's not a sharp pain, Ann. I describe it as a dull ache. Also, when I experience this my legs feel really heavy. I suspect that the pain you describe is related to the creepy crawly sensations that many people with WED report. I never had these. Maybe I have been misdiagnosed?! I suspect that it does not matter, that the treatment would be the same whatever the diagnosis, but I could be wrong.... This morning, I upped my dose of tramadol from 50 mg to 100 so I could get a few hours of relief. It worked. But now I have what I describe as a "drug headache." It is my body saying "Enough already with the bloody pills!" Of course, maybe the fact that I am listening to Chicago blaring from my speakers is not helping. Hey. Maybe there is some form of music therapy for people with WED?