Is your DA causing augmentation?

[ViewsAskew]

Viewsaskew, I may need to find another physician, because my current provider seems to think that what I am doing is my only choice. Badnights, I have not had my ferritin checked, so that is something that I will definitely bring up during my next visit (in March). Thank you for the information, I really appreciate the feedback.

Not a position I envy - and I have had to do it several times over the years. It saddens me when I think of the knee-jerk reactions from docs who will not educate themselves and blame the patient instead of learning. I realize we all do it - human brains are not logical - but when it is a doctor who is controlling what happens to you, it is irksome at the least and potentially harmful.

Do you live anywhere near any of the RLS Quality Care Centers? Or do you have the ability to get to one? That has made the difference for so many of us. A few of us have had luck educating doctors around us...but that seems to happen less frequently that I would hope.

[fuz_mind]

@rjdishon

A note of encouragement: the withdrawal is worse than what you're experiencing now, but when it's all over with, your symptoms will be much better than they are now. You will be able to sit through meals again, and sit down to read and work. There is a chance that they'll be worse than they used to be before you started dopamine-type meds but they'll still be better than they are now. And that will never happen if you stay on the dopamine meds.

EDIT: you might be able to re-introduce a dopamine-type med AFTER you've gone through the withdrawal to let your body re-set (so to speak), and after you've raised your ferritin if it was low. As long as you keep the dose low, you are less likely to augment - but we've noticed that augmentation is easier the second time around, so be aware.

I can testify to the above. I went on a drug holiday, did IV iron, re-introduce ropinirole. managed to get my dose down from 1.25mg to 0.5mg, and I was functioning much better on a lower dose than I did before. The withdrawal is terrible and it was impossible for me to work during the withdrawal. but I would do it all over again if I need to because of the improvements after the body re-set. I hope sharing my experience helps!

[Bronwen]

Indeed yes. I have had WED all my long 73 tears, slowly becoming worse over time. No-one had a name when I was young, or help. (Except quinine, and we all know about that). I did not even speak of it until many decades later. So you had it as early as you can remember, it's just there, part of your life.

When the symptoms became beyond unbearable was just about the time the DAs were being recognised as the Wonder Drug. Augmentation was not even a word then.
In retrospect, augmentation kicked in almost immediately, but because I was freed from the worst of the symptoms I thought it was just the pattern of the disease becoming worse over time, as it always had.
Once I became truly aware of the horrors of this concoction-from-hell, including the other toxic side-effects, I determined to wean off a dose that I had kept as low as humanly possible.

When I started experiments with cannabis quite recently, I tried to reduce my dose by 25%. All hell broke loose, a real doozy, the crying sort.
I would love to know from this very clued-up forum if there is a protocol for weaning. 2%. 5%, 10% ? Over what period? My dose is still low, but I am acutely sensitive to chemicals of any sort.

Now, when symptoms get out of hand, I have a small bottle of liquid methadone to get me past the breakouts. It is quite brilliant. And, I see that as I wean off DAs, there might be methadone in greater quantity in my future. Bring it on!

And bless Dr Willis and all the other (not enough) physicians who take this misery seriously.

[stjohnh]

Bronwen,
what is your current dose of dopamine agonist, I think you were taking 0.25mg pramipexole?

Generally it is better to just stop cold turkey unless you have been on an extremely high dose. The horrors of getting off pramipexole just last longer and are generally not less severe if you try tapering. This of course will generally cause about a week of the worst symptoms that you've had in your life, very difficult to get through but it is crucial. Use the methadone to help get through this difficult phase.

Cannabis does help quite a few of us with RLS sleep, however it doesn't seem to help much for the urge to move symptoms. Generally the pure CBD or high CBD preparations that are generally recommended for sleep do not seem to help people with RLS much. We need to have the THC present in an amount that usually causes at least a little bit of a stoned feeling to have it help sleep.

[Rustsmith]

Bronwen, if you think that you have methadone in your future, now is the time to have that discussion with your doctor. If methadone is the replacement treatment for after you get off of pramipexole, starting it now will dramatically ease the withdrawal problems you will experience with stopping the pramipexole.

[Bronwen]

Thank you StJohn and Rustsmith, I am most grateful for your input.

On Friday I took a file full of information from rls.org, PubMed and various other sites to my GP.
He took one look at (very small) me and my (very fat) file and said - 'Here comes trouble!'
I said - 'You have no idea Doc'.
Last month I had insisted he measure my ferritin, but he had not seen me since.
My level is 20.

He sat and listened to every word of my epically long lecture on dopamine, ferritin, methadone, DAWS, glutamate, GABA, Dr. Earley and on and on. He did not interrupt me once.
After hearing the evidence, he said- 'When would you like to start the iron infusions? Now?' I said - 'Now would be good.'
So, he infused 200mg of iron sucrose over three hours and will do 300mg more next week. Then check in a month or so.

I am fortunate to have a doctor whose ego does not get in the way of new information, and he rather enjoys uppity web-searchers like me.
Now he has my copious file, and I hope it may help other patients.

So, given my ferritin levels, it would seem wise to wait until at least the first course is complete before doing anything else. Or is that the terror of withdrawal speaking? What would be your advice?

I gave the doc my methadone lecture about two months ago. He baulked a bit, of course, but I insisted he keep searching through his desk reference, and he dutifully did so, and he found it and gave me a little. I won that battle without difficulty - except for finding a pharmacy to dispense it. There were a lot of hilarious interactions, given the fact that I am 5 ft 2in, and weigh about 105 pounds, and am seventy-three.

Woohoo.

I first found the methadone information here, some time ago, and I was startled, but it is what started my long hunt for all the facts on WED that I could glean, and take back my agency. It is thanks to people like you that I have easily won two significant battles. And my doctor has learned some new lessons with enormous grace.

I will keep you posted. Now I must start the first chapter of 'My Great WED Novel' - or have I just done that? Thanks for your endurance.

[legsbestill]

Wow! Well done you and kudos to your GP. I really hope the infusion helps enormously. I had a similar experience with my GP except rather than listen to me/peruse my fat file he said resignedly ‘What do you want?’ And he now mostly prescribes me whatever i ask for for my rls. They are rare though - medical professionals like that.

[Bronwen]

Indeed Legsbestill, I hope I am one of those whose symptoms resolve for a while.
Then I can devote my time to learning to sleep again.
Few people seem to mention insomnia as a primary side-effect of pramipexole, although it is mentioned over and over in the package insert. RLS Insomnia + DA Insomnia = Misery

[Rustsmith]

Wow is right. Congratulations on educating one more doctor on the proper way to treat RLS. I am so happy that you have one whose ego isn't so big that he can admit that there are still things to learn and that educated patients can be a resource.

[stjohnh]

...Then I can devote my time to learning to sleep again.
Few people seem to mention insomnia as a primary side-effect of pramipexole, although it is mentioned over and over in the package insert. RLS Insomnia + DA Insomnia = Misery

Bronwen, unfortunately the insomnia problems that people with RLS have are much more complex than simply the insomnia that is associated with dopamine agonists.


RLS causes two primary problems, urge to move symptoms, and insomnia. They are mediated by completely different pathways, although both are influenced by adenosine. People with relatively mild RLS notice mostly the urge to move symptom and it comes on earlier in the disease progression. I hope you are correct in that your insomnia problems get better when you get off the dopamine agonist, however there is an excellent chance that you will need to do something extra to treat the insomnia. The insomnia related to RLS is not responsive to most usual prescription sleeping pills.

[Bronwen]

Gosh!
Thank you for that information. Indeed, my insomnia is not much assisted by benzodiazepines, if at all.
I did not know there was an association.

Sleep, for me, is totally hit-or-miss. I never know if I will get sufficient sleep, or not. It does make life very difficult when you're cannoning off the walls with exhaustion. Today, as an example, I could not get out to buy food, as I knew I would be a danger on the road.

But, the definition of madness, I keep throwing good money after bad, hoping for new outcomes to the same actions.......
Can you point me in a more hopeful direction? Something I can take to my GP?

Must I follow the adenosine link?

This is not good news, but I am glad not to fall into a Pollyanna trap.

[Rustsmith]

Bronwen, the adenosine approach is still very much a situation of research in progress. Two members of this board have convinced their doctors to let them try it. Both (Holland is one of them) found that they had to experiment just to find the right dose as well as how to adjust their other meds.

As for sleep, the medications that have the best chance of providing some relief for the insomnia are the alpha-2-delta meds (gabapentin, Horizant and Lyrica). These are thought to treat the other pathway Holland mentioned (other than the dopamines for movement). The second "medication" that many of us have found to be useful is marijuana. Smoking it provides an immediate change, but it wears off very quickly and smoking isn't good for other reasons. So, a number of us use edible marijuana (candies, cookies or brownies). If you have a source of marijuana, there is a thread on marijuana here on the board that provides detailed instructions on how to make your own brownies.

[stjohnh]

Bronwen,
Try 25mg gabapentin plus 5mg THC as edible marijuana at 8pm. Four hours later take 1/2 of those doses.

If no better sleep, the next night take 50mg gabapentin + 10 mg THC for 8pm dose. Four hours later take 25/5.

Use caution as the stoned feeling and sleepiness May impair your balance. Be sure you have an easy way to get to your bathroom and easy way to hold on to something. Falls are very bad.

It should be pretty easy to get the gabapentin prescription from your doctor, it is commonly used to treat RLS anyway.

You mentioned cannabis in a prior post, so I imagine you still have some from your initial purchase. What form do you have? Do you know how many milligrams of THC is in it?

[Bronwen]

What is the proper form of address here? Steve and Holland, or Rustsmith and StJohn? I would like to be correct.

Thank you again, I will take this information to my GP today.

I have acquired cannabis of various sorts - Indica and Sativa oils, some RS black sludge and some RS suppositories. the latter will be high in THC, I think 10mg. I did try one suppository, and am not aware that I slept better, and that I was a bit wobbly when I got up.

What is your view of the argument about rectal absorption? Does it, or doesn't it? If you say no, then my suppositories will be my edibles.
And how much THC is there in the RSO, in rice grain measure?

I am becoming more and more aware that we have to protect our inflamed brains from further harm, and that as an anti-inflammatory micro-dosing with cannabis daily is a good idea.

My DAs did not work last night, so I took 10mg methadone. My upper back starts to be involved, which is new. Methadone really is a life-saver.

Well, now I must improve my cooking skills. I am not much of a baker. I live a no-wheat, no-sugar diet, so no cookies. Only in America.

Horizant has not reached here yet. But I still have to come of the other stuff first, do I not? I am very small and very chemical-sensitive, best not to add too much to the brew. I think Dr Earley said to be completely free of DAs, and support with methadone before trying another pharmaceutical like gabapentin. Yes? No?

Thank you thank you.

[stjohnh]

Bronwen, I think it is customary here to use the person's first name if they sign their posts with their first name. The username, the one in the upper left-hand corner, like Bronwen for you, is used if the person making the post doesn't indicate their real name. I personally like using people's real names, but there are lots of folks that make posts that would rather remain anonymous. So for Steve and I, use Steve and Holland.

I agree that it may be best to get off the dopamine agonist and onto methadone as a temporary measure before adding other medications. Part of it depends on whether the plan is to go on methadone long-term or try to manage your RLS without opioids.

I really don't know anything about rectal absorption so can't comment on that.

If you have Horizant coming, then you really don't need gabapentin. Horizant is a relative of gabapentin, it should work just like gabapentin for you, the main disadvantage of Horizant is that it is very expensive.