sandy... I felt a stab of dread when I read you are on 3 mg daily of Mirapex. You can't come off that easily and shouldn't do it without a knowledgeable doctor in your corner. Are you anywhere near a Quality Care Center? Can you hunt around for a neurologist who knows about augmented RLS/WED, or do you think your current neuro would respond positively if you brought him/her some information on augmentation?
First - arm yourself with information. The more you understand yourself, the better you can guide your doctor, or guide your search for a new one. Download the Foundation's brochure, the RLS Medical Bulletin - you have to be a member, but it's worth every penny of the (28$? I forget - something like that). And if you can't afford it, you can request a free membership for people in need. The brochure is at https://www.rls.org/member-portal/publications
, in the bottommost section called Information for
There are also three separate pamphlets on augmentation, one of which is free to non-members, the other two require you to be a member to download. If you read all of these, plus the Medical Bulletin - at least the parts on severe refractory RLS and augmentation - you will begin to understand what you're facing and what you need to do.
Also download "Medications for RLS" and "Understanding Iron and RLS". The first one will list the main classes of medications used to treat WED/RLS, which are dopamine agonists, opioids, and alpha-2-delta ligands (a type of anti-convulsant). Clonazepam is a benzodiazepene which has been used for WED, and some people benefit from its use but a lot us just get groggy and have to walk off the RLS with a groggy brain, just makes things worse.
The iron brochure will help you and your doctor understand why your ferritin level has to get over 30, and why you are augmenting .. . taking a dopamine agonist like Mirapex is likely to cause augmentation when ferritin levels are under 100. A lot of doctors don't know this.
There are a number of publications you can download by following the link under my name under every post I write. Some of these can substitute for the Foundation brochures, but nothing can really replace them. Anyway, the link in my signature line takes you to a page on which I've made links to a number of resources on augmentation, and the iron connection in WED/RLS. You should download and read Buchfuhrer's 2012 paper on treatment of RLS .He talks about limiting Mirapex to a daily maximum of 0.25 mg (you are 12 times over that). Older advice is to limit Mirapex to 1 mg (you are still 3 times over that). Many neurologists however, treat WED/RLS patients like Parkinson's patients, and prescribe ever-increasing amounts of this medication in ignorance of the fact that it worsens the WED/RLS condition.
The Mayo clinic proceedings document is a good summary of the role of iron in WED/RLS, to show your doctor. There are also a couple of papers that show that ferritin levels should be much higher in WED patients than the "20" that labs call normal for non-WED patients. (WED is same thing as RLS, bythe way, two different names).
If you have the energy, I think the first step is to download as much of this as you think you can handle, and start reading, asking questions, and coming to understand 1.what augmentation is 2.guidelines for use of dopamine meds in WED/RLS 3.recommendations for treating augmentation 4.how iron levels affect RLS severity and liklihood of augmenting. 5,what meds can be used for WED and in what situations, especially what can be used for daily refractory WED.
Then decide = with our help, if you;d like - how much of this you should lay on your doctor. you will have to be judicious, because no doctor is going to read a stack of papers that you thrust at him. It's best to pick a few papers, and highlight the most important bits beforehand. Plan how you will summarize those bits - he won't actually be able to read them during your appointment. Plan to leave the papers with him to peruse later - once you;ve gotten him intrigued.
Plan how you will bring the whole issue up. Maybe start with the fact that you have had continuously worsening symptoms for X years, and did some research, and found some papers that seem to ring true, but you[d like his opinion on them. Then start your summary, showing him the highlighted parts as you go.
Have in mind what you want to know, and what you will and will not accept. For instance, don;t accept the status quo. Don't accept a dose increase of Mirapex. Don't accept a switch to another dopaminergic drug without a washout period, because your reading has told you that the augmentation will continue (symptom severity will remain elevated) until you have had that washout. Question any suggestion that you withdraw from Mirapex without the aid of an opioid (don't suggest the opioid yourself - ask him to suggest something) - say you're willing to try (if you are) but you need him to devise a backup plan in case the withdrawal is too horrendous because your reading has told you that withdrawal is often unbearable (point to the highlighted part).
Perhaps I am throwing too much at you at once; but if you can download and read as much as possible, my suggestions and examples will begin to make more sense. I think you really need to know more about your situation, so that you can hold your own in a situation where maybe your doctor is (unknowingly) suggesting something that will harm you. And so you can tell when it's time to give up on one doctor and find another.
It is important to get through the withdrawal from high doses of dopamine agonists. It is difficult, but the other side is so glorious in comparison that it is very worthwhile.