I am on a mission to eliminate the need for Mirapex (Pramipexole). I have been taking it for over 20 years and it has been very effective at controlling RLS even though it took a larger and larger dose to achieve mastery over the “dancing”. When my arms started joining in the Herky Jerky and I was experiencing blurred vision, brain fog, a twitching eye, dark urine, sweating, and I could build a skyscraper out of all the Amazon boxes that I send to myself, I was lucky to find this forum and realize that I was augmenting and that I was taking WAY too much medicine (3X.5mg tablets for a whopping daily total of 1.5mg) according to the revised guidelines which (correct me if I am wrong) the lowest maximum recommendation I could find on websites that publish info about various drugs is .5mg daily. My goal is to bid Mirapex goodbye.Three months ago I started cutting the dose. Every 2 weeks I cut another ¼ pill and am now at .75mg. I have been cautioned that the REAL withdrawal starts around .6mg. My experience is that LDN may help me over that hump.
I had received some LDN from overseas for various health issues but was rather concerned about starting it until I had taken my final dose of Pramipexole because I could find no information on their interactions good or bad. That is until lbrosa's positive response to my query. I have also been diagnosed with SIBO and have read that some people are careful to eliminate that condition before starting LDN. Several LDN websites sent me encouraging research that it is actually helping with various digestive disorders. My doctors are not at all supportive but I am 74 years old and I have done the research which is woefully limited and I don't mind trying something that isn't guaranteed to help.
Although LDN is considered non toxic and safe to use, there are certain interactions to be aware of. Seven weeks ago I began taking LDN. The defined range is 1.5mg to 4.5mg and the recommendation is to begin at the lowest dose unless you are taking Thyroid medication. LDN may affect the body's need for thyroid so I started even lower at 1mg but have since read that people with thyroid issues may start even lower (.25mg). It is essential to have thyroid levels monitored and thyroid medications adjusted (possibly lowered!), so I will have them checked next month. Other interactions include alcohol, narcotic medications (Ultram, Morphine, Percocet, Tramadol, Duragesic Patch or Codeine), steroids, and interferon (Beta Seron, Avonex or Rebif). “LDN should probably not be taken during pregnancy.” ~ lowdosenaltrexone.org/gazor...
The one side effect of LDN that was worrisome to me is the possibility of very vivid nightmares which happened to people who started at the higher end of the range. Even at 1ml, my first night on LDN I did have vivid dreams and I have been more aware of dreaming ever since but no nightmares. Another side effect of LDN is disturbed sleep. My son has MS and was in a 2007 trial at UCSF where each participant was given 4.5ml of LDN at bedtime. He said his sleep was so disturbed that he (and many other users,will wait until the morning to take their dose but this is not as effective. Some report that if they start at the lowest dose and increase slowly, they have not experienced the disturbances. Others experience the disturbances for several days and then enjoy blissful sleep. I have not slept this well in a long time.
I have picked a very arbitrary 10 days before adding another .5ml. Many people wait much longer. I am now taking 2.5ml at bedtime.So the burning question is: has it helped with RLS and with withdrawal from Mirapex? I have three observations to share. 1. For 20 years, if I forget to take Mirapex on time (around 6 or 7 is optimum for me), there is hell to pay for a couple of hours around 10-12. The only recourse is a hot bath which is a luxury in the South West United States. Last night I didn't take the Mirapex until 9:30 and at 12:30 I realized that I hadn't had a payback. 2. When I began cutting mirapex's dose, I would experience several days of increased restlessness before my body surrendered to the change. The last two ¼ pill cuts I have not experienced any backlash. 3. and most miraculous, for about three weeks, I have not felt ONE twinge of restlessness. I do take a toke of mj before bed sometimes but not always. It helps me get to sleep quickly and before LDN, it would guarantee 4 hours of good sleep if I had taken my pills on time.
I cannot emphasize enough that this is my experience. It may not be yours. Some people are not helped by LDN.
All my very best wishes to my fellow dancers!!