hi! My first post… just finding out about the dangers of this drug today and I’m in a bit of shock. I was taken off the medication abruptly without warning or notice of side effects/ withdrawal. I have been in agony but thinking it was in my head.
how long does one need to be on this med to have damage to dopamine receptors?
thanks,
Stephanie
Welcome to the forum. You will find lots of help, support and understanding here.
You should never have been taken off it cold turkey. I strongly advise you go back up to the dose you were on and then to come off mirapex (pramipexole), reduce by half of a .125 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you… they won’t refill it.
I was diagnosed as anemic ten or so years ago… supplement to no avail. I am also D3 and B12 and Folate deficient… for same time period.
I am already on pregabalin… I take 150mg (in two doses of 75mg twice a day). How should I up that as I work through the withdrawal?
Thanks again 😊
If you supplemented to no avail, you need an iron infusion, Insist on it and definitely get your ferritin tested. If your doctor won't do it change doctors. Luckily you are in the US where that is easy to do.
Even the package leaflet for Mirapex says to wean off it. You should mention this to the doctor. And this article says it "should not be discontinued abruptly," ncbi.nlm.nih.gov/pmc/articl... You could show it to your doctor and tell him/her you are suffering terribly and want to wean off it. Have you told him this?
Otherwise you are going to be in agony for a long time. Your choice obviously,
I would not increase the pregabalin until your symptoms have settled. Instead I would ask for a low dose opioid to use temporarily (emphasize that to him/her}, preferably buprenorphine which lasts 24 hours to help with your symptoms if you stay off it, Show your doctor the section in the Mayo Algorithm to support this,
I assume you are taking supplements to correct your B12 and D3 and folate deficiencies as they could could make RLS worse,
Until yesterday I didn’t want to wean off it. I wasn’t even aware of the issue as involved in taking it until I started digging into what was happening to me. So there was never a discussion with my Dr about getting off of it. It was the first medication to help me deal with my RLS.
after reading this board I am determined to be free of it. I spoke with their office this morning and they stated there was nothing they could do about it. I could set up an appointment to come talk to him. Which I did.
I supplement my vitamin and mineral deficiency’s everyday… this last three month blood work showed my ferritin and iron levels were so low my Dr wanted to infuse but my insurance company said no because I was at 3. If I had been at a 2 they would have allowed it. 🤦♀️
Are you saying your ferritin is 3? Can you afford an iron infusion yourself?
If not take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
the answers here are so thorough. My question is this: why are you deficient as above? What is your diet like?
I don’t know why I stay deficient. I was diagnosed with IBS around the same time the deficients began.
I supplement everyday, as directed. Take prescription Vit. D and Iron. Supplement with over the counter for the other.
I eat a nutrient dense diet like the one written about in Nourshing Traditions. I do not eat a SAD (standard American diet).
All of my issues began with the IBS diagnosis.
you might want to consider reading an excellent book on oxalate toxicity called: toxic super-foods by sally k norton. It will turn all your beliefs about nutrient dense foods upside down. But you already nailed it. Your problems started with IBS...so why did that develop?
There is a ton of information on instagram about oxalates...i've been on the low-oxalate path for almost 4 years and every single aspect of my health has improved. Low-histamine also. One thing to caution. You cannot simply stop oxalates. You can get into a metabolic crisis. You lower very slowly.. read the book.. and i hope you will find some help there!
I will read it. I do not eat a lot of greens… no kale or mustard greens and when I do eat spinich it’s long cooked. I am aware that the term super good is crap 😊
My diet mostly consist of food my great grandmother would recognize as food. No bags or boxes or food science.
As for why IBS developed… I can’t be sure. it happened the same year we retired from the Army and moved from TX to FL. I was under a tremendous amount of stress. I didn’t know it then but just looking back I see it. At the same time I developed food allergies and autoimmune issues. I’m almost certain treatment for all of that threw my whole body out of its natural rhythm.
I have been able to return to mostly normal with educating myself, eating properly, and exercising appropriately. Along with supplements and journaling my daily life so I am able to track my food and activities.
I am thankful for medication and it’s ability to help but it has also caused massive disruption in my life.
i can completely relate to everything you are saying here....do read the book. And you can find a lot of interviews of the author on youtube. I am happy to refer you to podcasts. It certainly changed my mind. I was eating only whole, read foods, that as you say, your grandmother would have called foods. Nevertheless, my diet was extremely high in oxalates. Eg maybe 2000 mg per day, where a health level might be 150mg. They were tearing my tissues to bits. I had a ton of symptoms. All of my markers have improved dramatically. Foods might have a lot of nutrients, but that does not make those nutrients bioavailable. And ideally, if our food was nourishing us, we would not need supplements..but that is another story, isn't it? Good luck with learning more. It might change your mind. It sure did mine!
That is so true!
I have found that the foods do have a lot of vitamins and minerals but they aren’t Toni’s via digestion because of the way it’s cooked or eaten raw.
Thank you for your support and time. It means so much 😊
😎
When did you go cold turkey? Are you through the withdrawals? If so, it's probably best to stay off it. However, if you're still suffering and the withdrawal hasn't settled ( you should return to the status before starting them) then it's probably better to go back on Pramipexole and reduce very, very slowly as per SueJohnson schedule.There's no research on what permanent damage is caused by these drugs, but there is an article which shows pregabalin and gabapentin are often ineffective if patients have been on Dopamine Agonists as first treatment. And the top experts believe pregabalin AND iron infusions don't work because our Dopamine receptors have been permanently damaged.
What replacement treatment where you offered?
It's very dangerous and negligent for a doctor to advise cold turkey withdrawal. The med leaflets make that clear.
They refused to refill last week.
They offered nothing in replacement. They never even discussed how dangerous it was to begin with.
I am still suffering. This isn’t the first time. I’ve taken myself off of Zoloft and Xanex. I’m going to work through. I fear what long term damage may have already happened.
Thanks so much for your response 😊
I suggest you consult a lawyer. It's dangerous to stop these meds cold turkey.Did your doctor refuse to write a new prescription or did the pharmacy refuse to prescribe? Why would they do that without reason?
The office simply stated that it would no longer be prescribed.
That was the all they said. When I contacted them over the weekend they said there was nothing they could do and I should seek out patient help.
This is pretty standard practice in Florida. I have been living here since 2013 and this is my third Dr in that time.
When I wanted to wean off Xanex they did the same thing… suggest I get out patient help. But in Florida no out patient clinic will help you if you aren’t 90 days off Xanex. So I had to go that alone. I feel like every Dr I’ve had since moving to Florida gives prescriptions without any discussion on side effects and withdrawal issues. It’s highly discouraging.
There's a really good sleep clinic in Jacksonville. Alternatively, Dr Berkowski runs a clinic there.Contact either one and they should be able to help.
I agree with Joolsg on the sleep clinic she mentioned or Dr Berkowski. The only problem with Dr Berkowski is he doesn't take insurance.
Jacksonville Sleep Clinic 6930 Bonneval Rd #2 (904) 854-6899 jaxsleepcenter.com/
Horrible treatment! Print off anything alluded to in Sue and Joolsg's responses, and bring an advocate to help state your case. At least threaten that you have retained legal counsel.
Iron is probably a big player in your RLS, so could SIBO (Small Intestinal Bacterial Overgrowth). SIBO could be interfering with iron absorption. When this gets sorted out, do try iron supplements again - Ferrous Bisglycinate Chelate is a non-constipating formulation. Also consider the same supplement as a patch (bypasses the digestive system). It is available from PatchMD. However, studies with athletes have panned the effectiveness of transdermal (patch) delivery of iron.
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