What’s a good rule of thumb to weaning off Pramipexole?

[tuckerdog109]

Pramipexole and Lyrica has been doing great for past 6 weeks and now, not so much. Too many side effects with the Pramipexole .

[SueJohnson]

To come off pramipexole, reduce by .125 mg 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. But in the long run, you will be glad you came off it. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

[TeddiJ]

If you are suffering and can't get an opioid prescribed to help get you through the tapering, order (or buy at vape shop) some red vein kratom powder to get you through. It stops rls within minutes and has been a lifesaver to many of us. I use it every night, although it is not a great long term solution. I am using and trying many supplements, too. Originally, I was prescribed methadone to get me off the ROP and PRAM. It works but has a whole other set of issues that go along with getting it, taking it, and also continuing it long term.

Hang in there and best of luck!

[pennygates in reply to TeddiJ]

I read with interest your reply, when you mentioned the vape product, Red vein kraton powder, and would be interested in trying it. I dont 'vape' but will try it if it helps from time to time. Can you tell me is it easily available? Hope you dont mind me asking.

[TeddiJ in reply to pennygates]

Hi. Sure-no problem: I don't vape either and had never heard of it before this forum. You just put a 1/2 to 1 teaspoon of kratom or hirsuta powder in water or juice and drink it. There are capsules, too, but they take longer to work.

It is easy to get in many countries online or in vape shops. If you are in the UK, you can order in online as "tea" from Scotland, I think Joolsg said.

[pennygates in reply to TeddiJ]

Hello, many thanks for your help. I have googled it. There are several sites offering it in Europe, Im in northern England, and can source capsules through Holland & Barrett, a well known UK company. That might be a good place to start, as suppliers can vary in quality and good practice. I noted that the capsules are not as effective, but the suppliers are more reliable. Will let you know .

[pennygates in reply to pennygates]

I also found an online article in something called Kratom Times, which you can read, it has some good advice about how to take it.

[TeddiJ in reply to pennygates]

Hi! You're welcome! Yes, it is so helpful for those desperate times.

The capsules are effective, it's just that in the middle of the night, when you really need the rls to stop, they take longer to get into your system. But, they still work. I take them preemptively.

Today I ordered tablets, which seem to be new at the company I use. They also work differently than the powder or the capsules. The powder is FAST, works within minutes, so I recommend that you still try to get that, as well. It is messy and gross but fast.

You are right in that we want the source to be lab tested and as clean as possible. Yes, let me know how it all works out!

[pennygates in reply to TeddiJ]

Hi, i made a mistake with the capsules. When i looked more carefully it wasnt quite the same product from Holland and Barrett, so i will have to get some powder imported, which could be very tricky. Will try though. I've had a long and difficult journey with rls, like many others. Im able to take opioids now, but they arent prescribed for that condition, I have severe arthritis and Crohn's disease, so get opioids for pain. They help, but still have rls badly most days and nights. I was prescribed pramipexole 13 years ago, which worked well, until I found they didnt! My GP told me rls isnt an illness, and to stop making a fuss, as its just a minir irritation. I complained about his attitude. No knowledge at all. He stopped my pramipexole suddenly, no tapering, and put me on Gabapentin. I ended up in hospital for ten days with severely swollen legs. They reinstated the pramipexole, but I know it's not helping much now. Im not sure where it will end up , so hoping Kratom might be a help.

[pennygates in reply to pennygates]

It's so good to speak to someone who understands the condition so thoroughly. Ive read about others too, many who have a good knowlege and experience. No one else I know personally has it, most people never heard of it.

[TeddiJ in reply to pennygates]

Yes, this forum is a lifesaver! It is so important to get that support and understanding when those around you just do not get it.

You poor thing-you have really been through it! Sounds like you went through a terrible withdrawal already. For me, when I went back to the DA drugs after getting off them, they didn't work very well. Augmentation will happen again quickly.

The opioids should help you but I know from this forum and experience myself that not all of them work the same for RLS. Kratom seems to work for most. As I said, I think you will have to order it as "tea" and I think it was from Scotland. Or ck the posts from Joolsg-she said something about this not long ago. "Hirsuta" is another powder that can work well.

You definitely need to ck this forum for doctors in the UK who actually do help with rls and hopefully you can get on BUP or another opioid that will cover the rls and your other issues. Kratom is opioid-like and is a great backup!

[pennygates in reply to TeddiJ]

Thanks for you help and support. I'm amazed at the knowledge on this forum. Just finding my way around it. Never been part of a forum before. It is really comforting to know so many people who have this awful condition. I've been on my own with it for so many years and never met another sufferer yet! The UK is badly behind with knowledge of it especially primary practice. GPs just don't have the expertise, even if they are sympathetic. I have given two print outs to them from John's Hopkins and Mayo Clinic, but they gave them back to me! It's almost like they don't want to know. The ferritin issue is the hardest to overcome, they just don't get it. It is hard to overcome that kind of resistance.

[Joolsg in reply to pennygates]

Sorry to jump in your thread. Your doctor sounds appalling. RLS is a serious neurological disease. It's not taught in the UK which is why he dismisses it. What he means is he knows nothing about it.

Stopping your Pramipexole cold turkey is dangerous and medical negligence

I'm gathering evidence to present to the Royal College of General Practitioners to show that lack of teaching leads to dangerous situations for RLS patients and your case is very common.

Would you be happy to contribute

In the meantime, as Pramipexole isn't helping, you're probably suffering augmentation ( increase in severity of RLS) and will need to reduce by half a 0.088 pill every 2 weeks. 4 weeks before you drop the last dose you start gabapentin or pregabalin at night. However, if you ended up in hospital with swollen legs from gabapentin, you will need a low dose opioid and your GP will be USELESS so ask for a referral to Prof. Walker at Queen Sq. He does phone appointments, knows how severe RLS is and will refer you for iron infusions if necessary and prescribe low dose opioids

To help with withdrawal symptoms kratom helps but is illegal in the UK. You can buy it from Netherlands and they post quickly and discreetly as herbal tea. Red vein borneo is what you need. You take half to one teaspoon at night mixed with orange juice as it tastes foul. It will help when withdrawal from Pramipexole gets really bad.

kraatje.eu/

[pennygates in reply to Joolsg]

I'm pleased you picked up the thread. I was originally referred to the Neurology Department at Newcastle, at a large and prestigious teaching hospital about twelve years ago. I was prescribed Pramipexole there. She suggested a yearly review with her, but another GP said that we couldn't 'keep bothering busy people' and refused to refer me, when I started to have problems after two to three years. There have been so many twists and turns with my health over the ensuing years. It was my psychiatrist who originally referred me, not a GP. I have bi-polar disorder. Since then I have developed Crohn's disease which took 6 years to diagnose, and nearly killed me, until I had an emergency resection of the small bowel last year. Then arthritis has become much more severe. I mention these as they too have had a major impact on my general health. RLS was at the bottom of every doctor's list during all of this. It's difficult to see the same doctor in the UK, almost impossible at times now to get an appointment since Covid 19. You just take what you can. The doctor sent an email eventually to the hospital asking for advice. She was told to stop Pramipexole immediately nd start Gabapentin. This is what kicked off my symptoms. I didn't see or speak to the same GP twice. The doctor I saw took the advice literally, although I had never met him, just a phone appointment, and he was the one who told me to get a grip basically and that it wasn't like I had a real disease, that it was merely a mild tingling etc etc. I reported him to the practice manager. Anyway that was how I ended up in hospital. I just can't tolerate either Gabapentin or Pregablin. I had several falls with both of them, although I was on Pregablin for several months. The side effects were too severe for me to cope and did nothing for RLS symptoms at all. I'm already taking low dose opioids for my other conditions and they do help. I recently offered my GP a copy of the Algorithm from the Mayo Clinic. He read it briefly and upped my opioids, but gave me back the information. He has asked for blood tests, but I know from experience , that they don't follow the advice. It's just a general test for anaemia. I get anaemic at times and have had several infusions of iron. However most British GPs don't go further than that. They disregard the advice about ferritin levels etc. It's a joke. However the iron infusions didn't help my RL. This GP has been sympathetic, and wants to help, but wouldn't keep a copy of the Mayo guidance. He told me to let him worry about the blood test results. He meant it kindly, but still I can't get the advice taken up by any GP. I would be willing to get involved but I'm afraid I will suffer if I upset my GP practice. Its so hard to get into a good practice in the NHS. Patient lists are very high. This GP has at least recognised that RL is at the top of the list now, and has made a follow up appointment in two weeks to discuss the blood test results. But his experience of the condition is very low. He has also recognised that I have stayed away from the practice, as I hadn't been followed up on previous illnesses, leading to surgery.

[pennygates in reply to Joolsg]

I would like to contribute. Thanks for the advice about Kratom too, I will follow this up. The support on this forum is outstanding. For the first time I feel recognised. Thank you for your support, it means so much.

[Joolsg in reply to pennygates]

I'm so sorry about this Penny. A catalogue of poor treatment and no follow ups. Crohn's disease is why you are anaemic and is very possibly why you developed RLS initially as it causes poor absorption of iron. Repeated iron infusions would help but will only mask the severe RLS which is worsened by the pramipexole. Hopefully, once you're completely off pramipexole, the opioids will start to help. Further infusions would also replenish the iron lost through your gut. You will need your meds for bi polar to be reviewed to see if there are any that will not worsen the RLs.

You do need to be under the care of a specialist as you have several diseases and the meds need to be considered together.

I am so pleased you will consider adding your story to my evidence gathering. If it would cause issues with your surgery, you do not need to name the doctor.

[TeddiJ in reply to Joolsg]

Thank you, Joolsg! I couldn't remember where you said to order kratom as tea. I kept saying Scotland, but no, it is the Netherlands.

Thanks for the link! There are so many people in the UK who could use this to stop much of their suffering and get some sleep...until they figure out a long-term solution. Thanks for ALL the other info you provided here, too.

[Joolsg in reply to TeddiJ]

I used kratom when withdrawing from Ropinirole but didn't use a good company and ended up with a tummy bug! I used it again for a short time before starting Buprenorphine.

The dutch company is very good and very dicreet.

Hopefully one day, we'll succeed in getting proper, effective treatment for everyone with RLS

[TeddiJ in reply to Joolsg]

Interesting! Good to know-thanks!

[Hidden]

Hi Tuckerdog, is it definitely the pramipexole giving you the problematic side effects? Could it also be the Lyrica given you're taking both together?

[pennygates]

Im very sorry to hear that you arent able to cope with side effects. What i wonder is why you are on two medications?Usually it's only one for RLS. I was on Pramipexole for 12 years and had to come off because they didnt work. But i have now gone back onto them with a small dose of opioids. I reduce the dose of Pramipexole for two days a week and suffer RLS, but then it works again.

You maybe one of those people for whom Gabapentin or Pregablin would give a better result, as Pramipexole isnt the best as it eventually stops working or causes augmentation. Gabapentin didnt work at all for me, but it's worth a try. The side effects were too drastic as well. You have only been on the medication for six weeks, so it shouldn't be as difficult to come off Pramipexole gradually. Its unlikely they would prescribe opioids unless it is refractory RLS as mine is after so many years. But you could ask if nothing else will help, if you have a sympathetic GP. It only requires a small dose of opioids, so really not so worrying. Most people with an opioid problem are taking much higher doses. I hope you find an answer, and good luck.