Short term pramipexole?

[amrob123]

Any thoughts on taking pramipexole short term i .e. 4 to 6 weeks?

There's no risk of me staying on it for any longer than 6 weeks.

I have taken it previously.

[SueJohnson]

You know better than that. Why would you want to do it?

[amrob123 in reply to SueJohnson]

Well clearly I don't! I have taken pramipexole twice previously (once for 18 or so months, the other time around 3 months) and and never had issues with withdrawals etc. although experienced augmentation both times. I'm experiencing increased blurred vision on pregabalin and so am now looking for an interim treatment as I'm revisiting an effective therapy mid January. I don't tolerate opioids and have tried pretty much everything else.

[SueJohnson in reply to amrob123]

Have you tried gabapentin?

[SueJohnson in reply to amrob123]

what is the effective therapy you will be revisiting mid January?

[amrob123 in reply to SueJohnson]

Fecal microbiota transplant.

[Joolsg]

In the past I may have thought it couldn't do any harm for a short time. BUT now there are more and more studies showing that these drugs can cause permanent, irreversible damage. So I would never touch them again. Even for short time periods.Permanent damage can mean iron infusions, gabapentinoids and dipyradimole WILL not work for those that have previously taken dopamine agonists.So, I now follow AASM. These drugs should only be used for end of life scenarios.

As more studies & research emerge over the next 10 years, I suspect the evidence will be very damning.

But, it's a personal choice.

[amrob123 in reply to Joolsg]

Thanks Jools. I wasn't sure whether the damage to receptors only occurred with longer term use. If it's as you say, then it sounds like it's definitely to be avoided, even in the short term.

[Joolsg in reply to amrob123]

I had poor results on pregabalin/gabapentin/Oxycontin.Buprenorphine has been miraculous. When I started Buprenorphine the nausea was intolerable. BUT, it stopped ALL my RLS symptoms. SO I was determined to make it work. I tried everything. Medical cannabis was brilliant. It stopped the nausea completely. When I stopped cannabis, my body had adjusted & nausea was gone.

Then a few weeks later I developed severe panic/anxiety attacks but I was expecting them. I had them on Oxycontin. I just added 50mg pregabalin for a month. It stopped the attacks.

I now just take Buprenorphine.

I do hope you can find a med that works.

One day, they may be able to counteract the up regulation of D1 receptors that causes augmentation.

Billions of research funding is needed.

[4Curiousosity in reply to Joolsg]

I too have landed with success on Buprenorphine. May I ask how you deal with the constipation? Of course I’m already drinking a lot of water and eat plenty of fiber, and exercise every day.

Thanks.

[Joolsg in reply to 4Curiousosity]

Luckily I don't get constipation. But I take Symprove probiotic every morning, drink lots of fluid & eat at least one large portion of cauliflower/broccoli every night.Magnesium citrate at night as well. That can help stop constipation.

[restlessstoz in reply to 4Curiousosity]

Hi , here's a copy and pasted reply regarding constipation on buprenorphine which I responded to someone a couple of weeks ago..

Hi, I also am on buprenorphine (patches) and suffer from constipation if I'm not vigilant. I agree with Joolsg about magnesium which will help. I also take MOVICOL which helps beautifully and very gently as well. It's a powder that is taken mixed with water. It' s not something that is drastic and you can take one, two or more powder sachets until you start working well again, then regulate as needed. I've just looked up and in the UK you need Macrogol Brand names: Movicol, Laxido, CosmoCol, Molaxole. In Australia, it can be prescribed which makes it a cheaper option too. My father, 95, is also on it for his slow bowels due to age and finds it better and more gentle than the syrups he was taking.

Of course, it's also advisable to have high fibre in your diet and not heaps of processed foods but that is a different issue. Figs and prunes have traditionally helped and health food shops will sell a mix of fruits that can be really delicious and have a laxative effect. Oh, and drink plenty of water. That helps the process too.

Psyllium husk is another good one but I find I don't get into as good a routine (in terms of taking it regularly, not the 'regular' effect); with it as with the powders. It's not as convenient for me to take.

For me, Christmas cake, pudding and rich fruity mincemeat are very helpful but come with a lot of calories and high blood sugars so I have to avoid them except as a special treat.

I didn't mean to write a thesis on it but Good luck.

[erinjee]

I had to go back on when I was getting ready for knee replacement surgery (twice). They request you be clear of buprenorphine so regular pain meds work. The first surgery prior to knees I didn't get off of it early enough. They said two weeks, I needed a month. The next two surgeries went back to pramipexole for 4 weeks prior to surgery and then off. I hated it but it worked and honestly nobody offered me any other option. I agree with what you are hearing here but also know sometimes you don't have any other options. It feels like putting poison in our bodies.

[amrob123 in reply to erinjee]

Thanks for sharing your experience Erinjee.

[Joolsg in reply to erinjee]

pmc.ncbi.nlm.nih.gov/articl....

Interesting that you were advised to stop Buprenorphine before surgery.

At the low doses we use Buprenorphine for RLS, it shouldn't be necessary to stop taking it. The above study states that it isn't necessary.

I had surgery in September in the UK and I didn't stop Buprenorphine. They simply gave me additional pain relief after the operation.

[erinjee in reply to Joolsg]

It was terrible for me. The arthroscopic I had a few months before the replacements, I was off the buprenorphine for two weeks. They had to do a complete nerve block to get the pain managed so I could go home. None of the pain meds were registering for me at all. I'm pretty convinced my entire system is just wacky -maybe it's the whole receptor issue that Dr. B talks about but it was definitely a thing for me. 4 weeks out before the TKR and I was fine with regular pain meds both times.

[4Curiousosity in reply to erinjee]

I will be in the same situation when I get my 2nd knee replacement

[restlessstoz in reply to erinjee]

I too had a hip replacement in January and am on buprenorphine. I didn't have to go off it and the post op pain medications worked, albeit maybe a bit higher dose. I don't know why they are asking you to go off it!

When you 'didn't go off it early enough'. what happened? This is interesting as so many doctors have different views.

[erinjee in reply to restlessstoz]

It really is. I don't understand why it's so different either. For me it ended up being a total nerve block on my leg after the surgery and after they had tried numerous pain meds while I was still hooked up to the IV. After I was home and probably day 2, I was fine on the pain meds they sent. It was the first of 3 surgeries but probably good that it happened that way so I knew for the bigger surgeries. The first was an arthroscopic in February then TKR left in July and right in September.

[Kakally]

I agree with Joolsg and Sue Johnson…. Please let us know how you get on with the Fecal microbiota transplant. I really hope it works well . 🤞

[amrob123 in reply to Kakally]

Thanks very much Kakally, and will do.

[Munroist]

I have some ropinirole which I occasionally take when I'm in a situation where it's not easy to wander about at night e.g. hotels which always seem to have creaky floors. I've also used it once to have a restful night when my back was quite bad and I wanted to limit movement. I rarely take it for more than a couple of days but have been up to 5 days without any apparent problems.

I'd say I probably have a maximum of 10 nights a year when I use it. I normally don't take anything for RLS so it's pretty effective and I haven't noticed any change in long term sleeping patterns as a result after I've stopped. However it's not something I do lightly as it I know it can permanently affect your dopamine receptors. I haven't noticed any side effects at all from the very limited exposure I've had.

I'd say the risk is worthwhile if there's a big problem with disturbed nights, e.g. I'd probably take it if I broke a leg and couldn't walk around at night or struggled with movement in bed.

[amrob123 in reply to Munroist]

Thanks Munroist.

[sigurdur]

I was off pramipexole for about 8 months when I gave into temptation and took some for only 2 weeks. When I stopped I experienced the same withdrawals as when I stopped initially. The brain remembers. Pure poison.

[amrob123 in reply to sigurdur]

Thanks Sigurdur.