Stopping medication

[Ozzy2021]

Hi, I have suffered with restless legs all my life but they only became unbearable after having my second son. I tried all sorts of different things with varying success, initially Magnesium helped, then Iron, then an iron infusion but then they gradually became less and less effective. I was exhausted, so my Dr put me on Sifrol 0.25mg, so a low dose and to start and I was so relieved as it worked so well! Im 42 so Dr did say I was young to start them but we needed to do something. And to be honest I wasn't thinking about the issues that can happen. After only about 6 months my restless legs were the worst they had ever been , the sifrol wasn't working and it had infact made things much worse. I know you shouldn't just stop cold Turkey so we reduced the dose to start with, it was hell. I was distraught.

I told the dr I was never taking them again and after that week I managed to only take them once more on one really awful night. The withdrawal was terrible, one night I tried Ibuprofen, paracetamol, magnesium etc etc but nothing helped at all. The next day I decided to try cbd oil and for the first night in so long I slept all night! I did feel rough the next morning but atleast I had slept. I used the cbd for the first 2 weeks, it was just for that initial withdrawal. It worked. I was beyond relieved.

I just wanted to share some other things that I have found to help since then. Keeping hydrated, lots of water and before bed I have a small hydralyte bottle to boost my electrolytes. Vitamin B12, Magnesium, Vitamin E and now before bed I use the shower on as hot as I can handle and as strong as I can and shower just my knees (thats the only area I get it). Then I rub on liquid magnesium.

I also have really reduced my caffeine intake and I don't drink so that was never an issue. For the first time in I don't know how long my legs feel better!

I just thought this may help someone or just show you that it is possible to get off these tablets if that's what you want.

[Hidden]

Sorry to hear the problems you had. RLS does sometimes occur during pregnancy and for some persists afterwards. This is moreso if you hd primary RLS - inherited.

Thanks for sharing the things you have done to get off the sifrol. Perhaps you can give more detail of the particular CBD product you use. There are many "CBD" products, but it seems the ones that are most effective aren't legal everywhere.

Iron infusions apparently have a 60% success rate. However they have to be repeated every 6 months. They're not a cure.

If you do get into the situation where you can't manage without medication, note that internationally dopamine agonists such as pramipexole (sifrol) are no longer recommended for RLS because of augmentation which is what you suffered.

From the many posts I read of people suffering the consequences of sifrol, it seems the doctors prescribing it seem to be ignorsnt of this.

The recommended first line treatment for RLS is an alpha 2 delta ligand, either pregabalin or gabapentin.

[Wolph215]

The only thing other than prescription meds that helped my rls is kratom which is a natural plant , I heard of it on my Lyme support group. It helps my chronic pain but completely wipes away my rls. Which I’ve had for the last 27 years. It started during 3rd trimester of pregnancy... I had restless body syndrome! I thought I was gonna go crazy, since then different things brought it on but kratom has been the only thing that ever worked.

[Doings in reply to Wolph215]

Your rls sounds just awful and I can sympathise as I’ve had it for so long I can’t remember when it began, for over 20 years I’ve been on Pramipexole which no longer works efficiently. My doctor has no knowledge of rls so I’m hoping for good advice on other treatments. You mention Kratom which I’ve never heard of, where can I find it as hoping for some relief.

[Joolsg in reply to Doings]

If you’ve been on pramipexole for 20 years it is inevitable that you will be suffering augmentation and the only solution is to get off the pramipexole.

Kratom is illegal in the UK but I know you can get it from the Netherlands ( they post it discreetly).

Reduce the pramipexole by 0.0625 mg every 2 weeks ( by cutting tablets) and in your case take a minimum of 3 months, preferably a year to reduce the pramipexole.

Raise your serum ferritin above 100, preferably 250 as it will reduce withdrawal symptoms.

Discuss replacement meds like Gabapentin or pregabalin or low dose opioids with your GP. You may need opioids to help with withdrawal symptoms.