A brief respite and now back with a vengeance

[RestlessMe]

I suffer from restless legs syndrome and was prescribed pramipexole. I started a reduction program several months ago and by September I was down to half a tablet today. I was diagnosed with breast cancer and had to have a mastectomy 3 moths ago. Unbeknown to me the surgery temporarily raised my ferritin levels and so I have had an amazing break from RLS.

Over the past few days the symptoms have come back with a vengeance. I restarted the reduction of pramipexole about a month ago, and I also take gentle iron, two tablets every other day. I now take a codeine tablet every night. I really do not want to increase the pramipexole as I know I need to come right off it.

I am now at a loss what to do. Back in the summer I emailed Professor Walker to ask for an appointment, but despite chasing his Secretary I have heard nothing back. Is there anyone else who I can see, that anyone on here can recommend?

So feeling very sorry for myself! Any advice would be really really welcome. Thank you all for listening.

[RestlessMe]

just a thought to add. I’m also taking calcium tablets to ward off the effects of the hormone therapy tablets I have to take.

[marigold60]

Hi, I found gabapentin has helped me enormously. I took it whilst coming off pramipexole and though it took a while to become really effective I can manage now with a low dose and occasional top up. I think your GP can prescribe this. Just wondering though if the calcium tablets might be making it worse. Others would know this more than me though

[Cocosmum]

I'm not sure why so many people dislike taking pramipexole. I take 2 x 24mg of iron around 4pm on empty stomach, at 7 pm I take 2 x 0.088 mg pramipexole and at 9pm 2 cocodamol. I now very very occasionally have rls.

[Joolsg in reply to Cocosmum]

Pramipexole is brilliant at first. Until it turns on you. Over 80% will experience a worsening of RLS on Pramipexole. It becomes more intense, starts earlier and moves to arms, hands, back and face. It's called Augmentation. When it hits, the ONLY solution is to get off Pramipexole very slowly. Withdrawal is brutal. That's why people are anti Pramipexole and why top experts will not prescribe these drugs any more.The Mayo algorithm is now the best advice for RLS and dopamine agonists ( Pramipexole, Ropinirole and Rotigitone) are now last to be prescribed where all other meds and iron infusions have failed.

[Cocosmum in reply to Joolsg]

When you say pramipexole is brilliant "at first" can you elaborate please? I've been taking it for about 9 years

[Joolsg in reply to Cocosmum]

The rate is 8% a year cumulatively so you're now reaching the point where most people have experienced worsening RLS.If your symptoms are no longer covered 24/7, if you start to feel RLS in the car or the cinema or on planes, it means the drug is worsening the disease.

Some experience it within weeks or months, others after several years. There is a small minority that manage to avoid it even after 8 or 9 years.

So if you get complete cover and your RLS doesn't start earlier in tha day, you may be one of the minority.

[Cocosmum in reply to Joolsg]

Would you consider my dose to be high?

[Joolsg in reply to Cocosmum]

No you are on 2 x0.088 which is the equivalent of 0.25mg. If it ever stops working, do not increase, that would be when you switch. You have probably avoided augmentation so far by keeping your ferritin high and supplementing with co codamol.

[Cocosmum in reply to Joolsg]

Thanks very much for your advice

[SueJohnson in reply to Joolsg]

Up to 70%

[Daisy2408]

I was given dihydrocodeine for pain relief some years ago because I cannot take anti inflammatory meds. I took very few but by chance found they helped RLS. I now take 2 at night plus magnesium. Usually I take a further one when RLS kicks off in the night. It seems to do the trick.

[RestLessLeg]

Others may have something more informative to say regarding your situation in the short term (including advising you on continuing to wean off the DA) but it would seem that raising your ferritin levels in the long term should be at the top of your to do list… considering it helped to alleviate your symptoms as you mentioned.

[SueJohnson]

I second RestlessMe. Since you had such good results with your ferritin being raised, I would ask for an iron infusion which can raise it more quickly. Otherwise I would take your iron tablets every day at the same time but 24 hours apart as taking them closer results in less iron absorption. You may know this but in case you don't: take your iron tables with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you take magnesium and since you take calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with the absorption. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after after 3 months since you are taking iron tablets or 8 weeks if you later have an iron infusion.

[RestlessMe in reply to SueJohnson]

Thanks Sue. I haven’t been doing the orange juice so I will go and buy some. Amazingly I have a new and incredibly good doctor. I am seeing him again in January, and he appears very sympathetic so you never know.

[SueJohnson in reply to RestlessMe]

That's great !

[SueJohnson]

When you find a new doctor, don't forget to ask for a prescription for gabapentin or pregabalin so you can start it 3 weeks before you are off the pramipexole.

[Joolsg]

It appears you are someone who would respond well to an iron infusion. Several UK hospitals will now do them for RLS but I know St George's in Tooting will only take patients from the local area.Ask your GP if she'll refer you to the nearest teaching hospital. Attach these links which confirm effectiveness of raising ferritin levels.

In the meantime keep taking the ferrous bisglycinate and keep reducing the Pramipexole. It's something we all have to get through without much help as our doctors don't realise that it's more difficult than heroin withdrawal for the majority.

Ask your GP for gabapentin or pregabalin and start taking 3 to 4 weeks before the last dose of Pramipexole. The codeine will help the withdrawals but tramadol or oxycodone would be better.

Medical cannabis is also very good for the withdrawal symptoms.

Prof. Walker is overwhelmed and very behind, so rather than waiting, start the process now and your GP can prescribe pregabalin or gabapentin and short term oxycodone.

Also have a look at RLS-UK website where Dr Kate Condon talks about iron infusions. Your GP could take a look at it.

sciencedirect.com/science/a...

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

[RestlessMe in reply to Joolsg]

Thank you Julie . I did assume that Professor Walker was in high demand. His secretary has left and I now have the details of his new one. Yes, I agree that what you say about the doctor and I have an appointment in January. Thank you for the links. I’ll have a look and also send them on to my doctor.

[Opie__]

Sorry to hear about breast cancer diagnosis, I was having problems with Requip augmenting when I received my cancer diagnosis (uterine) in March 2022. As anyone, it threw me for a loop and I struggled whether to continue to reduce meds while going thru Chemo. I only took 1 1/2 mg a day then, so I decided to wait til Chemo was over to really work hard on getting off Requip. I started with stopping the 1/2 Requip I took during the day for a few months before I reduced it at night. I also started Gabapentin about the same time, I also developed neuropathy from Chemo, so that was really for neuropathy not RL (plus it was only 300mg a day). I started slowly reducing (like recommended on this site). It actually went pretty well til I got down to 0 Requip at night. The next two weeks were tough, lots of exercising and cleaning during the night but so worth it. I know nothing about Pramipexole but if like Requip, it is a dangerous road to go down. My GP didn't understand RLS, so I was on my own. I didn't take any opiods or medicinal help. thru the reduction. I did go to see a neurologist out of Vanderbilt to get answers. He was great and increased Gabapentin to 900 mg perday. Until I was completely off Requip, I didn't notice a lot of improvement. My ferritin level was 11 at the time, I am taking oral iron for the next few months, to see if it improves. My GP has been fantastic about working with new physician. I am now having little RL even at night. I will have ferritin checked every two months til over 100/200. Sorry my post is so long, hoping you do well with cancer diagnosis and reduction of RL problems.

[Zedz in reply to Opie__]

if ferritin doesn’t improve push for iv iron infusions. Only thing that got me over 15. Also try b12. I was deficient in b12 and folic acid and the combo of the 3 has helped immensely

[Opie__ in reply to Zedz]

Thanks, yes my neurologist plans to do infusions if the oral iron doesn't help in a few months. I recently started taking L-methylfolate/pyridoxal 5-phosphate/methylcobalamin for my Chemo induced neuropathy, it seems to be helping but I am only 5 months out of Chemo. It would be great if that is one of the reasons my RL has settled down.

[Hidden in reply to Opie__]

Hi Opie, why would you do an infusion if your current regimen is working? Don’t let people talk you into something you don’t need. I believe “bodily” Ferritin has little to nothing to do with RLS. The RLS brain has trouble storing iron for a rainy day so we with RLS rely very heavily on “serum” iron which is kind of just this free floating iron in our blood. That iron plummets (in everyone) at night and we get RLS. The non-RLS world has plenty of stored brain iron. Iron is like the grease and glue that keeps everyone’s dopamine transport system chugging along. By taking a highly bioavailable form of iron before bed, on an empty stomach, I get complete relief from RLS for one night. Ferrous sulfate is NOT bioavailable. Ferrous bisglycinate is. Our brains don’t have any problem calling up iron from the bloodstream. If it did we would have RLS 24/7/365 rather than mainly at night. And if your low ferritin was the cause then you would have RLS 24/7 as well. The exception to this seems to be if you are able to get your Ferritin closer to 600 and keep it there. Then it seems there is a spill-over effect into the brain. See posts from a person on here by the name of Kakally. Her opiates start losing effectiveness when her ferritin drops much below 600 and she knows it’s time for another infusuion

[RestlessMe in reply to Opie__]

Thank you very much for your reply. I wish you a speedy recovery too. It’s a tough times but forums like this really help. It’s so good to talk to people understand

[Zedz]

get on something else. I’m on gabapentin and did so while weaning. It is worth it. Don’t give up. I don’t know if you have a neurologist but that is who finally helped me and knew what he was doing

[Audrina1209 in reply to Zedz]

What dose gabapentin were you on while weaning off prami..?..

[Zedz in reply to Audrina1209]

to be honest I can’t really remember it’s been a couple years. I believe he had me at 600 twice a day. I currently take 600 at night sometimes only 300. My max was 900 at night

[RestlessMe]

Thank you so much for all your kind comments and advice. It really helps. X

[Sassy-here]

no one should use Pramiprexole. It effected not just my body but my mind. Took me years to get sane again. I had horrific dreams, hallucinations then was a zombie and sat in a chair for 2 years. Could not do anything. Just stared.

[Sassy-here]

I know what you’re going through. Only the cbd . There isn’t someone to get it for me. Sometimes Aleve. It’s bad to lay in bed have your feet ache clear aches up your legs. . Motrim in different forms helps.. I use plant vital gentle sleep. Massage with cbd over counter cream . Hormone therapy I know nothing! 🙂 I’ll be 82 in Jan. Don’t use Pramiprexole it will ruin you.