just when I thought I was getting somewhere…

[RestlessMe]

So I am cutting down on pramipexole (augmentation) and I’ve cut out 3/2 tablets per week and about to cut out the fourth half.

It’s tough but I feel I’ve got it in control. Then I went for a mammogram, then an ultrasound and it looks as if I have recurrent local cancer in my left breast. Looking likely I will need more surgery.

If anyone’s got a minute to answer, what do I do now about these bloody restless legs and the stupid pramipexole?

Do I carry on my reduction program? Do I pause it?

Or do I just fast forward it and throw the pramipexole in the bin and see what happens?

What a pain. Just got if the antidepressants too 🤦‍♀️

Thank you again for listening. I just need to say it out loud.

[SueJohnson]

I am so sorry. Wishing you the best on your surgery. Do not stop taking the pramipexole. Assuming you are having the surgery soon, I would stop your reduction. You don't need to be suffering from that right now. If you are suffering on the dose you are on, I would go back up one step. What antidepressant are you taking? Most can make RLS worse.

[RestlessMe in reply to SueJohnson]

I was taking sertraline but completely off it now

[SueJohnson in reply to RestlessMe]

Good because it can make RLS symptoms worse. If you ever decide to take an antidepressant again, I would suggest trazodone.

[RestlessMe in reply to SueJohnson]

Thank you Sue.

[LotteM]

So sorry to read this when you are doing so well on the pramipexole reduction. I suggest what Sue suggested. Don't reduce further for now, maybe even increase one step if needed. And only continue when you are up to it. You will need your strength to deal with the cancer treatment. I hope you and your doctor get control soon.

[Joolsg]

I'm so sorry to hear this. I agree with the others. Pause the reduction of meds until after surgery. Take all your meds to hospital and don't let them take them off you. If you don't take them as usual you will get withdrawal in hospital. Take a printed sheet with you and discuss with the anaesthesia team.in advance. The anti nausea they give will trigger RLS and your legs will be kicking while under anaesthesia. They need to give RLS safe anti nausea, anti emetics like Zofran.Sadly, they won't know this unless you tell them.

I wish you all the best.

[RestlessMe in reply to Joolsg]

Thank you so much

[RestlessMe in reply to RestlessMe]

It really scary how much you have to know for yourself, stuff you’d expect the medical team to know. I really do appreciate all this help

[Joolsg in reply to RestlessMe]

It's appalling that we have to research all this ourselves.If the RCGPs and the ABN included RLS in their curricula, we wouldn't have to worry.

I am proposing another direct action campaign again this September for international RLS day.

The RCGP dismissed my last campaign saying GPs would know what to do and how to research.

That is clearly untrue.

We have so many examples on hete where GPs refuse to do blood tests or prescribe gabapentin or increase dopamine agonists when augmentation has clearly occurred.

One GP recently told a patient there were no NICE guidelines on RLS! Even though they're already out of date, there are NICE guidelines.

It is unacceptable and we all need to get involved and our friends and families until they listen, realise how serious this disease is, and teach RLS to all medical students and GPs during training.

Rant over. For now.

[RestlessMe in reply to Joolsg]

Happy to help and get my family to do the same

[Joolsg in reply to RestlessMe]

😊Thanks

[SueJohnson]

Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine. Also talk with the patient representative ahead of time. It is a good idea to bring your own medicine, but don't tell them you have it since they will insist on giving you medicine prescribed by the hospital. That way if they don't follow through you can take the medicine you brought. If it would be difficult to get to it, have a friend bring some. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran as Joolsg said for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $45, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants.

[Whymelord]

Hi Restlessme,I'm really sorry to hear your news,may I say you sound soo brave.I suggest you do what makes life easier now you have enough to deal with.I wish you all the luck in the world.