My consultant changed me from Ropinirole to Rotigotine patches, the theory being that as my pain and my symptoms are 24/7 slow release would be better for me.However I've been ten times worse since the change, and have a painful swollen ankle.
I have spoken to doctors this morning, and he has arranged another consultation with Papworth.
Has any one else had this issue with these patches?
Did the Ropinirole work at all in the beginning? What dose were you on and for how long?Did the doctors do full panel fasting blood tests? What other medications are you taking?
The reason I ask all these questions is so we can guide you.
Ropinirole/Rotigitone/Pramipexole are no longer prescribed by experts for RLS because they all cause an increase in severity ( augmentation).
That may be happening to you.
Have a look at the Mayo Clinic Algorithm and the description of augmentation.
Also. Swelling on rotigitone should be reported asap to your doctors as it is a side effect.
Do NOT let them persuade you to stop these medications quickly! You must reduce very, very slowly to reduce the awful withdrawal symptoms they cause.
mayoclinic.org/drugs-supple... mayoclinicproceedings.org/a...
rls-uk.org/augmentation-reb...
Hi Joolsg,Ropinirole stopped the "I have got to move my legs or I'll will chop the damm things off", but not the pain and the trembling etc I have.
I was on 2mg at 1800 and 2200.
Had various blood tests over the years but don't think any was fasting.
Also on pregablin 2a day 100mg, co codamol 8 times a day, 100mg sertaline.
The swelling, I did report to doctors and they said monitor and see!
Is the pain and trembling linked to RLS? Usually, if it is, Ropinirole would stop both the urge to move and any pain related to RLS. You may have fibromyalgia or neuropathy as well.
If Ropinirole didn't stop the pain, switching to rotigitone won't stop the pain either. I suspect pregabalin will be better for that. You were on the max dose of ropinirole and are more at risk of augmentation. Experts no longer prescribe dopamine agonists and would like the max. dose for patients on these drugs to be far lower- 1mg for Ropinirole.
Sertraline is an anti depressant and all anti depressants worsen RLS. If you suffer from depression please discuss fully with your doctors. Many people with RLS find it disappears when they stop the anti depressants. There are two safe options- Buproprion and trazodone but you will need to see what your doctors say as your depression has to be controlled. If you have anxiety, there are safer options.
Please read the Mayo algorithm and the notes on augmenattion and watch our for any signs.
You might do better on low dose opioids as they would control both the RLS and your pain.
I hope the swelling settles.
We are still waiting to find out for certain about the pain and the trembling, I'm on a long waiting list for an MRI.Thanks for the info, much appreciated
What Joolsg was referring to is checking your ferritin. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
How long have you been on ropinirole? Did you have symptoms 24/7 before you started the ropinirole? If not that is one of the signs of augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Do you find these apply to you?
I was on it for about two years, max dosage very early.Always had the extra pains, nothing seems to help overly with that
The "twitching" and jumping legs is much worse on the patch as opposed to Ropinirole.
If for any reason I don't have medication of any sort (chemist ran out before) then that's when I have the "vanilla" restless legs, can't keep still at all, and nothing helps.
That's because you go straight into severe withdrawal as soon as you stop these drugs. I forgot to ask what dose of the patch are you taking?
It has to be equivalent to the 4mg of Ropinirole you were on OR you'll experience withdrawal symptoms, like when you couldn't get the meds. You should have been given a 4mg Rotigitone patch. Anything lower than 4mg would cause severe withdrawal symptoms - usually a severe worsening of RLS, including leg jerking.
3mg?
That would explain why your RLS and leg pain has been much worse.You've dropped 1mg overnight.
You could stick with it for a week & hope your symptoms settle ( it's always best to be on the lowest possible dose of these drugs) or, if it's unbearable, ask for the 4mg patch as it is equivalent to the 4mg pills you were taking.
Also do consider asking your doctor about the switch from the anti depressant. Most GPs and neurologists are unaware that SSRI, SNRI & tricyclical anti depressants worsen RLS for the overwhelming majority of RLS patients.
Give your GP a copy of the Mayo algorithm as it will help him/her treat you more effectively.
Codeine will help until the 'withdrawal' symptoms settle. You can buy solpadeine Max from the chemists or ask your GP for 30mg codeine.
I can’t help you with your query, but many here will and I hope they’ll help you with you dilemma. I’ve responded because I too have been under the Papworth and I’m wondering which doctor you have been consulting. Mine was Mike Davies of the Sleep Clinic.
Hiya, yes I am under Me Davies as well
Small world! I’ve found him helpful, but if ever you shift meds to opioids, he’s tough on dosage limits. Good luck with a resolution to your problems.
Thank you, yes definitely a small world
buprenorphine 10mcg patches and nightmares
MIRAPEXIN PROLONGED RELEASE
Rotigotine Patches
Positional release 
EXTENDED RELEASE GABAPENTIN. 
