I have been off sifrol for 6 weeks now and have been able to cope taking targin(10/5) at 9pm each night.I also take 75mg lyrica at 10 pm.I usually can go straight to sleep at 11.30pm, wake about 1.30am go to toilet and straight back to sleep until about 4.30..am when I wake with rls and CANNOT go back to sleep.I then feel desperate as I so need more sleep to cope with looking after my sick husband during the day.A couple of nights at 5am I took a targin(5/2.5) which had a use by date 5/2020 left over from a hip op ….wasn’t sure it was safe , fortunately it worked …had a wonderful sleep until 9am … I didn’t care that I felt groggy all day, just grateful it worked!!Another few nights I took half a panadeine forte(15mg codeine and 250mg paracetamol which worked also.
Is it SAFE to mix opioids like this?
It’s now 1am and my Targin hasn’t worked for the first time…….Can I have the weaker Targin so soon?I HAVE to get sleep as I am needed tomorrow.
Would appreciate any guidance please
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My sleep specialist who prescribed it told it’s slow release so should work for 10-12 hours which it doesn’t.He also said if I wake with rls I must NOT take anything and would just have to pace which isn’t an option for me in my circumstances.
You have seen that it doesn't last that long as have many others on this forum. There is a Netflix documentary saying this but I don't know the name. Madlegs1 and others have advised to take it every 6 hours to avoid mini withdrawals.
Targinact states on the pack that it has to be taken every 12 hours, so your doctor should prescribe it accordingly.However, even if you take 10mg Targinact twice a day, it doesn't work for many people because it does NOT last 12 hours. It then causes mini opioid withdrawals, the main symptom being RLS.
So, ask your doctor to increase the dose to twice a day or better still 5mg taken every 6 hours. 20mg in total a day.
The Mayo algorithm sets out the average dose of Oxycontin at 30 mg a day. Show it to your doctor and explain that 10mg isn't covering your RLS.
If he/she won't listen, contact Shumbah and she may direct you to a good doctor in Australia who is more familiar with RLS and low dose opioids.
I'm so sorry you're struggling so much. It's just so unfair.
Thank you Joolsg and Sue for continuing to help me. It is so reassuring to be able to reach out and receive advice when I need it!Think I will have trouble convincing my specialist to prescribe as u suggest but can only try.
Won’t taking Targin more frequently to prevent mini withdrawals make me feel drowsy all day?I need to be alert as I need to drive my husband to frequent medical appointments and ,as his carer,, I need to be focused .
Targinact is an opioid and can cause drowsiness in some people or wakefulness, alerting in others. The side effects differ for each person. Pregabalin is sedating and is more likely to cause drowsiness.
I think in your case, it will be trial and error. However, at the moment, your lack of sleep from uncontrolled RLS is more likely to cause drowsiness.
An alternative option would be to ask for low dose buprenorphine to take at night, which is very effective for refractory RLS, especially after dopamine agonists have failed or where oxycontin/lyrica aren't suitable. Buprenorphine lasts 24/25 hours, so avoids mini withdrawals. But, as it's also an opioid, you may experience daytime drowsiness- depending on how YOU respond to it.
At present, you aren't sleeping and still have refractory RLS. Ask GP to look at the prescribing guidelines for Targinact. They are very clear. It has to be taken twice a day, to avoid mini opioid withdrawals. You can trial it for a few weeks. If taking it in the day causes sleepiness, you may have to ask for help from your local authority to drive your husband to appointments. Here in the UK we can apply for an "attendance allowance" in cases like yours for help paying someone to drive your husband or paying for taxis.
I stupidly forgot to take my second 0.2mg dose of buprenorphine at midnight so was wakened by RLS at 4.15 am. Hence my response at this time! I won't make that mistake again.
After withdrawal from Sifrol, it can take months for you to find the right combination of meds to cover your RLS. If you can get help from family/government in the meantime, please do so as it will be very difficult to look after your husband otherwise.
Thanks,I will discuss the options u suggest with my specialist at my next appointment later this month.
I had high expectations that after I had stopped sifrol my symptoms would become less severe and revert back to evening/ night only and I would be able to once again nap during the day if necessary.I feel disappointed because I still have augmentation and now am dependant on an opioid that is frowned upon by many.I doubt that lyrica or gabapentin will work on their own.
I wonder if,by some miracle,there are rls sufferers out there living a symptom free life on little or no meds after weaning off dopamine agonists??
I know of one or two patients who were on dopamine agonists and are now med free after iron infusions.Iron infusions are first line treatment now, but the world has to catch up with teaching and knowledge.
How many of us would be med free if we'd been given iron infusions years ago before being prescribed dopamine agonists?
That's another reason to push for blood tests.
I would check with your doctor or pharmacist. As for RLS, Ropinirole is usually effective. Best of luck and hang in there!
Please don't recommend ropinirole. If it's working for you, that is great and I'm glad for you.
However ropinirole is no longer the the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. The problem is Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me one doesn't want because it can be hell to come off it and the longer one is on it, the harder it will be to come off it and the more likely one's dopamine receptors will be damaged so that the now first line treatment for RLS won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
I actually recently saw a neurologist at the Mayo Clinic. Sadly, this sites often invite commentary from those like yourself. I would recommend anyone seeking medical advice to see a doctor which was in my first sentence.
Strangely enough not everyone at the Mayo Clinic are familiar with the Mayo Clinic Updated Algorithm on RLS and unfortunately many doctors aren't either especially in the UK where the majority of the forum members are from.. Except for advice from it which is considered the bible on RLS I do indicate with my advice to check with your doctor.
All I can say is a saw one of their head neurologists as a second opinion. I certainly don't love the side-effects for Ropinirole but it does work and my case is quite severe. Like any drug, people should discuss them with their doctor(s) and try different ones.
well done Sue you are a treasure of help and knowledge this site helps me so much just to read other peoples struggles with this wretched disease and their ways of coping ...i have for two nights now soaked my feet in epsom salt water i cant say its rescued my legs but it has made my hot hot feet feel smoother and a little bit cooler i have periphial neuropathy curtesy of radiation ....thank you so much xxxx
Hi, Targin also worked for me for about 4mths taken twice daily as stated by others. Then it stopped altogether even after we increased my dosage. I have never taken a dopamine drug (as yet)
I am now on Norspan patch which doesn’t always stop my rls and i need to occasionally take a small dose of endone.
Happy to discuss with you as mentioned before, good luck
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