Targin has lost effectiveness - what ... - Restless Legs Syn...

Restless Legs Syndrome

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Targin has lost effectiveness - what can I do now

Goldy700 profile image
22 Replies

hello community. I have been diagnosed with stage 4 cancer but still optimistic I may live for a few more years.i was prescribed Targin 10 mg a day and 15 mg at night 3 months ago - for pain and of course having cancer I can get any amount of opioids and at first it worked wonders for my RLS . However it now no longer works for RLS. I could increase my dose a lot but I don’t like the side effects - constipation, etc.

Are there any drugs compatible with Targin I could take that do not lose effectiveness in 3 months? I do appreciate this community.

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Goldy700
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22 Replies
Joolsg profile image
Joolsg

Oh Goldy. I am so sorry to hear this. Sending positive thoughts your way.I can only suggest Buprenorphine. Oxycontin never worked that well for my RLS, but Buprenorphine covered all symptoms. After 3.5 years, it's still working brilliantly.

The inflammation from chemo will possibly be worsening the RLS. And also low iron may be fuelling symptoms.

Have they given anti nausea drugs for the chemo? They might be triggering worsening. Safe anti nausea drugs are Kyrtril and Zofran or medical cannabis.

Goldy700 profile image
Goldy700 in reply toJoolsg

Hello Joolsg - I didn’t do chemo as cancer had spread and would only give me a few months extra but my quality of life would be very bad. I am not getting nausea with the Targin. So that is good. I have however shrunk the cancer with the keto diet and I think I may be able to prolong my life possibly. This is why I want to wean off opioids and find a less addictive solution. I will ask my doctor for buprenorphine. Thank you so much and any more advice would be appreciated.

Joolsg profile image
Joolsg in reply toGoldy700

As you're in Australia- I suggest you send a message to Shumbah. She lives in Brisbane and is prescribed Buprenorphine sub lingual pills.In Sydney- Dr Brendon Yee is a sleep specialist and will know how effective Buprenorphine is for RLS.

I took 10mg Oxycontin at 10am and 10pm and an extra 5mg at 1am. I had severe RLS. I made a straight overnight switch to 0.4mg Buprenorphine. I take 0.2mg at 9pm and 0.2mg at midnight and it covers my RLS 24/7.

amrob123 profile image
amrob123 in reply toJoolsg

There are quite a few specialists and GPs in Australia who will prescribe opiods. Goldy, I may be wrong but I seem to recall that you're in WA. If so, let me know if you need me to point you in the direction of some specialists who prescribe buprenorphine.

Goldy700 profile image
Goldy700 in reply toamrob123

I am lucky Marin - because I have terminal cancer there aren’t restrictions in prescribing buprenorphine - I will be able to get a script but being Christmas it might not be quick. Yes I am really starting to feel the downside of Targin and how quickly the body becomes addicted.i am not going the road of if I am going to die soon which the doctors have adopted. I am feeling good on the keto diet, also taking CBD oil,, methylene blue, Fenbendazole . These have a lot of interesting science on their effect in reducing cancer. Anyways they are very low toxicity. Already I am going past the 4 months my doctor gave me and I am positive.

Iloverls profile image
Iloverls in reply toJoolsg

I saw Brendon Yee las week He told me he wouldn’t prescribe opioids as he isn’t an expert. He is not opposed to them

.he said if I needed them he would refer me to a pain specialist dr Stephen Gibson and or dr James Di Michiel both of whom are in southern Sydney at Miranda.

Not very useful for me as I live a 10 hour drive away but might help Goldy700.

SueJohnson profile image
SueJohnson in reply toGoldy700

In your situation I sure wouldn't worry about addiction. It's great the keto diet is helping you. Here's wishing you many more comfort free years.

Goldy700 profile image
Goldy700 in reply toSueJohnson

Yes Sue wouldn’t worry except I believe there is hope I can beat this or at least live quality of life for quite a while. Already the Targin has stopped working on my RLS so I am hoping Buprenorphine will be better drug for me.

SueJohnson profile image
SueJohnson in reply toGoldy700

I certainly hope so too.

amrob123 profile image
amrob123

I'm sorry to hear of your diagnosis Goldy.Buprenorphine and methadone seem to be the opiods of choice for RLS. I'm wondering if you could swap the Targin for methadone or buprenorphine?

How are you taking the Targin currently ? I know some people get breakthrough symptoms when taking once per day.

Hopefully others will be able to advise further.

Goldy700 profile image
Goldy700 in reply toamrob123

I am taking 10mg in the day and 15 mg at night. I know I can increase but the tolerance quickly catches up. I can feel my body wants more and more and the side effects are bad. I would love to find a drug that has pain relief that helps RLS but not as augmenting. I have done remarkably well in that my cancer has reduced on the metabolic diet as recommended by Dr Seyfried . Essentially you starve the cancer by cutting out sugar and carbs. That is why I have some hope and do not want to just increase the dose continuously as if I only have a short time to live. I may die soon but there is a chance I could live for many more years. Thank you for your help.

LotteM profile image
LotteM

Just to let you know I am sorry to learn about your diagnosis. I hope your live will continue to be liveable for as long as possible.

The others have given you good replies.

Zenawarrior73 profile image
Zenawarrior73

Goldy I’m so sorry to hear of your diagnosis. The experienced members in here have left some good advice re alternatives and are far more knowledgable than I.

I hope you find a medication that helps your quality of life.

With the opioids I take a high does of magnesium citrate daily which helps the constipation but also cosmocol sachets if I’m really bad but only use the sachets infrequently.

Take care

Jumpey profile image
Jumpey in reply toZenawarrior73

Hi how much magnesium do you take ?

Zenawarrior73 profile image
Zenawarrior73 in reply toJumpey

2x 300mg tablets in morning and 1x300 mg at 1pm

I take most of my supplements in a morning and have been trialling various combinations lately along with trying to see if my diet has an impact which I’m now 100% sure it does

I have fasiculations PLMD and RLS so sometimes when I have all 3 going off its not fun other days I’m better

I’m on a low dose buprenorohine patch which the gp has just agreed to increase

Jumpey profile image
Jumpey in reply toZenawarrior73

Cheers.

Goldy700 profile image
Goldy700 in reply toZenawarrior73

Thank you Zenawarrior I think I will increase my magnesium. I hope the buprenorphine works well for yiu

Goldy700 profile image
Goldy700 in reply toJumpey

Jumpey - I am taking magnesium glycinate in high dose

Jumpey profile image
Jumpey in reply toGoldy700

How much do you take?

Zenawarrior73 profile image
Zenawarrior73 in reply toGoldy700

Hi Goldy I take magnesium citrate to help with the constipation then magnesium malate in the evening but 3 hours before my iron tablets

Jumpey profile image
Jumpey

I just wanted to reach out and send you love.I dearly hope you find a drug that helps settle your RLS so that you can live the rest of your life in peace. Are you taking any other drugs which may be triggering it?

Goldy700 profile image
Goldy700 in reply toJumpey

No Jumpey I am only on Opioids

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