HELP PLEASE

[milly-22]

HELP PLEASE -Following your advice, Sue Johnson I have been reducing my Ropinirole and am now down to 1.5 mg. from the original 4 mg. per day. I was in hospital for 2 1/2 days on May2nd for successful bowel cancer surgery and this did not worsen my RLS. However I returned home yesterday after a further 2 1/2 days in hospital for suspected viral or bacterial meningitis and last night had just one hours sleep. Apart from a 2 hour sit down for a chat with friends this morning I have been on my feet day and night. I had requested my Dr to increase my dosage of opioid which he did and this has gone from 8 tablets of Co-dydramol 10mg dihydrocodeine tartrate with 500 mg of paracetamol to 8 tablets of Co-codamol, 15mg.Codeine Phosphate hernihydrate with 500 mg of paracetamol per day. They appear to be having no effect on me. What would it be best for me to request. I think anything morphine based will be denied to me. I should be resting due to my recent illness and cannot do so and am just exhausted.

[SueJohnson]

I would ask for buprenorphine. You might also want to go back up a dose on your ropinirole. When things settle down you can go back down, but now is not the time you want to suffer - as you mentioned you need to rest. Also you may have been given a stronger opioid in the hospital and are suffering from withdrawal from it.

[Sillyvester19 in reply to SueJohnson]

Hi Millie sorry

to hear about what you have been through lately ,but my advise to use is cut out sugar Drink plenty of water and if you can take magnesium this is one of things that seem to help me. Also if you can sit on a soft seat rather then a hard chair that helps but don’t cut the ropinirole yet , water Tonic. Water, but no sugar at all, good luck Honey wish you well xx

[SueJohnson in reply to Sillyvester19]

You replied to me instead of Millie.

[milly-22 in reply to SueJohnson]

Thanks everyone for your input. However I think most of you have misread my post. I had NO increase of RLS symptoms after my surgery. Just the normal amount of RLS that I had been experiencing and I was sleeping a good few hours. The problem has been after my re-admittance to hospital 7 weeks later, which was totally unrelated to the surgery, as I had a viral infection. It is since then that the RLS has worsened so much.

Anyway that aside I am intending to take Sue's advice and ask my Doctor for buprenorphine. However, when I first spoke to my Doctor at the beginning of the year about coming off ropinirole I did mention buprenorphine to help me and he was unhappy about this. So how many UK based people on this forum have successfully been prescribed buprenophine by their Doctor. I feel if I have some statistics to give him he may be a little more amenable.

Thanks everyone for your help. Following on the first night of just one hours sleep when I posted on here I have had 3 hours for each of the last two nights but cannot rest at all during the day. So still worn out.

[SueJohnson in reply to milly-22]

Viruses can also cause inflammation so I suspect that is the cause.

[milly-22 in reply to SueJohnson]

Oh that's it then. Thanks Sue.

[SueJohnson]

Also surgery causes inflammation and inflammation can make RLS worse.

[4inthemorning]

I’m really sorry to hear how this is going for you post surgery. My doctor at Johns Hopkins impressed upon me when I tapered off for ropinirol that I had to be off it for at least 10 days preferably 14 days before starting a new treatment which in my case was oxycodone. That treatment has been enormously successful as that two week drug holiday made all of my RLS symptoms way less severe. I’m now taking only 15 mg of oxycodone prior to bedtime and sleep throughout the night.

Having said this, I don’t want to minimize just how difficult and borderline traumatic it was getting unhooked from a dopamine agonist And then going for almost 2 weeks with no drug at all. During that two weeks, I started out with very little sleep, but interestingly, as the symptoms reduced, my sleep, got better without having any drugs on me. When I say better, I mean instead of two hours sleep, I was getting four maybe five.

The medical literature is full of 7 to 10 year trials evidence of low-dose oxycodone being one of the best solutions for RLS for most people, and there’s no evidence in any of the trials of people becoming addicted. A web search will bring up all kinds of research papers and I believe Johns Hopkins has number of white papers Readily available out on the web also. But I will reach out to my team and see if they can send me directly some of those white papers which I will forward on to you.

One last comment is to try and meditate during your taper and drug change. As I said above it can be so traumatic, but staying mindful when you can through meditation and other relaxation techniques can really help.

[4inthemorning]

I’m really sorry to hear how this is going for you post surgery. My doctor at Johns Hopkins impressed upon me when I tapered off for ropinirol that I had to be off it for at least 10 days preferably 14 days before starting a new treatment which in my case was oxycodone. That treatment has been enormously successful as that two week drug holiday made all of my RLS symptoms way less severe. I’m now taking only 15 mg of oxycodone prior to bedtime and sleep throughout the night.

Having said this, I don’t want to minimize just how difficult and borderline traumatic it was getting unhooked from a dopamine agonist And then going for almost 2 weeks with no drug at all. During that two weeks, I started out with very little sleep, but interestingly, as the symptoms reduced, my sleep, got better without having any drugs on me. When I say better, I mean instead of two hours sleep, I was getting four maybe five.

The medical literature is full of 7 to 10 year trials evidence of low-dose oxycodone being one of the best solutions for RLS for most people, and there’s no evidence in any of the trials of people becoming addicted. A web search will bring up all kinds of research papers and I believe Johns Hopkins has number of white papers Readily available out on the web also. But I will reach out to my team and see if they can send me directly some of those white papers which I will forward on to you.

One last comment is to try and meditate during your taper and drug change. As I said above it can be so traumatic, but staying mindful when you can through meditation and other relaxation techniques can help

[Hami13]

Unfortunately I can fully understand just how difficult it is Milly. I took 12 weeks to come off ropinirole and move onto Gabapentin. Sleepless nights were regular and simply awful.

Now fully on Gabapentin. I can now nap in the afternoon for the first time in 2 decades and can also read a book in the afternoon/evening for the first time in 20 years. But my sleep has totally collapsed. 10 mins and then that me up and that is how it is every night. Dr has now put me onto Zopiclone Sleeping tablet which is addictive - so I am only getting it for three weeks and then try a non additive one.

I do think I might need to go back to a small dose of Ropinirole (0.5mg or 1 mg) together with Gabapentin (1800mg).

Not sure if any of this helps you but good luck,

J

[SueJohnson in reply to Hami13]

Lunesta is said to not be addictive or at least doesn't need to be taken for just a short time. But then, why do you care if it is addictive if you need it and aren't planning on coming off it? I sure wouldn't go back on ropinirole. You already know what that can do to you.

[SueJohnson in reply to Hami13]

I hope you are taking 600 mg gabapentin 1 to 2 hours before bed, 600 4 hours before bed and 600 6 hours before bed because it is poorly absorbed above 600 mg at a time.

[Hami13 in reply to SueJohnson]

Thanks with first message Sue and yes to second message. Thamks again.

[Baldrick123]

Ropinirole is very difficult to get off so given your recent surgery it is probably advisable to increase your dose of Ropinirole for now until you have recovered from the surgery.