Temgesic should I go even higher? - Restless Legs Syn...

Restless Legs Syndrome

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Temgesic should I go even higher?

bedith6 profile image
7 Replies

I am now taking 800mcg of Temgesic per day and still I am getting a lot of breakthrough RLS. I am wondering if I will ever be able to take enough to cover all my symptoms. Nights are still very disturbed and I still get some symptoms through the day. I know some people take 2mg buprenorphine which I believe is fairly high. Can anyone tell me the equivalent dose in mgs to 800 mcgs? Thank you

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bedith6
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7 Replies
SueJohnson profile image
SueJohnson

.8 mg

Jelbea profile image
Jelbea

Hello Bedith - I cannot answer your question about raising the dose again but others are on a higher dosage than you. Prof. Walker has suggested that I take 800 mcg daily but I have not increased above 600 mcg so far. I think I shall have to. Like you I am not sleeping well - usually awake from 4 am onwards. Does your mood drop in the mornings? I feel very down then and also get breakthrough of symptoms at any time through the day. Prof Walker suggested I take 200 in the morning, 200 late afternoon/early evening and 400 at bedtime. For you and me it does not seem to be working as well as for some! Wouldn’t it be great to get even one full nights sleep?

bedith6 profile image
bedith6 in reply toJelbea

Hello Jelbea. Thank you for your reply. Yes my mood is often very low in the morning. I thought maybe I was depressed because the Temgesic isn’t working nearly as well as I hoped it would. Like you I still get breakthrough symptoms during the day and can never go the whole evening without RLS and my nights are still disturbed. All this means I am going to have to increase my doses even further maybe by another 200 mcg. Please keep us updated as to how you are getting on. Regards

Joolsg profile image
Joolsg

I'm so sorry to hear that 800mcg is not covering your RLS.I know Shumbah is on 2mg or 2000mcg. So 2.5 times your dose. You would take 10 × 0.2mg pills to take the same amount as she takes. Currently you're taking 4 x 0.2mg pills.

If your serum ferritin is above 100 and you're not on any meds that trigger RLS, you may be someone who metabolises opioids very quickly.

The Mayo Algorithm does mention doses higher than you are presently taking so I don't see a problem with increasing the dose to see if it helps.

bedith6 profile image
bedith6

Thank you for your reply Joolsg, it has clarified the dosage so that I understand it now. 15 pills seems such a lot, I hope not to have to go up to that but I think I might try another 200mcg sometime during the day and hope that helps. Regards.

Biscuitface profile image
Biscuitface

I take 400 to 600 mcg Buprenorphine currently. I'm prescribed 700mcg but I feel that the more I take the more anxiety I get. Also getting dry mouth and dental problems. If I wake in the night I take 2 Paracetamol and put a hot water bottle on my legs. It seems to get me through the night. In total sometimes lately 6 to 7 hours which I think is amazing compared to how I was.

bedith6 profile image
bedith6

I am now taking 1000mcg Temgesic and still not getting a full night’s sleep.Also I am experiencing extreme sensitivity with my teeth which I am worried about, I certainly don’t want to go any higher so feel I either have to try something else (but what is left?) or just accept nothing is going to help me get a proper night’s sleep ever.

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