Temgesic still not working well

[bedith6]

Yet another query which I am hoping you knowledgeable people will be able to help with. Very, very disappointingly despite taking 1000mcg of Temgesic in two doses my RLS is still very troublesome. Part of my problem is that I go to the toilet about five times at night and each time it sets off the RLS. I am thinking of asking my GP if there is a suitable medication to stop this nightly problem but wonder if anyone knows whether this type of drug could be a trigger to worsen RLS. I cannot yet get an appt. with my neurologist but am still hopeful that an iron infusion may help. If not I am at the end of the road and don’t know what else to do for some peace in what little remains of my life. As you can probably detect from this post I am very depressed but am still open to suggestions and help. Thank you

[Jelbea]

I am so sorry Bedith that you are having such a bad time on the temgesic. I, too, am on temgesic and it is not the miracle cure I thought it was going to be. I take 700 mcg in divided doses. Unfortunately I seem to process temgesic much too quickly. I had been on buprenorphine 7-day patches and they were only lasting me 3 - 4 days and for the rest of the week I was in misery. I contacted Professor Walker as I could not get a neurologist for approximately 3 years in Northern Ireland. He agreed to me changing from the patches to the sublingual tablets and I was delighted. However, that was short-lived. I was started on 200 mcg early evening and 200 mcg at bedtime. I would get to sleep OK but only got 4 hours of very broken sleep every night. Like you, I also have to get up at night usually three times. I take a chemotherapy capsule every day and have to drink lots of water all the time, consequently the need to get up at night (together with the ageing process - I am 80).

The dosage of temgesic has been adjusted several times since I started earlier this year. My problem is that when I awaken at 4 or 5.00 am I feel so sad and depressed and it is just horrible. Apparently I was getting withdrawal symptoms because I used up the drug so quickly. Professor Walker has me on the following at present: 100 mcg first thing in the morning, 100 mcg at lunch time, 200 mcg early evening and 300 mcg at bedtime. I am sleeping slightly better but still awakening very miserable. Through the day the 100 mcg dosage helps my mood but does not last until the next dose. I know you, like me, are probably feeling depressed just with your condition and tiredness but do you think the temgesic adds to your depression. It is certainly affecting me adversely.

Also like you I feel that I am at the end of the line for treatments. I was on oxycodone for two years before starting on buprenorphine and it worked reasonably well but my GP would only give me 15 mg and I probably would have needed at least 20 mg. daily but he refused. However, Prof. Walker has suggested trying oxycodone again at 10 mg. twice daily and I am thinking seriously of doing this (I am now with another GP practice). I feel the terrible ups and downs I experience every day are very detrimental to my wellbeing. I am not making up my mind just yet as I have applied for medical cannabis and just waiting for the OK to come through. The doctor there told me it should help anxiety, depression and insomnia and also can be beneficial for my blood cancer. I am at the stage I would try anything.

This is a long reply but I do feel that no matter how I increase the temgesic I will still be getting the ups and downs. I also feel when I increase it I feel more dopey and out of it if you know what I mean.

I send you love and hope you can get some help very soon.

[TeddiJ]

I just wanted to reach out from the US and say I am so sorry about what you are going through. The nights can be so long and depressing.

I am no help with your official prescription issue but I was thinking that what I am doing right now might help you out so you can get some sleep asap. If you get some sleep you will feel less depressed, of course. I would order some red vein kratom powder (I think you have to order it as "tea" from Scotland when in the UK) and it should stop your rls within minutes. You just put a teaspoon of it in water and drink. It's not an ideal long term solution but it helps so much when one is desperate. It also helps with sleep.

Also see if you can get your hands on either THC gummies or THC that you might have to vape or smoke ( I don't like smoking but they say it is just one hit and it works). I am using Delta 8 gummies right now-which is synthetic THC. It does help you to sleep through issues more easily. I know people in the UK are able to get their hands on THC-ck Joolsg posts or directly.

There are also many posts on here about CBD oil and how much it has helped people. Perhaps one or all of these things can help calm your bladder or at least help you to sleep through it more.

Are you taking a couple of iron pills every night before bed? Try it that way specifically, as it just might help.

[ChrisColumbus]

I'm sorry to read of your problems. I hope that you'll get a number of knowledgeable responses about Temgesic and about nocturia, of which I'm afraid I know nothing. Sorry.

You mention a possible iron infusion: what were your last serum ferritin and transferrin saturation numbers? What iron supplementation have you tried?

If iron isn't the real problem - it wasn't for me - have you tried magnesium supplementation? For me, 400-600mg of Magnesium Citrate a day had an immediate effect. Unfortunately, like iron supplementation, magnesium only works for some.

For me, sugar and particularly artificial sweeteners are triggers. Others suffer from various other dietary triggers. Presumably you've already looked into this....

Statins were my bete noire. What other prescription and OTC medications are you on: you've probably already eliminated known RLS triggers from your regime...

I do hope that you find answers: my RLS (currently largely in abeyance) was comparatively mild, but I know how miserable it us!

Best wishes

[bedith6]

Thank you for taking the time to reply. Yes I take magnesium supplements and also rub magnesium spray onto my legs at night. I have cut more or less everything from my diet that I knew were triggers even my great enjoyment which was a glass of wine with dinner. I am carrying on for the moment with the Temgesic hoping it may begin to work if I can get something for the nocturia.