TEMGESIC AUGMENTING?

[rchobby]

2 questions - Has anybody on this forum experienced augmentation with Temgesic/Buprenorphine? And, is there a shortage of Temgesic in the UK? I am from South Africa and there is no Temgesic to be had here. I have been told by my pharmacy that Temgesic is manufactured in the UK but that there is a supply problem affecting South Africa.

[Joolsg]

I haven't heard of augmentation of symptoms on Temgesic. Possibly tolerance in the first few years but never increased symptoms. I am on generic Buprenorphine in the UK and haven't come across shortages here. I'll search to see if there is an issue.

That is worrying.

[rchobby in reply to Joolsg]

thank you Joolsig. As you can see by the time of writing my husband is having another terrible night. He has had to switch to the buprenorphine patch 20 and it has not helped at all. we cannot get a BP generic tablet here and now no Temgesic. any suggestions please, we are desperate.

[Joolsg in reply to rchobby]

Can you go to a hospital emergency room? Or try a drug rehabilitation centre. Buprenorphine is given to heroin addicts to help them off it so they would definitely have stocks.I'm so sorry to hear this. It's Sunday here and my pharmacist is closed. I'd normally ask him about supply issues.

[rchobby in reply to Joolsg]

That is a good idea many thanks. I will try the emergency rooms, will just have to get another prescription from our GP. I can't help wondering why the BP patch is not working. the RLS has only reared its ugly head again since we ran out of Temgesic. His iron levels are OK, we can't give him too much iron because he has Haemochromatosis (too much iron!) and his diet is bland, to say the least.

[Joolsg in reply to rchobby]

The BP patch delivers Buprenorphine in small doses steadily over 24 hours. The pills deliver most of the dose when needed, at night, and wear off over 22 hours so the patch often doesn't work so well for RLS ( which follows the dopamine cycle). The patch is more suited to constant, chronic pain.I really hope there's a drug rehab centre near you. If you show them your Script from the doctor and explain the local pharmacies have run out of supplies, they may be able to help.

Fingers crossed.

[rchobby in reply to Joolsg]

Gosh Joolsg, that explanation makes perfect sense, I am embarrassed to think I just didn't work it out myself. Do you think it would help to reduce the patch to 15 mcg and add a tramadol or oxy at about 8 pm to account for the drop in dopamine? I am not sure that one should be mixing opiods but my husband is desperate and now adds to the problem by getting anxious as 9pm gets closer. In the meantime I will try and source Temgesic as you suggested.

[Joolsg in reply to rchobby]

It is a possible option if you can't get alternative Temgesic or generic Buprenorphine in the meantime.This disease is so awful. We all recog that terrible anxiety as the evening approaches and we don't have the right meds. Sending positive thoights to you both.

If you can get hold of cannabis or kratom, they would both help until you can replace the normal meds.

[LanaCSR in reply to Joolsg]

I was going to suggest kratom as a temporary solution, too. At least that can be obtained without a Rx either online or in local shops. So maybe rchobby can get some outside of normal business hours.

[rchobby in reply to LanaCSR]

Many thanks for the suggestion, unfortunately we tried kratom a few years back and he had the same reaction as he had with gabapentin - wobbled all over the place!

[rchobby in reply to Joolsg]

Thankyou so much for your help, we reduced the patch to 15 mcg and added tramadol at 8 pm and he slept right through. What a relief. thank you to all of you who have kept us going over the past few years. we are so grateful to you all.

[Joolsg in reply to rchobby]

Pleased to hear that and I really hope you sort the supply issues. It's very worrying. Maybe ask GP to give you an extra 2 or 3 month's supply just in case.

[Jelbea]

Sorry to hear about your husband's suffering. How long has the patch been in place? It takes up to 72 hours to get to proper strength but you may know this already. I have been on patches (15 mcg strength) for two years and being changed to another medication. I do know that the patches are not as good for RLS as temgesic. My doctor would not allow temgesic tablets for some reason known only to himself. However, the patch should really give some help until you can get the tablets again. Joolsg advice is good and I hope you get the help you need.

[rchobby in reply to Jelbea]

Thank you Jelbea, my husband has had to use the patches (Sovenor in South Africa) for the past month. During the day he is fine, except exhausted, but the RLS starts between 9:30 and 10:00 every evening and he has no rest at all until about 4 in the morning. This never happened on Temgesic. He avoids oxalates and prepared meats containing phosphates and is not on any other medication. What does the forum think about him going back on to Oxynorm?

[SueJohnson]

Has he thought about going on gabapentin?

[rchobby in reply to SueJohnson]

Yes Sue he tried Gabapentin 300 mg recently but already had the Buprenorphine patch on and landed up stumbling around like a druggy. We got an awful fright so haven't tried again. should we have tried with a lower dose? Our GP has no idea of how to treat RLS but is willing to listen and will allow us to try anything we suggest.

[SueJohnson in reply to rchobby]

Since 300 mg is a very low dose and caused that, there is no point trying a lower dose because even if it did not have this side effect, it would be too low to do any good. He could try pregabalin which is basically the same thing just taken as one dose rather than in divided doses as one does with gabapentin above 600 mg. Although they generally have the same side effects, some people have found that a side effect that bothered them on one does not on the other. Another one to try is dipyridamole. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole (a blood thinner) discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

[rchobby in reply to SueJohnson]

Thanks Sue, will see our GP tomorrow and get a script for dipyridamole to try. He did try pregabalin but that caused muscle weakness and raised his CK levels alarmingly.

[LanaCSR in reply to rchobby]

Gabapentin is terrible with those side effects! I tried it and was dizzy, stumbling, and bumping into walls. There are much better meds for RLS that don't have those side effects.

[debchau]

I'm using neupro patch for my rls works great change it every 24 hours but it is expensive. No side effects

[hausbauer]

I cannot add anything to the excellent advice you have been given by fellow sufferers.

But with regard to Temgesic this is something which pulls on my nerves considerably. It has not been available in Austria for several months now. Thank god I have two doctors who know of my plight and so I was able to buy (either by insurance or privately) some left over stocks at pharmacies. I think I have telephoned about 50 pharmacies to be able to buy Temgesic which will last me until the end of year.

I have written mails to Dublin to the manufacturer (who is still manufacturing it), to the wholesaler in Austria etc etc. It seems that the licence for Austria was bought by a Swiss firm and the Licence holder and the distributor are still disputing over conctracts.

I try not to think what will happen or what I will do if no agreement is reached.

The pharmacists tell me that such things happen all the time.

[rchobby in reply to hausbauer]

Oh my gosh! I had no idea Temgesic was not available in other countries besides S.A. We share your anxiety! Perhaps you should also research the Buprenorphine patch and follow the advice of the wonderful members of this forum if, heaven forbid, we cannot get Temgesic again.

[Joolsg in reply to hausbauer]

Aagh! That is so worrying.