Seeking advice for changing from Temgesic to Gabapentin for treating my refractory RLS.

[Jules1953]

I have moved to a new area and need to change Doctor. I had a double appt last week and the new Doctor refused to prescribe Temgesic. I have been taking tbis medication successfully for 2 years now.

I am having my medical records sent through to the new medical practice.

I thought I should look into changing to Gabapentin as I will have to face this problem at some stage.

I know many of you are successfully using Gabapentin to control your RLS. So would appreciate if you could share your experience, such as side effects etc and how you feel during the day. What dosage to start on and if I need to wean off the Temgesic. Temgesic is low dosage of Buprenorphine, a synthetic opioid medication.

I have suffered with Restless legs for 52 years now and have been through the hell of being on dopamine agonist medication and experiencing augmentation.

I have asked my new doctor to do some research into the latest research on RLS. She said she is limited by the guidelines set out for the medical profession in Australia.

But she will do some research to increase her knowledge.

I have book another appt with her on Monday.

Kind regards Julie

[SueJohnson]

You might want to print out the section on opioids in the Mayo Clinic Updated Algorithm on RLS to show your doctor at Https://mayoclinicproceedings.org/a... . Also you might ask your old doctor if s/he will send a letter (email) to her telling her how well it works for you. If she still refuses to prescribe the temgesic you will need to wean off it. On the gabapentin the beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective so I would not reduce the temgesic before that. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of it and don't take calcium within 2 hours.

[Jules1953 in reply to SueJohnson]

Thanks Sue, for all the information. Do you take the Horizant Version of Gabapentin or the Gabapentin ?

[SueJohnson in reply to Jules1953]

The only reason to take Horizant is if you have symptoms during the day.

[Jules1953 in reply to SueJohnson]

Thanks for the information Sue, very much appreciated. Julie

[SueJohnson]

Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[ChrisColumbus]

Got an Alert that you'd 'mentioned' me SueJohnson !

[Shir_11]

Hi Jules

I would be interested in how you go coming off Temgesic and starting Gabapentin. I have been on Temgesic now for 4 years after 40 years of RLS. I would like to change meds but afraid to go back to the suffering I once had.

I have just moved and changed doctor and she has no trouble prescribing Temgesic. Must say I was worried she wouldn’t. If I were you and wanted to stay on Temgesic I would find another doctor. I am in Australia. All the best.

[Jules1953 in reply to Shir_11]

Thanks for your message. Where abouts in Australia are you located. I am in Western Australia. I have come across so many doctors who are negative about prescribing Temgesic. I get very anxious about going to the doctor now due to the unsympathetic way I am treated. Kind regards Julie

[Shir_11 in reply to Jules1953]

You are right. There are so many doctors who won’t give you opioids. I was very lucky to have found this doctor. I am now living in the Gold Coast Queensland. I think at our age, doctors should understand that quality of life should be top of the list and not dependency on opioids. I started off the Temgesic by going to a drug clinic for the first prescription and then to my previous doctor.

[Joolsg]

I'm so sorry to hear this. When a medication has worked so successfully, it is cruel and barbaric to refuseto continue prescribing it. The same happens here in the UK.It's absolutely critical that we get trials of Buprenorphine in the UK to allow it to be licensed for RLS.

I know that the USA will accept clinical trial evidence from the UK, but it doesn't work the other way round.

Hopefully, if we do manage to get clinical trials and Buprenorphine is licensed here in the UK, then Australia will accept the evidence.

You will experience opioid withdrawal symptoms if the new doctor withdraws Buprenorphine.

It's my greatest fear.

I will definitely chain myself to the railing of the RCGPs if they ever stop my Buprenorphine. It's the only med that has stopped my severe, refractory RLS.

[fuzzie]

Hi, I very rarely comment on this forum but in this case I feel I must.

I'm in the UK, For years now I've been on various Opioids, (oxycodone, Targinact and for the last year Buprenorphine 8mgc per 24hrs. I suffer from severe refractory RLS.

To stop any opioid cold turkey could be very dangerous, at the least it will make you sick, you must taper off very gradually. This is aside from the torture of your RLS going through the roof.

It is irresponsible for a Doctor to do this to you.

I hope that you can get more help with your next appointment.

All best

[Jules1953 in reply to fuzzie]

My second Doctors appt went well today. And we came up with a plan for me to slowly wean off the Temgesic medication I am currently taking. And at the same time slowly introduce the new Gabapentin medication. Only time will tell how well this goes, I will keep you all informed.

I came away feeling better about things. X

[Nikon-]

why don’t doctors ever push the boundaries a little

Good luck Jules