Dr. Buchfuhrer Visit

[Jimbo77]

Hello friends. I’ve just had the pleasure of traveling to California to see Dr. Buchfuhrer. What a caring and knowledgeable man. I wanted to share his treatment plan in the hopes that it can help others...

I was taking Gabapentin 1200 mg every evening at the time of my visit. He prefers Horizant or Lyrica due to the extended release properties. He switched me over to 600 mg Horizant and upped the dose to 1200 mg per evening when the 600 mg proved not to get the job done.

I am seeing a hematologist to get an iron infusion, as my ferritin levels were at a 90.1 ng/ml. He likes to see it closer to 200-300.

I am also seeing a Gastroenterologist on Friday for a SIBO test, and I’m also experimenting with the low FODMAP diet.

If the iron infusion doesn’t help, if I don’t have SIBO, and if the Horizant 1200mg doesn’t get me to where I would like to be, he wants to add in 1-2mg Neupro Patch daily. This dosage is never to be increased if/when it loses its effectiveness.

If I don’t tolerate the patch, or if I’m still not doing well at this point, then we are on to opioids. He didn’t specify which ones, but he definitely said that was the plan once we’ve exhausted all other options.

I hope this helps someone. Please reach out with questions or if I can expand on anything 😊.

[Hidden]

Marvellous, thanks for sharing this. Really helpful.

I hope all goes well for you.

[Joolsg]

That’s really helpful Jimbo. Thanks for sharing the info. I hope the iron infusion helps.

[Jumpey]

Many thanks.Good luck.Keep us posted.

X

[WideBody]

Thank you! Please keep us in the loop.

Horizant is ridiculously expensive, but I have tried it and prefer it to gabapentin.

I will have to look up SIBO diet.

[Jimbo77 in reply to WideBody]

I agree with you about preferring it to the Gabapentin. I don’t feel as out of sorts the following morning. It is ridiculously expensive for sure. Dr Buchfuhrer gave me a discount card. It would have been $1,200 per month without it, which is absurd.

[WideBody in reply to Jimbo77]

It wasn’t that much for me, but it was still at least $500 which is also absurd.

[Joolsg in reply to Jimbo77]

So grateful for social health care in Europe. We pay higher taxes than USA but meds cost us a standard £9 fee no matter what drugs are prescribed & totally free if over 60. I don’t know how poor people survive over there with RLS.

[Jimbo77 in reply to Joolsg]

It is crazy for sure. I honestly don’t know either. I hope you are doing well 😊

[Joolsg in reply to Jimbo77]

Fine thanks Jimbo. Good nights and bad nights but that’s what 20 years on dopamine agonists does to you.

At least I’m retired and can catch up on sleep in the day.

Hope you’re doing well.

[hausbauer]

Thank you for the information. I do not know Dr. Buchfuhrer personally but was so surprised that he writes back immediately to questions . A really caring doctor.

[Hidden]

Thanks for sharing, you are so lucky to have him in the USA, You know you are in safe hands for RLS treatment. Will be interesting to see which plan will work for you.

[Merny5]

Good luck to you Jimbo77

[Felicity21]

Very interesting. Hearing a Dopamine Agonist prescribed by (what we may assume as) one of the best RLS specialists in the world, in combination with Gabapentin. I am back on a DA (prolonged release Mirapexin) and have had a great time since March, although now adding 2 co-dydramole at night. Have been through the mill, from DA’s to Gabapentin and back as Gabapentin affected my eyesight. In my opinion a combination of drugs works best, whether it is GABA plus DA or DA plus opioid. But the point is DA’s are still a good drug for RLS as long as you stick to same dosage.

[Jimbo77 in reply to Felicity21]

Hi Felicity. I found this to be very surprising as well. I brought up my concerns to him based on some of the horror stories I’ve read about on this site. His thought process is that by keeping it at a low dose, that it won’t be near as damaging as when doctors continue to increase doses to unsafe levels. He said that it’s worth it to potentially buy us time before we have to go to opioids. He seemed confident that there is a lot of research being done by scientists that could potentially come up with new solutions to RLS, and that buying time was the right thing to do. I’m still very hesitant though, and am really crossing my fingers that the iron therapy or diet can prevent me from needing to add that into the mix 😊

[Felicity21 in reply to Jimbo77]

Hi Jimbo, I sincerely wish you all the best.

[Jimbo77 in reply to Felicity21]

Thank you very much

[Hidden in reply to Jimbo77]

The fact that he has decided on the patch 1mg/2mg and no higher to me at least he is thinking that the patch has a lower % of augmentation than the other DA's. so worth trying for you, altho the patch can and has done for many caused augmentation. Its possible you can use it for a long while, before he goes down the opiate route. I can understand your anxiety. Good luck and i hope the other options work for you before you need to use the patch.

[Jimbo77 in reply to Hidden]

Hi Elisse. Yes, he did mention that he believes the patch to have a much lower chance of augmentation. That being said, I’m still scared to death of the possibility of augmentation after reading the horror stories on this site. I hope something else works as well. I’ll keep everyone posted. Thank for your reply.

[Madlegs1 in reply to Jimbo77]

I know this is late, but augmentation will only occur if you up the dosage whenever the current dose ceases to be effective. If you stop at that point, and taper down, you will escape the worst effects.

That's not to say you won't experience some withdrawal symptoms, but you will not get the awfulness of upping the dose and having worse rls symptoms.

Augmentation is real, but only bad ,because some doctors prescribe incorrectly, and make the situation so much worse.

Cheers.

[Jimbo77 in reply to Madlegs1]

Thanks so much for the reply, Madlegs. I have my next meeting with Dr Buchfuhor in January and this is exactly what we will be discussing. He’s giving me the option of adding in the Neupro patch to the Horizant I’m already taking, or going straight to the Buprenorphine. I’m really torn because I’m scared to death of dopamine antagonists after reading the horror stories from people on here. Thanks again 😊

[Heatherlss in reply to Jimbo77]

The part about scientists doing research and coming up with different solutions is very very comforting to hear. Particularly after a very rough night.

Good luck ! Please keep us posted

[Dougg]

Thanks for sharing!

[jacklang]

im on 600 mg of Gabapentin and tiZANidine 4 MG tablet it seems to be working

[WideBody]

If you are not poor, our health system is designed to change that.

[Ebi1909]

Hi Jimbo, do you already know your result from the SIBO test? Additionally, was the test recommended by Dr. Buchfuhrer? As the SIBO/RLS connection was assumed by a Stanford study, I would like to know if Dr. Buchfuhrer sees it as a valuable test. Thanks!

[Jimbo77 in reply to Ebi1909]

Hi there. I haven’t received the results back yet. Yes, it was suggested because I had been feeling abdominal discomfort and bloating. It’s a long shot, but thought it was worth checking the box. Hopefully I’ll hear some results soon 😊

[Naominiki]

Hello whixh type of iron infusions did he want to try? Sucrose or dextrin?

[Naominiki]

Also how do you test fr sibo?