V.A. unable to adjust my opioid dose

[PLR111]

After 15 years on all other meds then augmenting on mirapex and trying many opioids that did not work was prescribed Buphrenorphen 1mg for RLS by my physician after Dr Walters at Vanderbilt conferred with her to get it done. I switched to the VA after I retired for healthcare. I never really got the dosage right and my VA doctor will not change it without someone else signing off.( VA paper trail). The VA sleep lab and neurology kicked it back saying they don’t treat RLS. I’m trying to get him to refer me to an outside Doctor. My problem starts with the Quality Care Center at Vanderbilt where I had seen Dr Walters in 2018 but had to stop because he couldn’t prescribe opioids as I live in Oklahoma. I cant talk to anyone at The Quality Care Center about how or if I can get Dr Walters or another specialist to see me and adjust my meds and somehow get this done with my VA doctor. Because it has been more than 3 years I am not allowed to message Dr Walters or even talk to his office. I am now a new patient. Someone please tell me how I can get a doctor from Vanderbilt to get this done. What Doctor besides Dr Walters can I give to the VA as a referral? I am getting desperate and need to get my med adjusted! Very hard to describe situation on this format. Every step of my journey has been a challenge because of the word “opioid” My former Doctor who initially prescribed now is on a concierge plan and I am unable to use her if even she would or could. No other Doctors in Tulsa area know anything about RLS and low dose opioids. “Say the word opioid and watch em run” Any help is welcomed. Paul R

[ViewsAskew]

Hi Paul - that sounds like a very difficult situation. The FDA and state guidelines for opioids have made it so difficult for so many of us.

Some of the doctors used to work with out of state patients, but the only one I am sure that still does is Dr Buchfuhrer in Downey, California. BUT, state law requires you see him IN the state of California, then after that, he would be a able to talk to your doctor.

You might want to call his office to verify that. I actually moved to California so I could just make him my doctor of record, so what worked for me in the past may not be how it works now.

[Rustsmith]

Paul, I have two suggestions for you. The first is that there is a QCC in Houston where Dr Ondo is the treating doctor and is very good. Since you are in a neighboring state, often doctors are allowed to prescribe to patients in neighboring states (at least they were but the FDA and CDC are constantly changing the rules).

The second doctor is Doctor J. Andrew Berkowski. Dr Berkowski primarily sees patients via virtual appointments. If you can get an appointment with him, that might be your fastest alternative other than Ann's suggestion of Dr B in California.

[jul2873]

Hi Paul,

My husband is retired Navy as well, and I was also in the Navy for a couple of years. He sees the VA here in Pennsylvania for his hearing loss and diabetic needs. (He was in Vietnam when they were using Agent Orange, and the VA decided that caused his diabetes.)

Anyway, we've found out that his care for hearing loss is excellent in the VA, but for our other care we use Medicare and Tricare. We love Tricare, because we can make an appointment with any doctor, and Tricare will cover. (It may be because there are not enough retired military where we live for them to make a group practice.) Tricare covers even out of country care. I got sick on a Disney cruise and Medicare would not pay a dime, but Tricare covered almost all of it. I think it may be "Tricare for life" but not sure. We just use our military ID cards for our insurance cards for it. So if you haven't yet hooked up with Tricare, I think you should check it out. I'm going to a civilian hematologist now and I think almost the total cost is covered by Tricare. And Tricare is covering almost the whole cost of Repatha, which is a new drug for high cholesterol, and costs about two thousand a month. Medicare wouldn't cover any of the cost.

The other thing that has really helped me is kratom, which I've taken for the last ten years. It works like a mild opioid. All the best to you Paul.

[PLR111]

Thx for all suggestions . Im working on them one by one. My wife is in chemo for cancer so I have many things going. Thanks for the RLS community. You are caring and awesome!

[Greenleaf360]

Hello Unable. I'm posting here first time. Forgive me while i learn the ropes. Have you tried gabapentin? Do you know your blood ferritin level? I have this one doctor reported to treat rls in Oklahoma.
Dr Robert M. Gordon*
(405) 286-5946
4200 W Memorial Rd Ste 805
Oklahoma City, OK, 73120

Im curious why various opioids failed.
- dosing is critical
- most meds will not overcome augmentation. You have to be 100% finished detoxing from ropinerole and pramipexole before any med can be expected to calm rls.
- antidepressants and antihistimines will aggravate rls. You need to be free of these before gabap or an opioid can provide relief.
- if your augmentation was long term and/or severe it can impact detox time.
- this doctor in Austin gets good reviews.

Subhashie Wijemanne*
(512) 241-1567
Austin