Where do I go from here?

[Brynmr]

I've been on 3,000 mg of Gabapentin for about 2 years, longer for smaller dosages. Last year 5mg of oxy was added then 10 - 5mg around midday then 5mg at midnight. Now post cancer op (1/31/2024) I'm finding it's not quite enough. I sometimes can't get though the night on 5mg. I asked my GP to increase to 15mg oxy but he declined and suggested I take .25mg of Ropinirole. I said I tried that before going on Gabapentin and it didn't work but that I'd give it another try. Well, I did and on the first night it didn't do anything but get in the way of the oxy. At 3 in the morning I had to take another 5mg oxy to relieve strong symptoms (which worked) and besides that it felt weird like there was something else going on. It was not good.

So where do I go from here. I'm hoping I can get by on 10mg a day because I don't want this Ropinirole stuff. The thing is - and you guys all know this - I get oxy 60 pills a month so if I need that extra pill at 3 in the morning, I have to do without my midday pill to make up for it. Man, this sucks. I hate this disease.

[Rustsmith]

In addition to the RLS management document that the link in my signature points to, you might also share this document with your doctor. It explains why opioids are required to treat "refractory" RLS, which is what we have after augmentation. https://www.mayoclinicproceedings.org/a ... X/fulltext

I would also strongly suggest trying to get an appointment at one of the Quality Care Centers. I suspect you will need to travel to reach one of them, but the expense is well worth it. We have a number of our members who travel cross country to one. Just keep in mind that demand for appointments at the QCCs are high, so you may need to wait a few months for the first available appointment.

[Brynmr]

There's a Quality Care Center 4 hours from me in Atlanta Ga (lucky me). I'll be getting in touch with them very soon. In the mean time I'll read up on them and pass along the opioid studies to my GP. Thank you!

[Brynmr]

Not so lucky me. Atlanta is not accepting new patients at this time.

[Brynmr]

From the Quality Care Center, medications for RLS treatment:

1st line treatment: Iron and Gabapentin
2nd line treatment: dopaminergic medications

No mention of opioids which is curious.

[Rustsmith]

One of the requirements to become and RLS QCC is that they must be prepared to prescribe opioids for refractory RLS. The medications that they listed are consistent with the current recommendations, namely iron first followed by gabapentin/Horizant/Lyrica with dopamanergics after that. They probably didn't mention opioids because they don't want to be deluged by people seeking opioids for other conditions and claiming to have severe RLS.

[Brynmr]

I see. That makes sense. I'll see about getting my name on a waiting list in Atlanta if they have such a thing. Also, I'll ask my doctor to check my iron levels to see what's going on there. Over the past 3 weeks after the operation I was on such a heavy dose of oxy the symptoms were never an issue. I went from 50 - 60 mg of oxy a day down to 10 - 15 mg a day once I no longer needed them for post op pain. I'm not trying to get more oxy. I don't want to be taking them. I wish I didn't have to. I want to be normal again. But these RLS symptoms (not oxy withdraw or anything like that) are intolerable when they come on at 9 in the evening and about 3 in the morning. I'll do anything to avoid them.

[Rustsmith]

When you ask your doctor to check your iron levels, be sure to ask to have your ferritin checked too. Ferritin is not part of the normal blood iron test and is the most important iron criteria for RLS. Further, when you get the results, don't accept a report of "Normal", be sure to the the number. The normal range for anyone who does not have RLS is anything over 20. With RLS, it needs to be over 100.

[Brynmr]

When you ask your doctor to check your iron levels, be sure to ask to have your ferritin checked too. Ferritin is not part of the normal blood iron test and is the most important iron criteria for RLS. Further, when you get the results, don't accept a report of "Normal", be sure to the the number. The normal range for anyone who does not have RLS is anything over 20. With RLS, it needs to be over 100.

Thanks Steve - will do. This is important info which I would never have thought of.

[Roughrider]

Where are you located? Vanderbilt in Nashville, TN is a quality care center I believe and Dr. Arthur Walters practices there.

[Brynmr]

Where are you located? Vanderbilt in Nashville, TN is a quality care center I believe and Dr. Arthur Walters practices there.

I'm in SC Upstate. 6 hour drive. You know with all the amazing technology these days I don't know why we have to be there in person. Our GPs can verify all the vitals/information. Let's bring all this into the 21st century.

[Rustsmith]

There are two issues. First is that the FDA's telemedicine rules require that you must already be a patient of the doctor. That means that you must have an in person appointment before you can use telemedicine. The FDA recently tried to do away their pandemic rule that allowed telemedicine and they were quickly inundated by messages from all levels (patients to doctors to medical societies) telling them that telemedicine works and stopping it is a stupid idea.

The other issue has to do with the rules surrounding writing prescriptions. Those rules vary from state-to-state, but usually also have the established doctor-patient relationship to avoid greedy doctors from starting up pill mills.

[Roughrider]

I'm in SC Upstate. 6 hour drive. You know with all the amazing technology these days I don't know why we have to be there in person. Our GPs can verify all the vitals/information. Let's bring all this into the 21st century.

6 hours isn’t bad, I’d say it might be worth the drive. I was considering flying out to Johns Hopkins to see Dr. Allen (RIP), but I was fortunate enough to be close to Dr. Walters so I chose Vandy. The other option would be a bit more work, but I’ve had good results performing my own research, reading through papers and then taking these into my physician. Best of luck with your decision.

[Brynmr]

There are two issues. First is that the FDA's telemedicine rules require that you must already be a patient of the doctor. That means that you must have an in person appointment before you can use telemedicine. The FDA recently tried to do away their pandemic rule that allowed telemedicine and they were quickly inundated by messages from all levels (patients to doctors to medical societies) telling them that telemedicine works and stopping it is a stupid idea.

The other issue has to do with the rules surrounding writing prescriptions. Those rules vary from state-to-state, but usually also have the established doctor-patient relationship to avoid greedy doctors from starting up pill mills.

I figured as much. Government agencies are not the friend of liberty. The rules are not designed to help the patient so much as to cover the rear ends of the agencies and likely, politicians.

Last Thurs night I followed your suggestions and sent the Mayo Clinic studies on opioids link to my GP. I also asked to have my iron levels checked, so too my ferritin number. This all done through My Chart messaging. He's a pretty good doctor but slow to respond to messages. Still waiting to hear back. I have not idea what to expect.

[Brynmr]

I'm in SC Upstate. 6 hour drive. You know with all the amazing technology these days I don't know why we have to be there in person. Our GPs can verify all the vitals/information. Let's bring all this into the 21st century.

6 hours isn’t bad, I’d say it might be worth the drive. I was considering flying out to Johns Hopkins to see Dr. Allen (RIP), but I was fortunate enough to be close to Dr. Walters so I chose Vandy. The other option would be a bit more work, but I’ve had good results performing my own research, reading through papers and then taking these into my physician. Best of luck with your decision.

Thanks for the tip. For now the latter. We'll see how that goes.