New-Asked to post about treatments

[RestlessNan]

HELP! What should I do? Folks, I need feed back. Will I be on Neupro for life and drain my resources? Is there an alternative. I need input.

Hello, I am so sorry to hear what you are going through! I have been there and understand what it is you are going through and the tough road you have been on.

You asked for feedback and here is mind, I would suggest stopping the Neupro, you will eventually augment on it and have to ween off it. Also, if you are anything like me, your body is already used to the medication and it will want more of it sooner rather than later. When I switched to Nuepro, I was tramadol and had augmented, I went from the lowest dose patch 2 or 3 mg to the highest dose in 6 months. Stop now.... I was on Mirapex 5-8 years earlier, before the tramadol, and my body just knew and it adjusted to the Nuepro right away and just wanted more and more of it. I don't know if it is just me, or if everyone adjusts to DA's the same way, but don't take a chance.

I am now taking 4 each - 5mg instant release oxys during the day and 1 each - 10 mg extended release 0xy at night and that seems to help. I still have some breakthroughs and am going to ask my neurologist to up my dose of instant release to 7.5 or 10mgs and add one more pill to my regimen.

Also, if you can get into one of the Quality Centers and find a doctor who knows about RLS and listens to you, that is your best chance at finding a way to manage this disease. There is not a Center in NY but I did find a good doctor from the list, I was going to go to the one in Pennsylvania, I actually had an appointment but was able to get into the Albany Movements Center faster and this doctor has been working out well for me. My new doctor, though she does use the portal, I send her messages and she gets back to me right away. She listens to me and doesn't judge me. I feel like a patient who has a disease that is recognized like asthma or arthritis. I am not brushed off, I feel seen for the first time in a long time with this disease. And she listens to me about what I would like to try when it comes to my meditation and other things. I mentioned my iron and she ran an iron panel for me. Like I said it just feels good to be heard.

Good luck I hope you find the medications and a doctor who knows more and has compookassion that will work for you and with you! Lissa

Thank you for your encouragement and advice. I need some extra compassion right now.

[Rustsmith]

Quality Care is 3 hrs away at Mayo, anyone been there?

I don't have any specific information about the Mayo QCC. I have only heard a couple of negative comments from people who have gone to QCCs, usually the comments are along the lines of "wonderful care", someone finally understood or "they saved my life". The negative comments were generally about specific doctors. Like any clinic, when you go to a QCC, you may get assigned to a doctor that is new to the clinic or whose personality just doesn't mesh with yours. But the chances of that are much smaller than non-QCC clinics.

Your other option is to take a copy of the document that the link in my signature points to. Highlight a couple of relevant paragraphs and then hand it to your doctor and ask for his/her opinion. Some doctors are receptive to information from their patients and than us, others have said "I don't have time for this" due to their arrogant attitudes. The one warning if you go this route, DO NOT SAY "I found this on the Internet". Instead say something like "this document was written by a number of leading RLS experts who are all advisors to the RLS Foundation".

[RestlessNan]

I submitted my request for an appt to the Quality Center at Mayo on 1-6-24. It said I should receive a phone call within 3 days, I'm making myself very available. I've made notes to keep my information accurate when asked questions that I'm anticipating some questions. My spouse and I have revisited the situation and are making plans to be gone. I'm seeing my PCP this week and will lay out the plan to him and hoping he'll renew the opioid contract I had with him and also bringing the most pertinent literature without overwhelming him. I was under the impression that the present is a "Quality Care" provider, but I can't find that designation for him when I searched for the information again. I'm asking for my records from his office before any documentation is "lost". Am I sounding a bit paranoid? Regardless, what more should I have ready. I know the appt. at Mayo could be months out but what if....? Anymore suggestions are welcome It was suggested that I stop the Neupro patches, I'm wondering if I can do that with the small amount of Methadone I have to support and cover the pain? What else is there without having augmentation involved.Neurontin didn't work for me. I'm going to rattle off some meds that aren't opioids to see if anyone has knowledge of them. Here goes: Tegretol, Levo-dopa, Sinemet, klonipen, cogentin, Depakote, and 2 more that are similar to neurontin but I stuck on their names. Thank you. Does anyone want to be my penpal for support?.

[Rustsmith]

Tegretrol is an anticonvulsant that is also sometimes used to treat nerve pain (neuroalgia).
Carbidopa/Levodopa and Sinemet are the same thing. They are the natural form of dopamine. They act fast and only last for a short time. They are also the fastest way to augmentation.
Klonopin is a benzodiazapine that was used to treat RLS before the introduction of the dopamine agonists. It can help, but his a habit forming sleep med that is extremely difficult to get off of (tapering takes months). There are also indications that it can hasten the onset of dementia for those who use it. Its primary use these days is the treatment of REM Sleep Behavior Disorder, a precursor of Parkinsons and Lewy Body Dementia.
Depakote is a med that is used to treat bipolar disorder, seizures and to prevent migraines. It is supposed to restore the balance of some neurotransmitters in the brain. RLS is not due to an imbalance, the current theory is that iron deficiency causes the adenosine receptors to stop working correctly and that this blocks the proper functioning of the dopamine and glutamate receptors. The blocked receptors result in a buildup of dopamine (which causes our movement issues) and glutamate (which causes our insomnia). Treating with dopamine agonists and glutamate meds (gabapentin and Lyrica) just forces the remaining receptors to work harder.

[RestlessNan]

Thank you, Steve. That was very helpful. I only had anecdotal information about their use. It seems that Neupro is a last resort unless one has a bulging wallet. I'm into it for another month, I shelled out the $650. The symptoms were fairly bearable for about 4 days and then, although nothing was different that I knew of, the leg pain raised its ugly head last night for a few hours after an extra dose of methadone, walking, crying, cursing and whatever. I am at the point that going with on opioids seems the most palatable. The missing link is, someone to order that and stay true to the course without my having a beg for a monthly refill. Is this how it is for people? I need feedback. Thanks.

[Rustsmith]

Nan, the key is to develop a relationship with a doctor who understands that you are taking an opioid to treat your RLS and not for pain relief. Also, the doctor needs to understand that you will need monthly refills and that delays in processing the refill are not acceptable. This can require a bit of educating the doctor on your part, but once you develop that relationship you will have a long lasting bond. The doctor may ask you to sign an opioid contract (probably will). Read it very carefully because these contract are often designed for pain patients and may be designed to eventually get you off of any opioid. I was given one by one doctor that had conditions that would have been impossible to comply with over the long term. When I pointed this out and asked to "edit" the contract, the doctor's supervisor at the clinic became irate and told me to sign or go elsewhere (I went elsewhere).

Also, here is a link to a publication that you can use to educate your doctor about how opioids for RLS is different from prescribing them for pain. Be prepared to share this with your doctor. A doctor who is willing to be educated may thank you for it. https://www.mayoclinicproceedings.org/a ... X/fulltext

Good luck, and remember that this will be a journey and may have some bumps in the road along the way.

[RestlessNan]

Thanks again Steve. I made some headway this past week, going back to the PA I was seeing about a year ago, I had a contract with him for opioids that I had required for a long time due to chronic pain. This changed with the neurologist as he would only prescribe some related to the RLS. Even though he (the neurologist) has come through and said he'd cover me until I found a more permanent prescriber. My old PA will also cover me if the neurologist falters. A referral was sent to Mayo along with records. I gave the PA sound information from Mayo about RLS and the algorhythms, so he gets what I'm doing. This was very reassuring and takes some weight off my shoulders about the uncertainty I was experiencing. Now, it's a waiting situation to see when and I hope not if I can get into Mayo. A confusing thing for me is that the neurologist is Mayo trained. He must be somewhat of a renegade in this area, he is highly regarded in sleep medicine. I'm also getting some help from another group for the more orthopedic type of pain I'm experiencing and will get another epidural type injection coming up. I'm going to just try to shut-up for awhile and be grateful for this site, listen to what others have to say and hope a miracle comes along is the world of RLS.

[IndyRPh]

I am a patient at a pain management clinic and I am prescribed Tramadol for chronic pain due to multiple issues (herniated disks, degenerative scoliosis, rheumatoid arthritis, fibromyalgia to name a few). I had to sign an opioid contract as well. It states that I can I can only have opioids prescribed from this clinic.
If I am understanding it correctly, if I go to a quality care center for RLS and an opioid is prescribed, I will be breaking the pain management contract. I am dealing with augmentation and I have been able to reduce my Mirapex dose from 1mg to 0.125mg over many months, but whole body RLS continues to be an issue which then exacerbates my chronic pain. I do not think that Tramadol is a strong enough opioid to deal with augmentation.
Any advice?

[Rustsmith]

I have a couple of comments. First, the max dose of tramadol is 400mg. That should be enough to cover any issues while withdrawing from a dopamine agonist due to augmentation. Second, there is an ER version of tramadol that you only need to take once a day.

As for violating of your opioid contract, simply going to a QCC would not violate the contract. The way most of these contracts are worded, you would not be in violation unless you actually filled a prescription for an opioid that was written by another doctor (as such as one at a QCC). But that depends upon the specific wording of your contract.

If I were in your situation, I would do two things. First, I would speak with the doctor at the pain management clinic to let him/her know that you will be seeing a doctor to treat your RLS at a QCC and that there is a good chance that the QCC doctor will want to prescribe an opioid. Then ask the pain doctor whether (s)he would be willing to work with the QCC doctor to adjust your pain medication to cover both conditions. Then, when you see the doctor at the QCC, tell them about your pain management contract and ask them to work with your pain doctor. Many doctors want to help and the QCC doctor should be willing to send a message to your pain doctor telling him/her how your medication level needs to be adjusted to treat your augmented RLS.

[IndyRPh]

Thank you Steve-I will contact the pain management doctor. I am currently taking 200mg of Tramadol daily (not XR). The doctor seemed hesitant to increase the Tramadol dose but the RLS symptoms are out of control which of course worsens the pain.

[ViewsAskew]

There are a few people here who get their WED/RLS treated at pain clinics. Squirming Susan was one of them - unsure if they still do or not.

And some of the Quality Care docs will work with your PCP or other doctor - that is likely the best of all worlds IF your doc will work with the Quality Care doc.

[Lissa496]

Thank you Steve-I will contact the pain management doctor. I am currently taking 200mg of Tramadol daily (not XR). The doctor seemed hesitant to increase the Tramadol dose but the RLS symptoms are out of control which of course worsens the pain.

Hi IndyRPh, How long have you been on the tramadol? I only ask as you could be augmenting from it if it is not helping. If you have been increasing the tramadol dose that could be an issue.

I started augmenting on tramadol after a few years, I started on 50 mg three times a day and it worked great but after about a few years I was up to 100 mg three times and day and it no longer helped and I was in a lot of trouble as there was nothing I could do and the doctor would not let me increase my does any higher. Just be careful!

Best of luck ~ Lissa

[IndyRPh]

Hi Alissa,
I have been on Tramadol for several years and yes, I have increased the dose in the past year due to another herniated cervical disk.
Thank you for the warning on augmentation from Tramadol-I don’t see much in the literature about Tramadol augmentation, only the dopamine agonists.

[Rustsmith]

IndyRPh, although it is possible to augment on Tramadol, it is an unusual situation with only a few cases documented in the literature. Even the experts have no idea why it happens, just that it has been reported to occur in a limited number of cases.

[IndyRPh]

Even if this is not Tramadol augmentation, the max dose of Tramadol pain management will prescribe is 200mg daily, which is not enough to control my symptoms.
I wish I had never heard of dopamine agonists - I read someone else referring to them as dopamine agony, and I absolutely agree with that description.