V.A. Health network RLS information/request

[Bloodhound669]

I have an appointment for my annual check-up on the 19th. Before my upcoming visit, I emailed my provider about augmentation and the pramipexole, but they have not answered other than a query about what 'augmentation' means. I have read a few articles the V.A. has on the V.A. website and, in my opinion, they seem not completely to understand or want to spend time on the subject. I feel that a lot of the confusion, or lack of concern, is that many people want to file for benefits, this will always put the walls up. Anyway; I understand that they can prescribe several different things but which one they may choose for me will be a gamble. These are Gabapentin, Ambien, Cymbalta, and Levodopa/Carbidopa. Also, one article mentions Rotigotine Transdermal Patch, Burosumab-twza Injection, and Ropinirole. Not knowing what med, or if they change it at all, would be best. These articles, if time taken, are inciteful as to the way they look at RLS. Some comments I find sadly amusing.

va.gov/vetapp22/Files10/220...

va.gov/vetapp12/files4/1229...

Here is where they explain, in brief, what RLS is.

veteranshealthlibrary.va.go...

[SueJohnson]

You do not want Cymbalta, nor Levodopa/Carbidopa nor Rotigotine. Cymbalta makes RLS worse for most and Levodopa/Carbidopa , Ropinirole and Rotigotine Transdermal Patch (Neupro) are DAs. Ambien is a sleeping pill and is OK - won't help RLS. I can't imagine why it mentions Burosumab-twza Injection as it has nothing to do with RLS.

[SueJohnson]

I assume you told them what augmentation is.

I gave you the information on how to come off of pramipexole and how to take gabapentin. Do you still have it? If not I will be glad to repeat it since you know they will probably say to just stop it cold turkey.

[Bloodhound669 in reply to SueJohnson]

If you are referring to mayoclinicproceedings.org/a..., then Yes. It's lengthy and I don't know if she will take the time to read it. I'm not sure that she even looks into the possible interactions of my drugs. I will mention gabapentin to her and see what she says or does.

[SueJohnson in reply to Bloodhound669]

No although you could print out appropriate sections to show her.

I meant my advice I believe I gave you on how to reduce the pramipexole to come off it, when to start the gabapentin and how to take it. Here it is healthunlocked.com/rlsuk/po...

[Bloodhound669 in reply to SueJohnson]

Thank you! I have printed the section from your correspondence and will take it with me on the 19th.

[Joolsg]

Sadly you have come across outdated advice which shows the VA need to update their knowledge and training on RLS.It's a common, worldwide scandal.

Doctors aren't taught about RLS in medical school or during ongoing training. The only doctors who are fully aware of the disease, and how to treat it effectively, are those who have treated thousands of patients and developed an expertise. They are the ones who realised dopamine agonists had turned on the patient. They also realised RLS patients needed brain iron stores via higher blood serum ferritin.

You can ask the VA doctor to look at RLS curbside.

It's a free site set up by the RLS foundation in the USA and allows healthcare providers to ask questions and get help treating RLS. Ask the VA doctor to use it.

And follow SueJohnson advice on getting off dopamine agonists safely and starting the replacement med - likely gabapentin.

Here's the link.

rlscurbside.org/

[Bloodhound669 in reply to Joolsg]

Thank you for this suggestion. Along with a host of other questions for the V.A. I will include this.

[RLSdaily]

I am reading on old posts, I am curious what the VA did prescribe for you? I also get care at the VA.

[Bloodhound669 in reply to RLSdaily]

Embarrassingly I will admit that my doctor won't back down and prescribe Pregabalin, although, mysteriously she says it IS available, she has me on 100mg. of gabapentin (until I find that it isn't working for me), at which time she will start me on Pregabalin. That was some days ago and I have had no problems. I am not sleepwalking; I am just NOT sleeping much. Understand that I sprained both of my ankles and I have to take Ibuprofen every few hours as of late, so what I say here may become moot soon. So far I find that what Sue Johnson indicates and her suggestions are the way to go. (If your doctor will cooperate).

[RLSdaily]

my Rls goes back to when I was active duty and seeing a neurologist, he tried to be helpful. Years later at the VA started with DAs failed- tried Gabapentin never really helped my RLS just made me drowsy. So I was exhausted and out of it. Left me feeling hungover in the mornings. Tried Pregabalin same outcome. This was after adjusting doses. I am working on getting an opioid prescribed. It takes time for sure to get doctors on board. I have tried everything.

[Bloodhound669 in reply to RLSdaily]

You will get no opioids from the V.A. If you do let me know.