Fda warning - Gaba and pregabalin.

[Madlegs1]

FDA Alert - FDA Warns About Serious Breathing Problems with Seizure and Nerve Pain Medicines Gabapentin (Neurontin, Gralise, Horizant) and Pregabalin (Lyrica, Lyrica CR) in Patients with Respiratory Risk Factors

[Hidden]

Thanks Madlegs, note taken.

[RoadRunner44]

Such important information. Thanks for sharing. Chrys

[Pippins2]

Hi Madlegs, I have read about this today, it also warns of the dangers of taking Pregablin alongside an opiate. I take both and have Central and Obstructive sleep apnea so this is extremely worrying for me x

[sweetiepye]

Hello Madlegs , I am still trying to get off of ropinirole and the reason it's taking so long is because I have asthma and sleep apnea so taking an opiate is potentially dangerous . I am trying my third one now , which is methadone . My Doctor starts me at the lowest dose and if there are no side effects in a week, increases it by2.5 mg . The methadone is working so far and I'm at my second increase. As soon as I get to a dose that works I will start reducing the ropinirole, very slowly. The slower you go the more successful you seem to be. When I'm off the ropinirole I will start horizant or gabapentin and start reducing the methadone. That's the plan anyway. Any time I increase a dose is a possible trouble spot, also changing a medication depending what it is. My Doctor has prescribed two anti dotes incase of a breathing problem. It is a nasal spray. I have random sleep studies every few months to chart my intake of oxygen. I also have A Fib which complicates matters and my Ep is also in on this. I feel well taken care of and my anxiety is decreasing, but as my doctor says , I don't have any other options. I can e-mail or call my doctor any time and he calls me every time something changes. I am bitter, but trying not to be, about being given ropinirole 20 years ago with no warning of what it could do. Actually, they didn't know what it could do and the FDA passed it anyway. It should be taken off the market or have warnings emblazoned across the package . I hope this information will help someone. Thanks. Pam

[Parminter in reply to sweetiepye]

Sweetiepye, you do not say what your current methadone dose is, but I assume it is 2.5mg X 2?

My own experience may be of interest to you and your doctor.

I first used methadone for frequent breakthroughs after augmenting on pramipexole, and refusing to increase my does further, being aware that I was in very bad trouble. I used 10mg when the breakthroughs occurred.

One day I had a breakthrough so massive, and so distressing (and in the middle of the day) that I swore off pramipexole there and then. It was not advisable, but I was teetering on the edge and very frightened.

I took 15mg methadone that day, 10mg the next, then titrated down to my present dose of 6 mg. I have been on 6mg for 14 months and am symptom-free. I also sleep for eight hours, which I had not done for many years. When I took pramipexole with methadone, or without, I had severe insomnia.

What did become clear to me was that pramipexole interferes with the action of everything else, and that a much lower dose of methadone was needed when pramipexole was absent.

I know that my 'cold turkey' is not the proper course of action, but it demonstrated a number of things to me. And had I not done it, I think I would never have escaped the pramipexole, which is assuredly the drug from hell.

So, the dose that you need in order to escape may be lower than you think, so long as ropinirole is not part of the mix.

[sweetiepye in reply to Parminter]

I wasn't aware of this. If I understand you, when I start to go off the ropinirole I might need to lower the amount of methadone. I will certainly bring it up when I see my doctor. Thank you.

[Parminter in reply to sweetiepye]

Sorry if my point is not clear, Sweetiepye. Let me try to clarify -

When I took pramipexole I had to take 10mg methadone to clear the breakthroughs of augmentation in the middle of the night. My insomnia, if possible, was even worse, I did not sleep at all, but it stopped the misery of the awful limbs. The additional 10mg methadone did not get me through the day, and I could never have a nap in the afternoon because the legs and arms would kick in immediately - while I was on pramipexole.

I stopped pramipexole overnight after the daytime attack, out of sheer terror. Not wise, according to orthodoxy, but I would not let another grain of pramipexole pass my lips again, not after a decade of misery. (I, like you, retain bitterness and anger against an ignorant and careless system that allowed so many of us to suffer so much on this dangerous drug).

But now the methadone gives me 24 - 26 hour cover and I can take a nap in the afternoon, which is a great luxury.

It is quite possible that on the first two nights of withrawal I did NOT need 15mg of methadone. I very rapidly reduced to 8mg for a week or so, then pushed down to 5mg, which was too little, then up to 6mg, where I have been ever since. This whole process took two weeks. I did not taper the DA, and according to Doctor Buchfuhrer this is just fine. (He does not taper his patients).

I had no 'withdrawal' to speak of. I felt somewhat nauseous in the mornings, and I was itchy, and I felt a little bit odd. That's it. And these symptoms could be the side effects of methadone. They did not last long.

So what I am trying to say is that, while on pramipexole, a fairly large dose of methadone worked reasonably well for a short while. But as soon as the pramipexole was gone, the methadone worked extremely well with a much decreased dose, and for an extended period.

I am suggesting that this process may be easier than you think, and maybe a prolonged taper is not necessary. And if methadone is okay for you in small doses, it will still be there in the future if needed, as a stop-gap, after you get on to gabapentin. All will be well!

Dopamine agonists mess everything up - they are immensely powerful drugs. And I believe they interfere profoundly with the action of other drugs that work in the brain - this is certainly my experience.

[sweetiepye in reply to Parminter]

I get it and it's good to hear. I have suffered so much and I'm not sure I can go through any more. The lack of sleep contributes to this hopelessness. My doctor studied under doctor buckfuhrer and he's going to be speaking at Stanford this coming summer. The number of doctors who understand RLS and how it should be treated is very small for a country this size and the number of medical facilities we have. It is wonderful that you share your knowledge on site. So many have no one to help them.

[Parminter in reply to sweetiepye]

I hear you, Sweetiepye.

I was close to suicide when I took the leap to methadone.

It only took 24 hours to turn it around, that's all. From the first day, when I took 15mg methadone, I was symptom-free and I slept. The same night.

I did not know it would be so miraculous, I just hoped to be a little better.

[sweetiepye in reply to Parminter]

That is wonderful to hear and I wish everyone could have that experience.

[Parminter in reply to sweetiepye]

I wish you well, too, Sweetiepye.

I cannot bear to think of all the people suffering unnecessarily.

Every day when I open up HealthUnlocked and read the statement of yet another patient bumping into brick walls of ignorance I feel despair.

If you scroll through all the other sections in HealthUnlocked, on all the other health conditions, you will find nothing like it.

Only we have to fight our way, inch by agonising inch, to get help. And many never get it, not really.

[sweetiepye in reply to Parminter]

We need a voice.

[Joolsg]

Thanks Madlegs. Frightening for those of us taking both gabapentinoids and opioids. I will try to dig deeper to see whether the doses involved were higher than the usual low doses taken by those of us with RLS.

[Sampsie]

I take both. I might be getting ahead if myself but what happens if the FDA ban these and the UK follow? There's no alternative if you don't want to take anti dopamine antagonists. I certainly couldn't go back to nothing again, I just couldn't do it. I have both asthma and dysfunctional breathing so possibly someone a GP would take off Gabapentin. Worried.

[sweetiepye in reply to Sampsie]

I would like to say it couldn't happen , but after this opiate crises I could see it happening with Neurontin. Why is there this push for dopamine agonists ?

[Heatherlss]

Well that just added my anxiety levels. But if we don't take them, what else can we take for our RLS ?

[Amrob]

Thanks Madlegs. That's very concerning. I regularly take 300mg pregabalin with clonazepam (a CNS depressant) and on a couple of occasions recently pregabalin with a low dose of targin (an opioid). For me, it's difficult to properly assess the risk though as I'm in fair health, not elderly and take moderate(?) doses of pregabalin. It does seem as though my options are constricting!

[burri8]

I have taken Lyrica for five years and have Obstructive Sleep Apnea but I have not have had any side effects as mentioned. Every once in a while I use an inhaler for my asthma but it isn't because of the Lyrica I take. I had this problem prior to taking Lyrica.

[Pippins2]

Having read the article in full (i had to register could only see part of it yesterday ) it mentions abuse of Gabapentin (and Pregablin ) which i dont do plus i use a Bipap so i am not so worried today

Pipps x

[Tipti]

Two or three years ago I used pregablin & gabapentin for RLS neither of which helped. Prameprexole was then prescribed but the symptoms got worse. Now, prescribed by a neurologist, I take 2mg Roprinirole slow release in the afternoon & 500 micro gram Clonazepam mid evening & it’s worked really well though still occasional RLS especially if I do too much exercise. But no more insanity. Tipti

[tryit in reply to Tipti]

8 years RLS and counting, .5MG of Klonopin worked OK until a year ago, then started bumming-me-out the next day, Nuro switched me to Gabapentin. She cautioned not to take over 900MG /day. with some magnesium. The secret is to get out in front of it and stay active during the day. The kicker for me is 5 or 10 minutes on the tred-mill., walking at 3mi per hr, or running at 4mph.

[Madlegs1 in reply to tryit]

Do NOT combine Gaba and magnesium. Keep at least 2 hrs apart.