Damage to dopamine receptors?

[Invegg]

It's a while since I have posted here but have been checking in constantly. While trying to process the plethora of information here, a question came to mind. Is there qualified proof or evidence that Pramipexole causes permanent damage to your dopamine receptors.

[SueJohnson]

I do not know of any studies per se but the experts including Dr Buchfuhrer all believe this. If one's dopamine receptors are damaged gabapentin and pregabalin won't work and increasing one's ferritin also may not work. There are certainly a number of people on this forum who have been on a DA and found this to be the case.

[Invegg in reply to SueJohnson]

Thanks Sue. Because of the condition(RLS) I'm constantly looking for answers and to get to the root of the problem. Please don't think I am being pedantic but could it be assumed that there is, to date, no known way of measuring the health of dopamine receptors in the brain.To change the subject slightly, I had a recent experience of having done a job involving a lot of stooping and bending on one knee or two. My lower back and hips were in agony by evening. That night my RLS returned with venom even though I was getting relief up to then with pramipexole, pregabalin and tramadol in low doses. It did resolve after a few hours but leaves me thinking that because I have a lot of degenerative disc damage especially in the lower back, could it's return have been caused by aggravated nerves in the lumber/coccyx area. I realise I'm probably clutching at straws!

Your thoughts

[SueJohnson in reply to Invegg]

Yes it is certainly possible.

The health of dopamine receptors in the brain can be indirectly measured using brain imaging techniques like Positron Emission Tomography (PET) and Single Photon Emission Computed Tomography (SPECT)

[MrCrow in reply to SueJohnson]

Have you had these done? Any significant insights?

[SueJohnson in reply to MrCrow]

No

[Munroist]

I not aware of any study which explicitly tested the function of dopamine receptors after long exposure to dopamine agonists but there are a few indicators that damage is done to the supply and regulation of dopamine. Firstly the dose of the DA often has to be increased because it becomes ineffective. This indicates that there have been changes to dopamine system which may or may not be specifically the receptors. Secondly after long exposure to DA’s or augmentation some people report that after withdrawing from the drug, if they go back on it they augment much more quickly which indicates that more lasting damage has been done. Lastly many people who have been on dopamine agonists for a long time or have augmented often find that other drugs such as pregabalin or gabapentin are ineffective which may also indicate that permanent damage has been done. However there are a wide range of reactions to dopamine agonists, some people withdraw and find their RLS goes away, and some find it remains severe so potentially some people are more vulnerable than others. What is more clearly understood is that most people will augment on dopamine agonists over several years resulting in worse RLS and necessitating a difficult and often traumatic withdrawal. In addition a significant number will suffer from side effects such as Impukse Control Disorder. Regarding your back problems, there is a documented relationship between nerve issues and neuropathic pain and RLS. I have lower back/disc problems with a mild form of permanent neuropathy, odd sensations etc. and my RLS does seem to worsen if I aggravate it, although not dramatically.

[SueJohnson in reply to Munroist]

I have never heard of anybody withdrawing from a DA and having their RLS go away unless they did something else to stop it like taking iron or stopping a trigger.

[Munroist in reply to SueJohnson]

I have seen more than one who said their RLS was very much better or almost gone after withdrawal. I didn’t keep the posts but I don’t think I’m imagining it. It does seem odd because if your RLS was negligible then why were you on DA’s to start with? However I didn’t follow it up at the time.

[Itsatom]

What are the implications of damaged dopamine receptors, life-long RLS and depression? I have been off Pramipexole since June of this year and it has been extremely tough to say the least. I'm taking 1/8 strip of Suboxone every night along with 100mg of Pristiq. And 3 weeks ago I started taking Pregabalin (50mg in the morning and 100mg at night). My depression has gotten much better and my RLS seems to be under control with the Suboxone and avoiding triggers. However, I have tried to ween off the Suboxone and the RLS comes back aggressively. And I'm not seeing any effect on the RLS from the Pregabalin (though it seemed to quickly help with the depression). So, I realize all these drugs might be taking care of the symptoms of damaged receptors, and if I got off of them all, then I'd see the effects of damaged receptors. But I would love to think the brain can create new pathways which will naturally take care of some of the symptoms. I hate to think of having to be on all these drugs for the rest of my life.

[707twitcher in reply to Itsatom]

Seems like the underlying issue in this thread is base line RLS when no medications are involved. While augmentation makes RLS worse, maybe stopping DAs brings the RLS back to a calmer base line for some, thus seeming to be a big improvement? In my case, the worse RLS symptoms (involving arms and torso) of augmentation have remained and become a part of my baseline RLS. I stopped DAs a year ago. While Suboxone works great, I do get the occasional flare-up from triggers or if I take an afternoon nap, and that usually means the awful upper body RLS for me. Adding more Suboxone always relieves it, but the base line RLS level is definitely worse than it used to be pre-augmentation.

[Itsatom in reply to 707twitcher]

Thank you, that makes sense. I'm not sure you are saying this exactly, but I'd like to think you're saying dopamine receptor damage implications are more limited to RLS and not necessarily depression. When I was getting off Pramipexole I knew it was going to be tough but I did not anticipate the level of depression.

I'm curious, 707twitcher, do you plan on staying on the Suboxone indefinitely? Have you tried getting off it? I'm hoping the Pregabalin will start working for the RLS so I can eventually get off the Suboxone. It works great and I'm not aware of any side effects, it's just such a hassle to get. But my doctor seems open to me having it long term so maybe he will start giving me more in between visits. At this point I have to go see him every 2/3 weeks.

[707twitcher in reply to Itsatom]

I’ve tried pregabalin and gabapentin a few times without it helping my RLS any. So I assume my dopamine receptors are presumably still damaged.

I would love to come off buprenorphine due to the side effects. I’ve tried dipyridamole, Nidra TOMAC bands, and a few others. But nothing else works for me. So I am resigned to staying on buprenorphine indefinitely.

[CowgirlArtist in reply to 707twitcher]

My neurologist keeps promising me that the Nidra TOMAC bands may in the near future be available in my area. He seemed so positive that it would help. Is he wrong? had anyone had luck with them? I know they are very expensive and that insurance usually won't pay for it.

[707twitcher in reply to CowgirlArtist]

They charge $7500. Medicare covers most. My supplemental insurance covered the rest.

I’ve been using for two months. They work great when RLS symptoms are mild. When symptoms are worse, they don’t do much. I’ve equated their effectiveness for me to taking an extra .1mg of buprenorphine. I normally take .4mg per night. Not worth the lost sleep involved with lowering my buprenorphine dose enough to trigger symptoms in order to use the bands.

A few other people here say they are quite pleased with the results. But I haven’t seen anyone comment who is in my situation: needing to reduce opioid dosage in order to trigger symptoms and trying to find a reduced dosage that doesn’t trigger symptoms so severe that the bands don’t handle them.

[SueJohnson in reply to Itsatom]

As I mentioned above if you have damaged dopamine receptors it means gabapentin and pregabalin might not work and neither might taking iron. That does not mean life long RLS nor depression. And you don't know if that is true in your case since 150 mg is still a low dose of pregabalin. The usual effective dose is 200 to 300 mg per the Mayo Updated algorithm on RLS and 450 is the usual maximum but you can go up to 600 mg.

[Itsatom in reply to SueJohnson]

Thank you, Sue.

[SueJohnson in reply to Itsatom]

You don't need pregabalin both in the morning and the evening since RLS occurs only at night unless you are augmenting on a DA which you are no longer. It is often prescribed that way by a doctor who is not familiar with RLS since pregabalin was originally and still is prescribed for neuropathic pain which is all day. Take all of it 1 to 2 hours before bedtime.

[Itsatom in reply to SueJohnson]

Okay, I will. Thank God I don't get it during the day at all any more.

[Kejimkujik in reply to Itsatom]

Hi there, I weened off pramipexole taking myblast dose in June. I tried gabapentin but struggled badly with the sideaffects and the rls did not respond well to it. I now take .5mg suboxone in two smaller doses of .25mg doses. The first I takbaround 4:30 to 6pm and the second around 9-10 pm. I did tried the whole half dose early eveing but find this works better at keeping rls at bay through the night. I am just emerging from a period of terrible anxiety and depression. It is still there but more manageable. It was suggested I try wellbutrin, but given the mess of chemical balance in the brain did not want to add to the chaos in there. I followed several of the suggestions given me on this site and kept a daily diary of when the anxiety occurred and the depression hit. I still feel both but much much lesser for about 10 days or so. Withdrawal from pramipexole can also cause depression I believe and I used to get quite anxious (and still do) when RLS kicks in. If needed through the day I might take 1/8-1/4 extra suboxone. I find I have to keep my fluid intake up through the day and absolutely reduce sugar content especially refined sugars to a minimum. I could not face cold showers but weather has been cold hear, so went outside a few times in minus temps and just a thin layer of clothing. It certainly jolted my body into a better frame of mind. Anyway, have noticed the suboxone seems to be wearing thin a bit more and rls was breaking ybsleep after just a couple hours. I have taken 1/8 of a tablet extra for a couple nights and now backbto getting a full 6-8 hrs daily with little to no breakthroughs. Just thought to share. If suboxone is the only way to control the rls then will gladly stay on that rather than any DA. It is not a big dose.

[Itsatom]

Thank you, Kejimkujik, that is really helpful. Our cases sound similar. I've been so eager to get off the Suboxone but even my doctor says it is such a small dose that I shouldn't be too worried.