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Restless Legs Syndrome

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Unexplained weight loss: from iron infusions or DA elimination?

rls_optimist profile image
21 Replies

Has anyone experienced unexplained significant weight loss either from eliminating DAs or from getting iron infusions?

I started having unexplained weight loss last Fall. I've gone from 205 lbs to 170 since September 2018 (I may have leveled off now at ~170). I had an iron infusion in August 2018 and another in December 2018. (Both have really helped with RLS.) Then I eliminated all DAs starting in October 2018 and finishing in February 2019.

During this time, I also introduced and gradually increased methadone up to my current level of 15 mg. to replace the dreaded DAs. I've also been taking 1500 mg gabapentin/day this whole time. I'm now blessedly free of all DAs after a hellish withdrawal. This combo of 2 medications, plus the iron infusions, has now produced complete control of my RLS symptoms almost all the time.

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21 Replies
Lapsedrunner profile image
Lapsedrunner

Hi. I just looked back on your posts. 8 months ago you were working on a healthy, Mediterranean diet.

Does your weight loss coincide with this or is it truly unexplained?

Significant unintentional weight loss should be checked out by your doctor in my opinion.

rls_optimist profile image
rls_optimist in reply toLapsedrunner

I may have changed my eating habits more than I realized. But still, 35 lbs is way, way more than I've ever lost by changing my eating habits.

I've checked with my doctors, thanks for your concern. All is well there.

involuntarydancer profile image
involuntarydancer in reply torls_optimist

Wow that's a LOT. Is there anything left of you at all? Do you still feel healthy?

rls_optimist profile image
rls_optimist in reply toinvoluntarydancer

I'm at 170 lbs, which is a healthy weight for a 6'2" male. I do still feel pretty healthy, with good strength for a 70-year-old. Able to walk several miles and do some weight work. Just a little more fatigue at times.

There's one more thing I may look into: thyroid. It's possible my thyroid is overactive.

involuntarydancer profile image
involuntarydancer in reply torls_optimist

I wish you all the best in finding the cause.

I think you need to get a thorough check up with your doctor as Lapsedrunner suggests.

On that much Gabapentin, you should be putting on weight.

Are you having any new symptoms, of any kind?

marsha2306 profile image
marsha2306 in reply to

Agree that 1500 mg Gabapentin would most likely cause weight gain. I personally gained 7 lbs in 3 weeks when I upped dose from 1200 to 1500.

rls_optimist profile image
rls_optimist in reply to

Thanks. Again, I have been checked for medical causes, all clear. Only new symptom is a little more fatigue at times, but it's mild. Generally feeling pretty good.

But you've given me another possible clue: gabapentin. I've been taking gabapentin plus a DA for many years. I just went back and looked at my RLS diary from last Fall and found that back then, before my 2nd iron infusion helped reduce my RLS symptoms some more, i was taking 1800 to 2100 mg gabapentin a day. Now I'm taking 1200/day (I incorrectly reported that as 1500 mg). So now I'm wondering if the decrease in gabapentin might be a contributing factor in the weight loss.

Again, it looks like my weight has stabilized at around 170 lbs, which is a perfectly normal weight for a 6'2" male. But I'd be happier if I knew what caused this weight loss.

in reply torls_optimist

Unexplained weight loss is very worrying, but OK if you've thoroughly checked out medically.

Also if your weight has stabilised.

Your weight is in the healthy range.

Lolly53 profile image
Lolly53

I am currently on 5 mg of Methadone which has blessedly given me a new lease on life because my RLS is 95 percent gone. I have lost 20 pounds. I have attributed it to being able to greatly reduce Lyrica from 300 mg to 75mg, but I have also wondered if the Methadone is partly responsible for my weight loss as my appetite has decreased as well.

in reply toLolly53

Lyrica is an appetite stimulant and can cause weight gain, as you realise. Your weight loss may be in part due to reducing it.

it appears rls optimist is LOSING weight DESPITE taking Gabapentin.You should not expect this.

Additionally, opiates do not directly affect appetite, they can however cause nausea and vomiting and it's this that ruins appetite. If the opiate is NOT causing nausea, then again you would not expect weight loss.

Any unexpected or unexplained weight loss requires medical investigation.

Parminter profile image
Parminter

Methadone.

Take care to keep to a very healthy, super-nutritious diet. No empty calories.

And now try to slowly reduce your methadone. 15mg is unnecessarily high for a maintenance dose.

I started on 15mg, stayed there for only two days, then reduced over a month to 6mg, where I am now steady.

rls_optimist profile image
rls_optimist in reply toParminter

I would love to get by on less methadone. And I have tried to reduce it several times, by small increments, but it is not to be. It's a trade off: I have to increase my gabapentin dose by more than I'm comfortable with (300-600 mg or more) in order to decrease the methadone. My experience is that I have fewer side effects with this combination than if I drop the methadone a little and boost the gabapentin.

I'm glad you're able to get by on 6 mg methadone. Long may it last. Are you taking anything else?

Parminter profile image
Parminter in reply torls_optimist

No, nothing else. For a while I was on methadone occasionally, together with pramipexole.

After an horrific daytime attack I decided to go it alone on methadone.

The methadone worked vastly better alone than in tandem, and did not interfere with sleep at all. I immediately started sleeping through the night.

The point of this is that maybe methadone is a drug best used alone if possible. Or it may be that only dopamine agonists interfere with other drugs. We just don't know. Nor do the doctors or the pharmacists.

Both the DAs and the anticonvulsants mess with the brain in complex ways, and it is reasonable to assume that combinations of mind-benders may make things worse.

When I dropped one the result was gobsmacking. I can still barely believe it, eight months later.

But I am absolutely sure that a combination of a DA and pramipexole would not have been the same at all.

Parminter profile image
Parminter in reply toParminter

And I am sure that the methadone causes weight loss if one is not wary. I am slight and have no extra to lose, so when I starting dropping kilos and my trousers fell off I took great care that it would not continue.

rls_optimist profile image
rls_optimist in reply toParminter

Well, how interesting. That's very inspiring. I may well try something similar, reducing the gabapentin as low as possible, hopefully to zero. I believe it's considered unwise to drop from 1200 mg to 0 all at once, so I'll go down gradually. Then if I get to zero, after a little while I'll see if I can reduce the methadone.

No guarantees, but if I go this route, I'll keep you posted.

Parminter profile image
Parminter in reply torls_optimist

When I took methadone together with pramipexole I did not sleep at all. I was just relatively chilled about it.

On pramipexole alone I slept a teeny-weeny bit, and desperately miserable.

On methadone alone I sleep all night, sometimes for TEN HOURS. (Sorry to shout, but I still cannot believe it, after decades of insomnia. Bliss.).

So, drug interactions can do things we know not of. Pharma-soup with a lot of lumps in it.

I am also pretty sure that pramipexole interfered with my BP meds, reduced the wanted effects and increased the side effects.

After eight months I really cannot find any down-sides to methadone.

The downsides of prami were horrendous.

I agree that significant weight loss is something that should be looked into by a medical practitioner. For what it's worth, I lost quite a bit of weight after I withdrew from pramipexole (once I got my regime under control). I think that the dopamine agonist caused a degree of compulsive eating in me (as well as significant compulsive shopping) and that compulsion fell away when I stopped it - as did the weight! I was on a high dose of pramipexole however - 1.6mg.

rls_optimist profile image
rls_optimist in reply toinvoluntarydancer

Thank you all for your replies. Sorry for my delay in responding. Not to worry: I have certainly seen several doctors and been tested for all the serious possibilities (various cancers, heart issues, celiac disease), all thankfully negative. And I didn't think I'd made enough changes in diet or eating habits to explain the loss. That's why I'm investigating these other possibilities.

However, since you mentioned losing weight after eliminating pramipexole, dancer, I'm now thinking that I may have been doing more compulsive eating before my DA elimination than I realized. One thing I do remember is that I pretty much stopped eating ice cream around that time; there could well have been other changes I didn't remember. Thanks for the tip.

To stress the point, I would ignore any thoughts about whether stopping or starting any drugs causing you to lose weight for now. It may be that, but it's really in your best interest to see your doctor.

rls_optimist profile image
rls_optimist in reply to

Thanks, I've done that. See my response to 'dancer.

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