RLS / DAs and lack of appetite

[Boldgirl45]

Hi everyone. I really thought I'd already posted this but had no answers and can't find the post so I have to assume it was a technical blip

Three questions related to my mum who is struggling - more I think from the effect of a lovely combination of Ropinrole and Mirapex than the RLS itself

1) has anyone noticed a lack of appetite associated with either the illness or the drugs? I noticed my mum has been withdrawing more and more and the last time I saw her I noticed she's eating teeny tiny amounts

2) is there anyone of an elderly age who has come off DAs? My mum is 77 (nearly 78). I have thought for a long time about getting her off the drugs and had some amazing advice from some of the key members on here (I still have your messages, thank you!). I chickened out however as am just not sure she will handle it as she seems to be getting frailer. But it's got to the point now that I'm not sure we have any choice. If there's anyone out there of a similar age who's managed it I'd be delighted to hear from them that it's possible.

3) would you recommend shifting from DAs to Gabapentin?

Thanks all,

Clare

[Elffindoe]

I think your primary concern is your mum not eating!

I doubt this in anything to do with RLS or the drugs.

She needs to be seen by a doctor!

The DAs depend on how her RLS is. It seems ridiculous to be on 2 of them! The combined dose may be excessive. However I don't think this a priority

[Boldgirl45 in reply to Elffindoe]

Thanks Elffindoe. She's just eating little - not exactly nothing, but I do share your concern. Thank you.

[Elffindoe in reply to Boldgirl45]

Poor appetite and withdrawal could be depression.

Slow speech and movements are other signs.

If she is on both pramipexole and ropinirole and still has symptoms, she is probably suffering augmentation.

What are the doses?

Is she taking other medications, of so, what?

[Boldgirl45 in reply to Elffindoe]

I think Statins, and some drug for inhibiting acid reflux. I think both of these are not good for RLS?

[Madlegs1]

Sorry about your situation.Usually appetite on those meds is the opposite- people complaining about putting on weight.

I would be slow to attempt change of meds at that age ( I'm 74) unless for a very good reason. Is the rls being controlled?

I see Elfindoe has sneaked in while I'm typing- I agree with him!

Good luck.

Ps-- I know as I get older, I eat less. Not moving around as much.??

[Boldgirl45 in reply to Madlegs1]

Yes could just be some of that - her needs are not as much re: eating. I think there is very good reason to come off the drugs. She still has terrible restless legs and just seems 'doped up' / out of it. She's lost all personality over the last few years. I think she's over medicated. Of course it could be dementia / alzeimers. She's certainly started to get confused. Doctor worse than useless, sadly. But mum thinks she's a saint of course. I will try to go in with her - I live in another country which doesn't help! Thanks a lot for your response.

[Eryl in reply to Boldgirl45]

RLS is often caused by inflammation of the nerves which comes from having high blood sugar (glucose), and can often be eliminated with a rigorous low carb diet. Dementia is also caused by a disregulation of blood sugar and can be halted if not reversed with the aid of a ketognic diet (ultra low carb). youtu.be/AgCUcPX77Lo(Not working as expected?)

[Memmy in reply to Eryl]

I think my rls could be sugar related. My glucosamine levels are good but the sugar is always very slightly over the normal limit. My doctor says it's ok but I know the only sugar I eat is in fruit.

[Eryl in reply to Memmy]

Blood sugar also comes from starchy food like bread and cakes.

[Boldgirl45 in reply to Eryl]

Thanks Eryl - I think it's also you who have written about anti-inflammatory diets before? It's all interesting stuff and I appreciate it, thanks. If you have any other resources, plus your own experience, I'd be happy to hear them.

[Eryl in reply to Boldgirl45]

Yes Ihave writen about inflammation before. It's an often overlooked cause of most nerve related problems including anxiety and depression. I have completely eliminated my RLS by following a strict anti inflammatory diet.

[Boldgirl45 in reply to Eryl]

Eryl that is so great to hear. I suspect inflammatory foods are behind a lot of today’s woes. Would you mind sharing your diet if it’s not too much to ask? Thanks.

[Eryl in reply to Boldgirl45]

Basically it's low carb with no processed foods (especially refined wheat - hence no bread, cakes or biscuits) as little refined seed oil as i can get (only shallow frying with coconut oil) with a lot of leafy green veg for the high nutrient content and oily fish two or three times a week.

[Boldgirl45 in reply to Eryl]

Fantastic - really appreciate your response. I think this will really help my mum's arthritis too. Fingers crossed! I am going to just write out some super simple things to make I think. If you know of any resources for super simple meals that tick the box, do let me know! Thanks again.

[Hidden in reply to Boldgirl45]

Eryl is my dietitian.

[Boldgirl45 in reply to Hidden]

Actually ? Or you're just taking the advice from the here

[Hidden in reply to Boldgirl45]

I follow whatever Eryl says on here. I should retain him as my personal dietitian, shouldn't I.

[Jules1953]

Hello, I am 68 yrs of age and have suffered with RLS for 50 yrs. From 2010 till 2020 I was taking Sifrol (Pramipexole) medication for my RLS. Pramipexole is a dopamine agonist medication. Over those 10 years I put on 30klgs of weight, developed a shopping addiction and suffered with anxiety and depression. I am wondering why your mother is taking two different types of dopamine agonist medications. And I would be very concerned that she is loosing her appetite. Could this be related to another medical issue?

Is your mother getting any sleep?

Is the medication she is taking actually controlling her RLS?

Two years ago I started slowly weaning off the Sifrol medication as it was no longer keeping my RLS at bay. In fact it was making things worse. I would never ever take a dopamine agonist medication again.

To come off a dopamine agonist medication, it must be done ever so slowly. In the last few months of reducing my Sifrol intake I used Endone 5mg (oxycodone) each evening to help me with the withdrawal symptoms. I was fortunate enough at this point to hear about Temgesic, which is micro dosages of Buprenorphine.

I am doing well at present with regards my RLS as I am using Temgesic sublingual 200mcg tablets to successfully control the symptoms. I place two Temgesic tablets under my tongue 30mins before going to bed each night. The Temgesic sublingual 200mcg tablets have been a life saver for me. My RLS are no longer a big issue for me.

Please be aware that it takes months after weaning off dopamine agonist medication for the brain to adjust and recover from the effects of this medication. Best wishes to your mother, from Julie in Western Australia.

[Irmajs in reply to Jules1953]

I had the same symptoms as you from Ropinirole (DA). Plus augmentation. The bad part is you don’t really realize you have a compulsive disorder and depression until the augmentation sets in and forces you off the drug. After I was completely off I not only had my RLS return to a normal evening and night event (instead of 24/7), my mind returned to reality and my shopping disorder and depression disappeared. The more I got depressed, the more I spent. There are stories out there of people loosing everything from DAs. Sorry for the soapbox. Your post hit a nerve and if we can keep people off of DAs or help them get off of them, then it’s worth it. Oh, also I gained weight on Ropinirole. I I’m 72 and now control my RLS with CBD.

[Boldgirl45 in reply to Irmajs]

Thanks Irmajs - your story and others like it give me hope that we can get her on the right path. Would you mind sharing more about the CBD you use? Thank you!

[Irmajs in reply to Boldgirl45]

Sure. The main thing about CBD is there are a lot of inferior products. So you need to get it from a reputable company that has a third party test their products for purity. If she wants to try it, She needs to start off with a low dose and work up to what helps. Everyone is different. I personally order mine from Lazarus Naturals online. I use the capsules because it’s easier to know how much is being taken. With oil drops it is hard to regulate for me. They have a 25 mg relaxation capsule and 25 mg oil capsules. Wait a few days between increases. I now take 2 relaxation capsules and one oil capsule (75mg total) 2 hrs before bed. She also should not take any prescription meds at the same time as Cbd can lessen it’s potency. One hour before or after is okay. Not sure where you live. They do give a 60% discount for veterans. What I like is that I’ve had no side effects and RLS. Hope this helps.

[Boldgirl45 in reply to Jules1953]

Jules1953 thank you for this. No, I fear the two different drugs are not controlling the RLS, that's the sad thing. So augmentation I presume? I think the reason she is on the second DA is because the first stopped working. Doc clearly not aware of the damage these drugs are doing :-(. Temgesic - I don't suppose you would know if that's available in the UK? I'm presuming not as I've heard Buprenorphine is so hard to get! Thanks again for the response.

[SueJohnson]

I am 81 and came off ropinirole of 4 mg this past year. Definitely start gabapentin although it won't help much until she has been off the dopamine medications for a few weeks. The reason to start the gabapentin is it takes at least 3 weeks to be effective. On the ropinirole reduce it by .25 every 2 weeks.

[Boldgirl45 in reply to SueJohnson]

SueJohnson, thank you very much for this. And well done to you, I was hoping to read something like this as you are of a similar age. Was it awful to come off? So you started Gabapentin before starting to come off the others? I think I would only do that once we've come off the ropinrole first, THEN look to do that before coming off Mirapex. I worry my poor mum will be completely over medicated. What a road ahead!

[SueJohnson in reply to Boldgirl45]

I was lucky. I didn't have any problems coming off it.

[SueJohnson in reply to Boldgirl45]

However it took forever and of course I had my usual restless legs throughout. Each of us is different but I found the following stopped my restless legs so I could go back to sleep for a few more hours: I do the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl.... In addition, I walk for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walk. It works every time although I may wake up later at night and have to do again. Actually on the calf stretch I don't hold it for 20 seconds, but instead do the exercise for 20 - 30 times. I also push my heel back before I lean forward. I, also move my leg to each side when it is stretched. On the thigh stretch, I only hold it for a few seconds, but then repeat 6 - 10 times. Hope this helps.

[Boldgirl45 in reply to SueJohnson]

Brilliant Sue, thanks very much!

[jilk in reply to SueJohnson]

thank you i was not doing this long enough

[Beckonwood]

I took Mirapex for over ten years and found that over time I needed to take more and more for it to control my symptoms. I am 79 and now take oxycodone in small amounts as it seems to control the symptoms. Last week I started trying Horizant but am not sure about it yet. The only reason I want to switch is starting around 5pm I start taking a half a pill of oxycodone until eleven oclock at night. It is a pain to be sure I take each half pill on the hour and thought if I could take one pill during the day that would be great. My biggest problem so far with Horizant is it makes me incredibly sleepy and even nodded off at the dining room table with company present. I take some oxycodone along with it but not as much. I go to a pain management center as my doctor felt uncomfortable in giving me the prescriptions for oxycodone. I get the 5 mg. pills and then cut them in half and take three during the evening. They do help. At times I get up during the evening and then take another half as I can have break thru symptoms. The Mirapex I found cause me to gain weight. It seems people respond differently to the medications.

[Irmajs in reply to Beckonwood]

The Horizant is a time release Gabapentine and the longer you take it the drowsiness should lessen. I hope you are taking it about 2 hrs before bed. Also you didn’t mention the dosage you are on. When I was taking a different brand I was taking 900 mg (3 capsules). You may be able to cut your dosage and still control your RLS. It worked for me but my insurance didn’t cover it so I couldn’t afford it. Now use CBD and very happy with it.

[Beckonwood in reply to Irmajs]

I take 600 mg per pill. I did start taking it about 3pm. But will go to taking it around 9pm as I go to bed around 930 but don't turn the lights off until 11:00 pm. I wish it was just my legs that bother me, but I get it in my body as well as my hands and arms. When its in my legs I can stand but there is nothing I can do when I get it in my arms.

[Irmajs in reply to Beckonwood]

I’m so sorry. Yes, when I don’t take anything for my RLS, it starts in my legs and moves up my body becoming more and more intense to the point that I have trouble breathing. Getting up and walking as soon as it starts in my legs usually stops it. Around and around the kitchen island I go. I no longer have (95% of the time) those events as long as I take my CBD 2 hrs before bed. Good luck.

[Boldgirl45 in reply to Irmajs]

Thank you both for your input. What a condition this is

[Memmy in reply to Irmajs]

Hi Irmajs. Glad to hear you are doing so well. How much CBD oil do you take in drops. I'm going to try it

[Irmajs in reply to Memmy]

Please see my first response (closer to top) to Boldgirl45. I didn’t like trying to control amount with drops. If you need more info after reading my above post. Let me know.

[Mulle74]

Hi,I'm on Ropinerole for RLS and Topamax for migraine and has lost 3 stone in the last year. It definitely has an impact on your appetite, I only eat small amounts and have gone off loads of food, especially meat. Hope your mom is ok.

[Boldgirl45 in reply to Mulle74]

Thanks Mulle74, that's interesting thank you. I was wondering if there was any connection at all so it's good to hear your experience.

[Memmy]

Hi Clare, I'm 72 and I have been off DA's for nearly a month. It hasn't been easy but tramadol has helped a lot. I hope your mum manages it. I've had rls for around 40 years and have taken DA's for about 10 years but always a very small dose. Good luck

[Boldgirl45 in reply to Memmy]

Thanks Memmy - really appreciate that. Was it you who was swapping to Gabapentin? Is it starting to kick in yet?

[Memmy in reply to Boldgirl45]

I was taking gabapentin and increasing it but felt I was taking so many pills so I have switched to pregabalin because they have told me that 200 mgs pregabalin is equal to 1200mg gabapentin (I hope I have that right)Please tell me if I'm wrong.) So now I'm on pregabalin and I'm up to 300mgs In the day I feel great with NO symptoms at all. When I go to bed it starts but not as bad as before. I take either 50mg tramadol or 30mgs codeine and half an ambien. I sleep like a baby for 8 to 9 hours. I will try every day not to take the opioids but it's not 3 weeks yet so I'm very hopeful