Pregabalin and ropinirole

[tweedy66]

Would like to know if anyone has any advice for me.....been on 2mg ropinirole along with 300mg pregabalin for about 2 years. I was able to see Dr Winkleman at Mass General 2 years ago when I was on 6 mg. of ropinirole . Never totally got off of it . I also experienced augmentation when on the 6mg.....not a good time as I had just had my second hip replacement . So lately RLS is "creeping "up on me. I can't get to Boston plus it takes months to get an appointment with Dr Winkleman. I suppose I could call....it's just that it has been so long since I was there. Appreciate any feedback!

[Joolsg]

You can just taper off Ropinirole without waiting to see Dr. Winkleman.

Reduce by 0.25mg every 14 days and if the RLS flares up,ask your GP/Primary Care Doc to prescribe Tramadol 50mg to take at least twice a night.

Also ensure you raise serum ferritin above 100, preferably 200.

If you can get cannabis - it really helps with sleep during the withdrawal.

You could also email Dr W & ask if he would recommend switching you to low dose Buprenorphine or Temgesic as many people have managed to switch to these without suffering withdrawal from Ropinirole and pregabalin.

[tweedy66 in reply to Joolsg]

Thank you Joolsgm...I haven't been active for awhile but I certainly recognize your name and you always have good advice. Yes....you're absolutely right....email will be going out soon. I already have a medical marijuana card and the weed certainly does help! I had my iron levels checked awhile back but should redo.I'm 68 and way past menopause but recently having hot flashes....is there any relationship between RLS and changes in hormones ? Thanks again Joolsg!

[Joolsg in reply to tweedy66]

Hi Tweedy,

There is definitely a link with hormones- most women seem to develop RLS during pregnancy & the theory is that oestrogen &or progesterone are culprits. Low iron is also a suspect during pregnancy.

There are some people who find HRT worsens their RLS, others find it improves their RLS.

I wish you luck in slowly reducing the Ropinirole- once off it, you can see whether pregabalin alone ( with cannabis to aid sleep) controls your RLS. If not, you can ask Dr Winkleman to switch you to Buprenorphine (he talks about it being very effective so would definitely prescribe it).

Have a look at posts by Shumbah- she’s had excellent results on Buprenorphine and her reports about it have been used by several other members in Australia and the UK to persuade their doctors to give them Buprenorphine or Temgesic. The results seem to be fantastic.

[RLSofManyYears]

Hi, I was on 3-4mg Ropinirole and 300mg Pregabalin for quite a while but suffered terribly from augmentation. I reduced the Ropinirole to zero and went on to Pramipexole (lowest dose) for a few months but I've reduced that to zero as well. After a hiatus trying codeine with the Pregabalin, for the last three weeks I've been on 200mcg Temgesic as well as the 300mg Pregabalin. I now sleep at night and generally have no RLS symptoms.I plan to try reducing the Pregabalin once I've had at least 4 weeks of success with Temgesic.

[tweedy66 in reply to RLSofManyYears]

Thanks for your reply....good to see what others are trying who have this relentless condi3!

[tweedy66 in reply to tweedy66]

I meant condition 🙄

[bill54321]

Yes I have experience. First, I am a retired Physical Therapist and am Knowledgeab;e in Restless Leg sydrome . Not the thinking about it at night time. Mine is real 48 hrs a day. Jerks 2 feet high. Second, you must chech at least verbally overthe phone if you alter his RX. But given that. I am awake and moving from 8:00 A.M until noon. I take one Rop.2mg and a trammadol 50 mg at 12:00. This prevents the RLS that come with DOZING OFF after noon. I repeat this at 5:00 because I get drosy after eving meal.At 9:00Pm, I take 2mg of Rop., 2 of the Gabipentin300 CAPSULES( for healing nerves and seizures) and 1 trammadol. If I miss any of these, I jerk until I get up and change my arousal level. IT IS NOT FATIGUE< BUT AROUSAL LEVELS THAT CAUSE MY JERK> AND THEY HURT.. So, everyone seems to have a combination that works for them. You are never free. RLS will increse with age and you must not change day by day or you mistake increases to augmentation when it is your lack of schedule. However, I am in a 90 yr. old body but I stay ACTIVE. Walk everey day, even if back and forthin the house with a walker. Use and over the door arm pilley. Use saddle weights to extend your legs sitting. Crushes supine. But best of all, when warm out, use ab UP_Walker to go 6 blocks. (I do on dirt road) Do not fully sleep during day. Instead, no food or liquids past 5:00PM. Eat nuts and blueberries in your cereal 2[)) inmicrowave. Noon meals on wheels. Evening with meat red of tstosterone and mid day cottage cheese, flaxseed and yogurt blended with a teaspoon of BRAGGS vinegerwith mother in it. Use one teasppon of honey with ground garlic.(g00gle) You don't want lung, kidney or liver problems, so only i fast food a month. No smoking. ! glass only of red wine at night (NO<NO<NO caffien-coffee) after noon. Do at nite, watch out for jerk. There you go. Live like solomon and Job and Me or,.......