Pregabalin

[gobojo]

Has anyone had any experience of pregabalin becoming less effective? I was taking the maximum dose of 450 mg but I started to have breakthrough symptoms. I went to the GP who appeared horrified that I was taking Pregabalin. She said I must reduce it until I was not taking anymore and at the same time start taking ropinirole. I'm really unhappy with this as I read so many posts about people having to wean themselves off ropinirole. I live in the UK. I'm so tired of GPs not having the right up-to-date knowledge, or even any knowledge and not listening. I'm thinking my only choice is to get a private appointment. I live in Dorking, Surrey. Does anyone know of someone I could see?

[SueJohnson]

Although 450 is considered the maximum you can actually increase it up to 600 mg. It is a little concerning that you needed 6 months ago to increase it from 225 mg. And then 3 years ago you were on 300 mg. and saying it wasn't working so well. You have been all over the map. I saw there were a couple of suggestions then 1) to split the doses and 2) to reduce slowly and then go back up. Have you tried these?

Have you changed anything? Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

The other possibility is to add a low dose opioid.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[gobojo in reply to SueJohnson]

Thank you for your support and advice Sue.

[SueJohnson]

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[gobojo in reply to SueJohnson]

I haven't ever had it checked despite mentioning it several times. I need to be more assertive!

[SueJohnson in reply to gobojo]

Print out the portion of the Mayo Clinic Updated Algorithm on RLS which is the bible for treating RLS and says the first thing that should be done is to check your ferritin at Https://mayoclinicproceedings.org/a...

[gobojo in reply to SueJohnson]

Thank you for everything you do to help the people on this forum Sue. I would feel so alone without it. I have the updated Mayo Clinic algorithm and I intend to ask my GP to read it before my next appointment

[Theonlypetied]

I have had a similar experience. My effective dose was 350mg. That was until 13th January when my legs started going ballistic around 30-60 mins after going to bed. I have only had 1 decent night of sleep since then.

[ChrisColumbus]

You do not want to go onto a dopamine agonist - ropinirole, pramipexole or rotigotine: it's not their fault, your GP has not been taught about RLS and is following out-of-date NICE/NHS guidelines. Unfortunately this is the case with most UK GPs and neurologists.

Sue has given you guidance about your current regime, having an iron test, and has asked whether you're taking any OTC or prescribed medications which could exacerbate RLS.

Beyond that, please read this pinned post about low dose opioids to possibly discuss with your GP:

healthunlocked.com/rlsuk/po...

[gobojo in reply to ChrisColumbus]

Thank you so much for this helpful advice.

[Munroist]

Pregabalin is a strong drug and ideally you wouldn't be taking it but it's nothing to be horrified about. I took it for a year with only very slight side effects and felt pretty normal. You certainly don't want to start on a dopamine agonist which is likely to have much worse side effects in the longer run followed by an extremely unpleasant withdrawal for many people.

[gobojo in reply to Munroist]

From what I read on this forum, ropinirole is far worse. I just wish the GPs could read all the posts on this forum!!

[Amrob]

You're already on a high dose of pregabalin. I wouldn't recommend going higher as side effects only increase.

In my experience, people who don't take pregabalin don't always fully appreciate how unpleasant the side effects can be.

Have you considered supplementing tge pregabalin with a low dose of clonazepam or clonidine? Sometimes two medications at a lower dose can be more effective than a single drug at a high dose.

[milly-22]

Absolutely do not start taking Ropinirole. Read all that Sue Johnson has to say about this. Print it out and go and see your Doctor again because she obviously doesn’t know what she’s talking about. It took me 8 months to come off Ropinirole as it caused such bad augmentation. Most nights I only managed about 2 hours sleep and had to stay on my feet constantly. I thank heaven for this forum and Sue’s help as I am now virtually free of RLS and just take a small amount of pregabalin at night. If your GP won’t listen to you change GP’s. DO TAKE HEED OF WHAT SUE SAYS. Good luck.

[gobojo]

Thank you, I am going to my next appointment armed with all the evidence and advice I can muster.

[gobojo]

Thanks for the advice

[Marmot2]

morning gobojo

I fully understand as I’ve had same response from my gp. I live in Bromley (used to live in dorking). I copied the info that Sue gave me and passed it onto my gp with little success other than referring to the meds that are described were ok and that I was on them so should be ok! Well I’m not. He referred me to Queens in London who are the main people for rls and other neurological problems. Forget neurologists that are local as they seem to be more into Parkinson’s. Made a point of ferritin check and argued for it but came back around 208-10 which is ok so at a loss. Sue is brilliant and a great support. I’m on 400 pregabalin, 1 oxycodone + cocodamol. But this is for fibromyalgia and osteoarthritis and for me doesn’t kick in for rls. Had huge augmentation with Ropinirole, no one told me about augmentation. So so bad and relented onto rotigotine 1mg after weaning off Ropinirole. I know it’s not recommended but no sleep for weeks on end but for me it’s 99% sorted so far but when you’re at your lowest with no nhs help I was desperate. Also tried hylands from Amazon but didn’t work for me.

I may regret being on rotigotine but am in a really bad place. Suggest you mention queens In London for a referral. They are the top guns on this for nhs help. Fully understand where ur coming from and more than frustrating talking to gp who doesn’t understand. Argue what you want from gp. All the best

[gobojo in reply to Marmot2]

Thank you so much for your reply. I may have to relent and try rotigotine. I read a paper which said that if you use the rotigotine patch there is less chance of augmentation.

All the best to you and thanks for your recommendation of Queens in London, really helpful.

[Marmot2 in reply to gobojo]

Do persist with gp. While I was at doctors this morning a lady heard my conversation with receptionist (who was struggling what rls was !) and recommended queens big time as she went there and got help. Amazing how patients help one another 😊. I know we’re all different.

[gobojo in reply to Marmot2]

Sometimes you feel so alone with it, it's so good to be able to reach out to others.

[SueJohnson in reply to gobojo]

There is less chance of augmentation but it is harder to come off of. (Did I already tell you this?)

[Marmot2]

absolutely. Hope you get help soon

[gobojo in reply to Marmot2]

Thank you x