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[Dopa1]

My RLS starts around 1 pm .and I take 1 50/200 Carbidopa which when busy helps . Later around 3 take 1 more . Still busy so ok . Then at 7pm when the body is resting " bam " the legs start . I then take 2 which sometime work but most of the time it takes 3-4 hours .. My concern is not the time as it is my lower back and or kidneys are " killing me " when I try to walk etc . [ I do take potassium for thigh cramps [ no pain can evem come close ] the potasium helps great ] Please help on the lower back pain

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

You are suffering from augmentation. Normally RLS is only at night. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

This means you have to come off it.

Buy an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Carbidopa/levodopa is used for Parkinson's and was never recommended for RLS. . Gabapentin or pregabalin are the first-line treatment Do not let your doctor prescribe ropinirole or pramipexole which are DAs and will also lead to augmentation.

I won't give you the information on gabapentin and pregabalin now because it is going to be a long time until you are off carbidopa/levodopa and you don't need to start it until you are 3 weeks from being off it. Make a new post when that time comes.

Have you had your ferritin checked? If so what was it? If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

You may need to change doctors. Where do you live and who is your doctor. We may be able to give you a name. If in the US give your city and state.

Meanwhile 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, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

I will leave it to others to answer your question about your lower back and kidneys .

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

P.S. It's possible you can reduce sooner than every 2 weeks. If your symptoms have settled you can go to the next reduction. Also the switch from carbidopa to ropinirole should be done by a doctor that treats both Parkinson's and RLS as s/he will know best how to do it.

[SueJohnson]

Forget what I told you before about ropinirole if you saw it. See my revised answer'

[Dopa1 in reply to SueJohnson]

I did not receive your revised answer . I have trie ropinirole and patches and just about eferything under the sun and the only meds that have worked is the dopa. The side effects are sometimes awfuk ie balance , dizzy , and now possible back pain [ real concern ] but I will try and heed you Advice .. location Binghamton NY USA , Male 69 / massive stroke 10 years ago / ELS started 4 years ago . Only when resting / Active no problem Thank you for your thoughts and suggestions as yes I believe I am taking too much and the wait time for it too work is sometimes 3-4 hours. I am working with my stoke surgeon . Any additional help is greatly appreciated

Fred

[Joolsg in reply to Dopa1]

Until you get off levodopa, your RLS will not improve. Pain is associated with RLS and your back pain could be another sign of augmentation. RLS starts earlier, becomes more severe and moves to other body parts, like arms, trunk, back.

[SueJohnson in reply to Dopa1]

You might want to get an appointment with Dr. Taseer Minhas a neurologist in Vestal as he treats both RLS and Parkinson's and might be more knowledgeable in helping you get off Carbidopa /levodopa.

[Dopa1 in reply to SueJohnson]

You are fabulous !! Thank you as I will call him

[Joolsg]

Welcome.Can you complete your profile so we can see more info. Where you are, age, all the meds you're taking .

SueJohnson has given you excellent advice.

Most people join this site because their RLS is worsening on dopaminergic meds. Their doctors usually tell them that is because the disease is progressive and worsens with age. However, if you're taking dopaminergic drugs, your RLS is getting worse because of the meds.

You need to get off them. Your RLS will continue to worsen until you do.

Read ALL you can about Augmentation. Look at Dr Berkowski's website, where he has lots of webcasts and articles on the dangers of dopaminergic drugs.

You are on a drug that hasn't been prescribed for RLS for years, because it has the highest rate of drug-induced worsening ( augmentation).

Sadly, most doctors do not learn about RLS at medical school or during GP/ neurological training.

Follow SueJohnson advice. Get your iron levels tested, slowly reduce the levodopa and read everything you can about RLS. All the posts on augmentation, all the research papers on iron. Read the Mayo Clinic Algorithm on treatment of RLS. The more you know, the more you can direct your doctor.

Do NOT let your doctor prescribe another dopamine agonist ( Ropinirole, Pramipexole, Rotigitone) as they will ALL cause the RLS to worsen again.

[Dopa1 in reply to Joolsg]

Thank you // white male 69 // massive stroke 2013 // current other meds // baby asprin / health excellent // complete 14 page blood study // all results normal .. I do take potasium for sever upper thigh cramps [ irregular basis ] other than that the dopa is works but the " lower back is sore causing me to walk bent over " I really do not want to be taking anything but the condition starts in my brain and then the leg's go nuts . I will hve my iron levels completed this week Thank you

[Joolsg in reply to Dopa1]

Your doctors will say iron results are 'normal', BUT for RLS, serum iron needs to be above 60, serum ferritin above 100, preferably 200 and TSAT below 45%.If your serum ferritin is 15ųg/L that falls within 'normal' range. It's far too low for RLS. Ask for actual numbers. They may be fine, but check the numbers.

I see from your replies that you've been through all the other dopamine agonists. That is a clear sign that you are in augmentation.

Hopefully, you will find a good, knowledgeable doctor who is familiar with the Mayo Clinic Algorithm.

[Dopa1 in reply to Joolsg]

Great " stuff " Thank you .. I will have my blood tested for the above .. Again Thanks

[Wordsworth99 in reply to Dopa1]

Hi Fred, as Sue advised, magnesium helps some people, and considering that you have upper thigh cramps, perhaps magnesium would help alongside the potassium you take? Many, many people are magnesium deficient, and unfortunately blood test results won’t show this.

[Dopa1]

Thank you