How can I wean off 1 mg Neupro patch that I have used daily for years? I have severe RLS in my whole body 24/7 and also take 500 mg pregabalin daily ( spread out 2 1 2) and tramadol before bed.
I was just diagnosed with hyperparathyroidism and adrenal adenoma and wonder if I can expect any improvement in my RLS symptoms post parathroid and adrenal gland removal.
You are suffering Augmentation and need to get of the patch.
Slowly and by very small bits. There is plenty of advice on how to do this on this site.
I have no knowledge on the rest of your diagnosis, but I'm sure someone else will have suggestions.
Good luck.
I have given you this advice before but I guess you weren't ready or convinced you needed to do it so here it is again.
Sinve you are suffering now I recommend you increase your dose by cutting it into sixths and using an extra 1/6 strip to increase your dose until your symptoms settle.
You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your tramadol temporarily to help out with the symptoms especially as you near the end. . But in the long run, you will be glad you came off it.
Thank you Sue. I don’t think the beginning of that post was for me since I have never asked for nor gotten any advice from this group before. It’s all very helpful. I plan to start weaning off once I get the right dr - I am starting to make phone calls tomorrow. I have the names from the RLS foundation website but anyone have recs for a great RLS dr in NYC or on Long Island?
Joolsg gave you that advice and I agreed with her so I didn't literally give you that advice. healthunlocked.com/rlsuk/po...
That's great you will start weaning off it. It won't be easy but we are all here for you.❤️
The surgery is not likely to help your RLS much.
Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea.
You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. They have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS" Another idea is to have your doctor write a note that you carry with you and can show to the hospital about your condition and that you need your medicine.
And make sure your ferritin is high as surgery can cause blood loss making your ferritin go down. Did you ever have it checked? If so what was it?
Also after your surgery you need to withdraw slowly from any opioids they gave you. You will have inflammation from the surgery which will make your RLS worse but it will go away.
How does one join the RLS foundation to be able to access the link you provided?
go to rls.org
Thanks. For some reason it wasn’t working before. I’m in now 👍
Thank you Sue . I’m already a member of the foundation and will look for the card and the guide. I have checked my ferritin regularly- currently it is at 358. In October, it was 417 and in September 499. Since it is an inflammatory marker my hematologist has been quite concerned as to the source of the inflammation to have numbers this high. My iron saturation TIBC has been 245 in September 225 in October and 234 in November.
I am a little surprised he said this as ferritin values up to 1000 as not too high. Mine is over 600. Inflammation can cause ferritin to rise however TIBC increases with inflammation and your is on the lower side of normal.
Thanks Sue.
The severe RLS is caused by the Neupro patch. I see you've been on it for years and your doctor doesn't realise that Neupro has an iatrogenic effect. Dopaminergic drugs are the ONLY drugs that actually worsen the disease they're supposed to treat.Experts now relegate ALL Dopaminergic drugs to end of life scenarios where short term benefits outweigh inevitable long term severe worsening.
The 500 mg and tramadol have been a complete waste of time and money. No drugs can prevent D1 dopamine receptors becominf up regulated and screaming out for their dopamine 'hit'.
Follow SueJohnson advice to see a NY expert.
They will help get you off Neupro.
Many of us were in your situation.
When I joined this site in 2016 I was taking 4mg Ropinirole and had severe all over body 24/7 RLS. My doctors in the UK knew zero and couldn't help.
I went through withdrawal.
It is brutal. You will think you can't make it. But stay strong , in the knowledge that your RLS will improve so much once you are off the poison.
I am completely RLS free 24/7 & sleep 8 hour's a night.
So do many others.
As Dr Buchfuhrer says, 95-98% of RLS patients can be RLS free with the RIGHT doctor using the RIGHT tools.
Good luck.
Thanks so much Joolsg.
I just stopped using it and switched to Methadone with no problems.
Thank you. I believe Methadone may be next for me as well.
Hi, I was diagnosed with hyperthyroidism years ago and was treated with radioactive iodine. I also had (but didn't know what it was at the time) total body RLS. I can't say the RLS was significantly improved after treatment except maybe it was restricted to my legs. It was years later that I was actually told it was RLS and treated with multiple meds. Ropinerole was the best until it augmented and it was terrible. Finally a new GP put me on Hydrocodone which has worked pretty well. I took it while I weaned off Ropinerole (a little more quickly than recommended) and did not have a bad time weaning off. For the 1st time in as long a I can remember, I slept easily and soundly with no RLS. After 2 months on hydrocodone (and diazepam for sleep) I'm not sleeping thru the night but so far it's doing pretty well for my RLS. Hoping it's not going to augment it that my body doesn't get too used to it to work because it's been a blessing.
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