Drug free and waiting for neurologist

[Pam34]

It has been 2 months now since I managed to wean myself off the ropinirole and then tramadol so I could be drug free when I finally see the neurologist on the 1st October (a 7mth wait!)

I didn't expect it would be easy and at first it certainly wasn't. However I thought it would be a good idea to use this time to introduce magnesium and iron. I take 3 tablets of ferrous sulphate through the day (my last blood test showed my ferritin levels had increased to 79) and in the evening I take 300mg of magnesium malate. To help me over the initial bad nights with RLS I take 2 tramadol every 3 nights to ensure I get some break from the legs. I also use Cleo Active compressions pads on my legs every day.

I really didn't expect to have much success but for the past 10 days something is working. I go to bed and sleep! I occasionally get a little breakthrough but nothing like I was suffering. I'm not sure what it is, I'm cynical enough to not expect it to last, but at the moment it feels like a miracle. I suffered RLS EVERY night prior to starting ropinirole which soon became constant from about 2pm onwards when I suffered from augmentation. I can't remember when I didn't have it.....

So I have my next course of treatment recommended by Dr Buchfuhrer to show my neurologist (I don't expect him to know anything) but wouldn't it be lovely if I didn't need it! In the meantime I continue my current course of action religiously, I daren't miss anything just in case that is the vital ingredient..... And at the same time I expect it to start again at any moment.

[Madlegs1]

That's fantastic- fair play to you for persevering with that.

I hope every thing goes well for you with the Neuro.

Do you intend staying on the current regime or going on something else?

Cheers.

[Pam34 in reply to Madlegs1]

While ever it's working I'll continue but I don't expect it will last unfortunately!

Dr Buchfuhrer recommended giving pregabalin a go next. He also said I could top it up with tramadol 3 or 4 times a week without becoming tolerant.

I'll talk it over with the neurologist, let's hope it's someone with at least a bit of knowledge! I'll let you know.

Pam

[Joolsg]

I really hope it keeps working for you. Best of luck.

Jools

[Pam34 in reply to Joolsg]

Thanks - me too!

[Hidden]

It could be the taking the iron pills that are working, maybe it was your ferritin level was low and causing the RLS especially as you were suffering every night before the start of taking ropinerole. Altho taking iron pills usually takes months for any affect. Take the good from which ever is working and enjoy the relief you are getting. RLS is always in the background waiting to pounce, lets hope it will be a long time before it bites you.

[Pam34 in reply to Hidden]

Yes, we live with the fear of it and that's something I don't think will ever go away.

Thank you

[Shaft1952]

How amazing I am due to see my GP on Tuesday, I am on Ropinirole 3mgs, from 4pm the legs start I try to use daily my revisited 30mins & you can adjust the intensity. I do find that if I use that the restlessness dosen't start as early. I take 500micograms 5-6pm then depending how bad they are 2mg slow release Ropinirole between 7-8pm, then 9-30 to 10pm 500micograms. The difficulty i am finding now is they start anything from 5-7am & can be horrendous so I have to get up, I started taking 500mgs magnesium but in the morning. The revisited I speak of is a circulation booster & can be used for various conditions. I just wish I could switch mine of having suffered most of my life, my 2 sons also have it.

[Pam34 in reply to Shaft1952]

Good luck with the GP visit - it really sounds like you are suffering from augmentation. Don't let him increase the dose any further.

I can honestly say I feel so much better since weaning off the ropinirole - I didn't realise how bad it had got until I stopped and reverted back to my pre treatment levels.

Good luck

[Shaft1952 in reply to Pam34]

What was your previous treatment regime? Thanks for reply shakey52

[Pam34]

I was in 1mg of ropinirole for 6 mths and I was in heaven - worked brilliantly. I then noticed that my symptons were getting earlier and the tablets weren't lasting as long. I returned to the doctors and he said we just need to double the dose. I didn't question this so started taking 1mg at 5pm and 1mg at 9pm. 3 mths later the symptons appeared even earlier and the tablets were lasting for even less time.

This time I did some research and learnt about augmentation so on my return to the doctors when he wanted to up my dose to 3mg I refused. He replied augmentation was all conjecture (!!) and refused to support me coming off the drug. But he did refer to to a neurologist (7 month wait). In the meantime I saw another doctor who supported me off the ropinirole with the help of tramadol. (can't pretend coming off either was easy.) While I am drug free and waiting for my appt it made sense to introduce other things like iron, magnesium etc to see if I notice any difference.

[connie50]

hi pam34 I know what its like to wean yourself of repinarole I've done it, it not very nice is it? I take at the moment tramadol, one at 6.0 then another at 10.0 but I get very bad itching so I take a clarityn what for I don't know, because they don't do anything at all for me.it feels brilliant to be of repinarole did me anyway,I'm so glad you have conquered it hope you are drug free. please let me know how you get on. if you know of anything that will stop the itching I would appreciate it.

[Pam34 in reply to connie50]

Hi Connie

Yes, it's not something I'd ever want to go through again!

Tramadol worked well for me but I was nervous of becoming tolerant of it and having to go through withdrawal again. I guess that is the problem with any drug, but at the moment it frightens me. I'm sure this period of relief won't last and I'll be back on something - not a dopamine ever again though.

I'll let you know how I get on at the neurologist.

With regard to the itching have you asked the advice of a pharmacist - sometimes they have more ideas than doctors when it comes to medication.

X

[connie50 in reply to Pam34]

yes I've spoken to a pharmacist & he's said more or less the same take a clarityn (people that suffer with RLS can only take certain drugs & this is one of them) I go back to see my GP on Monday with a diary I've had to do,he's either going to send me back to see a neuro (seen one before) or send me to a sleep clinic,suffered with RLS for about 10yrs know & I think my GP has had enough like me.

[Franklin123]

Hi - I am really interested re drug free. Are you getting rls still and are you managing to sleep? I have been taking codeine for years and have not found it addictive. I just use it to top up when in serious pain - I have a osteo arthritis problem as well as rls. Just recently however, my bp has dropped in the diastolic part. My legs and feet swell, but rheumatologist said - just keep taking the pills??? He seemed very uninterested with regard to my information about iron/ferritin. Do they really care? The neurologist asked for me to be seen by him. If they are looking for something else, why can`t they say?

[Hidden]

Great news Pam. I hope all continues to go well.

[Pam34 in reply to Hidden]

Hi Manerva

Have you just replied from my post of 3 years ago? 😂

I’m somewhat past that place now. Was it just an error?

Anyway, things still going well with Pregabalin I’m pleased to report!

Pam

[Hidden in reply to Pam34]

Yes I did, sorry I don't know how that happened!!!!

Must have gone into a time warp.

What year is it anyway?

[Pam34 in reply to Hidden]

Haha I don’t know! Who am I?!

[Hidden in reply to Pam34]

I dunno. I have slept since 3 years ago.

Once or twice,

Glad to hear the Pregabalin is still going well.