Withdrawal symptoms?

[NonnieJ]

Over the last 6-7 weeks I have been reducing my Ropinerole after augmenting on it.

So far I have gradually gone from 1mg twice a day to 0.75mg twice a day, at 5pm and 11pm. That doesn't seem a lot of progress but I am following the advice on here to reduce very slowly and I am coping with it.

However I also have osteoarthritis and investigations are going on at the moment into whether some of my pain is coming from a neurological issue in my spine.

I have noticed that since my last decrease in Ropinerole at the weekend , my pain has become considerably more severe and am wondering if this is just coincidence or whether the Ropinerole could have been holding some of my pain at bay.

By the way I have spoken to the doctor about blood tests for ferritin, etc, and these were done this week. She said my Ferritin reading in February was 22 and that there wouldn't be concern about that as 15 is the point at which they would normally take action.

When I have read posts in here the numbers have been in the hundreds so obviously that is a different type of measurement.

I just wondered if any one in here had opinions on anything I have mentioned.

Thank you all for your consistent help and support.

Nonnie(aka Bond-Powell)

[Hidden]

Hello Nonnie.

As regards the ropinirole, you appear to be reducing it in steps of 0.5mg i.e. from 1mg X 2 to 0.75mg X 2.

If you're coping with this then that's fine, but it may get get more difficult as the dose gets lower. A better regime in that case would be to reduce in steps of 0.25mg.

E.g. 0.5mg and 0.75mg then 0.5mg and 0.5mg etc.

As regards the back pain, it's possibly a coincidence that this is getting worse, but I couldn't say for certain.

You may find that you need a replacement for the ropinirole for your RLS. The standard replacement is an alpha 2 delta ligand, either pregabalin or gabapentin. These take about 3 - 4 weeks to start to fully work.

In addition these are also prescribed for nerve pain. I take gabapentin for both spinal neuropathy and for my RLS.

In which case it's better to start taking one before you stop the ropinirole.

[NonnieJ in reply to Hidden]

Thanks very much, Manerva. I think am actually reducing by 0.125 gm every 2weeks. I cut my 0.5 tablets into 4! Although I have requested 0.25 tablets now from the doctor.

I think I may have taken 8 weeks to get to this stage.

So in that period of time I have reduced to 75% of what I started on.

I may have expressed this wrongly in my last post!

I will ask for what you recommend when I get my blood tests results.

What was your opinion on my Ferritin result of 22 in February?

Many thanks

Nonnie

[Madlegs1 in reply to NonnieJ]

Ferritin of 22 would be extremely low, in my opinion.I would prefer to see you at , at least 100, if not 200 or even 300.

It might be an idea to ask for iron infusion, or at least check out the most efficient way of raising ferritin levels.

A search for iron supplementation on this site should be of help.

Always check in with your doctor before taking supplemental iron. Or you could email Dr Buchfuhrer at

rlshelp.org

With your history. He usually replies within 24 hrs.

You could show his reply to your Dr to support your case.

Quicker than waiting for a consultant, who may not even know anything about RLS.😱

Good luck.

[NonnieJ in reply to Madlegs1]

Aw thanks. I did have to have an iron infusion before an op 18 months ago. Thank you so much for replying. I am confused as the doctor said a reading of 22 was ok. But the highest number she quoted as acceptable was not in the hundreds, so I am wondering if it's on a different scale. Need to speak to her again next week anyway. I said do you know much about RLS and she said "No"!

Thanks again.

Nonnie

[Hidden in reply to NonnieJ]

Sorry, I forgot to address the ferritin.

A ferritin level of 15ug/L is considered "normal". However anything under75ug/L for somebody with RLS is cause for concern.

Please see this link

cks.nice.org.uk/topics/rest...

50% of RLS sufferers benefit from raising their ferritin to at least 100. Ideally it should be 200 or more.

Madlegs is correct in saying the quickest and most effective way of increasing your ferritin level is to have an IV infusion. It's not the easiest way. I'm afraid that you're unlikely to be able to get IV infusions on the NHS.

As your ferritin is under 75 then you could start taking an oral iron supplement and this can be effective in increasing it to 100, but will take a few months.

It's only really when ferritin is above 100 that oral iron supplments become ineffective and to raise it any higher would require an infusion.

Here's some more information about iron therapy

sciencedirect.com/science/a...

"Gentle" iron, ferrous bisglycinate, is recognised as a good option for a supplement. It is the least upsetting for your digestive system. It's over the counter so you shouldn't be able to get a prescription for it, and one isn't needed.

It's recommended that you take iron 30 mins before or 2 hours after eating, along with a glass of orange or a vitamin C tablet.

Despite many sources saying that you should take the supplement every day, it is actually MORE effective if you only take it once every two days. You can take double the daily dose.

[NonnieJ in reply to Hidden]

Thank you again, Manerva. That is really helpful and I understand now about the levels. I have today received a letter from the doctor saying I have a telephone appointment on Dec 23rd re my results. I will try to bring it forward as I want to get started on the Gabapentin.Are there any other pointers to look out for ? Haemoglobin for example?

I am so grateful for your help.

Nonnie

[Hidden in reply to NonnieJ]

If your haemoglobin is low, then that has to be corrected first before you can expect to raise your ferritin. An oral iron supplement will do that too.

[Robynasmith]

HiI am currently reducing pramipexole for the same reason

I also have osteoarthritis and a neurological pain condition and yes my pain has worsened

Personally I think the need to move more is aggravating both

[NonnieJ in reply to Robynasmith]

Thank you. It's always comforting to hear of another person's experience although I don't wish you all this pain.My pain is unbearable in my hips, buttocks , and soles of my feet . Coupled with RLS and reducing Ropinerole, .....

[frances1 in reply to Robynasmith]

I wonder if you could tell me you experience with pramipxole. I have been prescribed these for RLS. I a bit frightened to take it. I’m not very good with medication. Thank you in advance

[Robynasmith in reply to frances1]

Don’t !I’ve been taking it for 15 yrs and only now have been warned of the issues

My GP had said that long term use can cause early onset dementia and people on here have alerted me to augmentation

The sooner I can find a working strategy to get off these I am going to do it

[Heatherlss in reply to frances1]

If that is the first medication you're going to take for RLS don't. I began taking it last year and had very mild RLS before that. Now I've augmented and it is relentless. Also, it can permanently worsen your RLS

[Joolsg in reply to frances1]

I agree with others. Don’t take it. I was on Ropinirole for 16 years & suffered horrendous augmentation & a traumatic withdrawal. GPs in the UK should not prescribe it unless they have explained in detail the likelihood of Augmentation & the side effects or Impulse Control Disorder.

Most knowledgeable neurologists no longer prescribe these dangerous drugs & will prescribe alpha2delta ligands like pregabalin or Gabapentin as first line treatment.

They must first ensure your serum ferritin is above 100, preferably 250 as raising levels resolves RLS in 60% of cases & you wouldn’t need to take meds.

They should also ensure you’re not taking meds that cause or worsen RLS like anti depressants and anti histamines.

[puzzler1 in reply to frances1]

Hi Frances. I started taking Pramipexole about 7 years ago. It's very effective to start with but gradually you have to take more and then augmentation sets in. And then your doctor says you can't raise the dose any further at 6 tablets and in my case, abandons you. Thanks to this forum, I'm now reducing the prami very slowly and the withdrawal symptoms are absolutely hellish. I'm down to half a tablet (0.088/0.125) and up half the night pacing etc despite being on Temgesic (Buprenorphine) which is the new 'wonder drug'. At the moment the temgesic doesn't seem to be touching the breakthrough. But I'm ploughing on and determined to get the prami out of my system. The suffering at the moment is indescribable. Bizarrely, I have much less RL in my arms now but my legs are worse than ever.Sorry if I sound bitter but I can't believe my doctors have put me in this position. I'm just holding on to the hope that when the prami is gone and the augmentation recedes, then the Temgesic will control my RLS.

Please don't risk taking the Pramipexole and discuss alternatives with you doctor. Temgesic is a successful opioid which is becoming better known around the world for RLS but doctors are reluctant to prescribe it unless other options have failed.

I wish you good luck

[LotteM in reply to puzzler1]

Hold on, puzzler. It will get better.

[dklohrey]

I too suffered from augmentation from ropinirole, with my legs twitching during the day. I had difficulty driving and even watching the tv. I was at 3 mg. I have been off of ropinirole now for about three weeks. I have no symptoms during the day and into the evening. I find myself sitting in a chair and suddenly realizing that I had been sitting for a couple of hours with no issues. During my withdrawal I did have times when I had severe pain going down my legs and my lower back ached, while laying in bed. It even came back briefly this past week. I am currently at 600mg of gabapentin. When I first go to bed for the night, I have no leg twitching but feel generally restless, antsy. It usually takes me 2-3 hours to fall asleep. I suspect that I will eventually have to go up to 900mg of gabapentin, which seems to be the generally recommended amount for rls. I would then hope to avoid the antsy feeling that I currently have. I know that you will be thankful once you rid yourself of ropinirole and start to feel normal again. I had been taking ropinirole for so many years (20 years) that I was no longer able to discern what was rls symptoms and what was augmentation. I had just assumed that it was my rls getting worse due to aging. I was very wrong.

[frances1 in reply to dklohrey]

Thank you all for your input. I haven’t started them I did not like what I read side affects. I will not be starting them. I do not think Doctors understand.

[Lou9 in reply to dklohrey]

I just wondered out of interest, when you say your legs are twitching do you mean the muscles are involuntarily twitching or you need to make twitching movements to ease the feeling of restlessness? I recently started getting involuntary twitches mostly in my left thigh when I suppress the urge to move my legs.

[dklohrey in reply to Lou9]

There a twitching feeling, a sensation in the muscles, which necessitate the movement of the leg to relieve the sensation. There is no way to withhold the leg movement. So you find yourself kicking your leg.

[NonnieJ]

Thank you for that. I aim to be down 1mg by Christmas. I need to speak to a doctor ASAP to organise Gabapentin and iron/ferritin.I have a telephone consultation on Dec 23rd but I want to try to bring it forward so I can get the Gabapentin before the chemists close for Christmas.

I am also on Sertraline and Fexo...something (an anti-histamine) and Statins, although I don't know why Statins! I think it's because I have to take Blood Pressure tablets.

Your account is so encouraging and thank you very much for taking the time to write it. I find this forum such a help.

Many thanks

Nonnie.