An Update and a Question

[Catlady4921]

Hi Everyone , Just another update , I am off Ropinerole completely now and have been for 3 weeks but now the big battle …coming off Sinemet which I have just started !! My new GP has told me that my Serum Ferritin levels are at 22 or at l least were at the beginning of June , he says I don’t need to take any more as the levels are satisfactory . I can’t remember what the advice was here re the levels but I have a feeling it should be higher , is that right ? I also managed to get him to PROMISE to listen to Julie Gould’s excellent radio interview so 🤞🤞🤞🤞. Thanks all , what a brilliant forum this is

[MissRita]

I’m curious why your doctors taking you off all the meds?

[Catlady4921 in reply to MissRita]

It’s really me taking myself off both Ropinerole and Sinemet based on the advice received here about Augmentation which I believe I have suffered from for some time . GP is still prescribing Pregabalin .

[MissRita in reply to Catlady4921]

✅

[Elffindoe in reply to MissRita]

I noticed your question and can't help but answer.

Catlady is suffering from RLS and has been on dopaminergic medicines for a number of years. As a consequence she was afflicted by a major complication of these drugs known as augmentation.

Augmentation only occurs for people suffering RLS, not anybody else. So for example it will not happen with somebody who has parkinson's disease, (PD).

Hence taking ropinirole and sinemet will not have the same problem, augmentation, that it does for anybody with RLS.

Unfortunately some people have both RLS and PD and this can be a real problem, but if you only have PD, without RLS, it isn't.

Catlady only has, I gathe,r RLS and NOT PD, therefore she doesn't NEED the dopaminergic drugs.

I'm guessing that Catlady's DR did not take her off the medications, she made her own descion to do this having discovered that the meds she was taking have caused her augmentation.

It does appear that her Dr is actually profoundly ignorant about the management of RLS. If they weren't they wouldn't be prescribing sinemet for RLS, it'sposibly one of the worst things you could do.

You'll also note that her Dr has no idea about iron levels and RLS.

This is not a criticism of this DR, it's very unusual for any DR to know much about RLS. This includes specialists.

If you yourself do NOT have RLS but are taking levodopa (sinemet, madopar) and/or a dopamine agonist, (pramipexole or ropinirole) for your PD, then no need to worry about augmentation or coming off these meds.

[Elffindoe]

Congratulations on getting off the ropinriole. Well done!

Your doctor is correct a ferritin level of 22 is quite normal

BUT

Your doctor is wrong. For somebody with RLS the ferritin level needs to be at least 100. In which case a levelmof 22 is c--p!

No surprise that your doctor doesn't know this.

The recommendation is if your ferritin is less than 75 then you should start taking an oral iron supplement.

I don't advise asking your Dr for a prescription. Prescription iron may actually do more harm than good.

An over the counter iron e.g. ferrous bisglycinate (gentle iron) is sufficient.

The amount of iron you take is important, it seems that you should take less than 60mg at any one time.

Tyhe following are recommedded as ways of increasing how much iron is actually absorbed

1) take it in the evening

2) drink orange or take a vit C or folic acid tab at the same time

3) do NOT take an antacid or magnesium at the same time

4) take it on an empty stomach i.e. one hour before eating or two hours after

5) only take it once every two days, NOT every day.

Note that iron absorption is limited by a hormone called hepcidin which can be triggered by doses of iron above 60mg and can stay active for 24 hours. Hence the limited frequency and dose of iron can increase absoprtion by up to 50%.

I'm guessing your Dr doesn't klnow that either.

If you want to educate him/her you may like to show them these links.

mayoclinicproceedings.org/a...

pubmed.ncbi.nlm.nih.gov/319...

[RLSdaily in reply to Elffindoe]

I love all this great info. Saved me a while back

[Memmy in reply to Elffindoe]

I'm having my ferritin level checked soon. The last time it was 103 and the time before 73 How high can it be as I've heard too much can be a problem. Can I still take gentle iron if it's over 100.

[Elffindoe in reply to Memmy]

There's no harm in continuing to take the iron, but it's considered that if ferritin is over 100, there's really not a lot that can be done to raise it further.

Oral iron is only recommended if ferritin is below 75

IV iron infusion is recommended if it's between76 and 100.

Continuing to take it may prevent it falling again

[Catlady4921]

Thank you so much for another helpful response Elffindoe , exactly what I was needing to learn . Unfortunately we are still only doing telephone consultations otherwise I would have much to show him , I think if he actually does listen 🤞🤞to Julie Gould’s interview that will be a big step forward . You are absolutely right , he knows nothing about RLS so hopefully …..Thanks again 😊

[Elffindoe in reply to Catlady4921]

You can start the iron without any consultation.

[Catlady4921]

Thanks again , I plan on a trip out tomorrow to buy some , 😊

[Joolsg]

Oh god. That level of 22 is not fine AT ALL. Another clueless doctor.For RLS it has to be above 100, preferably 250. Start taking ferrous bisglycinate at night & take EVERY OTHER NIGHT as it raises levels faster.

The NHS and NICE guidelines on RLS state a level of 75 but GPs don't even bother to read those.

I wish you strength.

I strongly suggest you buy

'Clinical Management of RLS', second edition by Drs Buchfuhrer, Allen, Hening and Lee. It's quite easy to read for a lay person and you can show it to your GP.

The more you read, the stronger you'll feel able to argue your case with your GP surgery.

[Catlady4921 in reply to Joolsg]

Wow , thanks Joolsg I will be buying iron today and will order the book which sounds very interesting , Thanks again 😊

[Catlady4921 in reply to Joolsg]

Have just ordered the book which after I read will lend to the surgery in the hope that one at least will read it . I am also hopeful that he listened to the radio interview he certainly had brought up the right page as I spoke to him so fingers crossed 🤞 What a fantastic site this is you are all totally brilliant…a huge thank you . I was completely bewildered before I found it and now have a new drive and focus , by the way the GP who told me that the “ NHS could do no more to help me “ disappeared rather suddenly 😊

[Joolsg in reply to Catlady4921]

Let's hope he has retired as no one should ever be told that by their GP. X

[Catlady4921 in reply to Joolsg]

I will second that Joolsg !!!!!!xx

[Runedrun26]

How long were you on ropinerole and how much were you takeing I’m trying to off it

[Catlady4921 in reply to Runedrun26]

I was taking Ropinerole slow release maximum dosage for at least 6 years and ordinary Ropinerole for several years before that . Stay the long road and you will succeed, it’s not easy but if you take it very , very slowly you will win the battle . Good luck .

[Biscuitface]

Ferritin should be more than 100

[Catlady4921 in reply to Biscuitface]

Thanks.