Ropinirole


#1

Hi
Is anyone having trouble getting ropinirole because I am can anyone help??


#2

Hi Onlyone = My pharmacist said he is having trouble getting the RALNEA brand of Ropinirole XL slow release. This brand always seems to be the worst brand to get, they seem to be able to supply a number of ‘generic’ ropinirole, which these do not seem to help with PD. It has got so bad I have had to request through my GP that I should not be subscribed any other brand but the RALNEA Ropinirole, so it might be worth having a word with your GP…

Good luck!


#3

Hello,
Sadly you are not the only one!! I’m afraid I’m not able to link you with my recent post on ‘Adverse reactions to changes in Ropinirole brands’, but I will tell the story again. Ralnea XL 8mg seems to be the only product that works for me. In October 2013 it was not available and I was supplied with Repinex XL which did not suit me. Again in April 2015 but this time given Ropiqual XL. Finally, December 2017 and I was supplied Raponer XL which leaves me feeling unmedicated. My pharmacist re-ordered Ralnea on Saturday but this morning he showed me his order confimation for a substitute. He and my GP only ever specify Ralnea but it just seems to be unavailable now and again. I don’t understand why the same formula can produce different reactions in users. I’m thinking about asking for trial samples of the various brands but that is probably not very practical. Next step is to ask for something other than Ropinirole, but the same problem could arise. I have a call booked with my PD Nurse Specialist tomorrow and will raise the subject with her. I’ll keep you up-to-date, but in the meantime my only advice is to try not let it get you down too much. If you’re anything like me stress and confrontation aggravates our condition.
Take care.
Bepo


#4

I had a long conversation with my Nurse Specialist today and it is clear that this problem is widespread and doesn’t just concern Ralnea. Apparently a change of any brand can cause adverse reactions for some patients, and there are regional differences between the generally preferred brands for prescriptions. Ipinnia XL seems to be the favourite in my neck of the woods – Devon.

My NS would welcome some research into this topic, but of course the driving force behind this is the need to find the cheapest source. I spoke to the pharmacist in a regional chain of chemists today to see if he could find a supplier of Ralnea. To cut a long story short if he got Head Office approval to buy it (depending on volume) they would pay something like £5 or less for a 28 tablet pack whereas my independent chemist would have to pay something like £50. That’s not the full story of course, but illustrates the general position.

These problems must be the same for many medicines, not just those for PD.

If my pharmacist is unable to get Ralnea for me I am thinking (as I said in my previous post) about getting my GP to agree to let me try some different brands in order to find those that suit me. The Nurse Specialist tells me that I would notice a difference in about two weeks. Unless of course I’m told that it would pose any problems.

To close, my only comment is that we should individually keep the pressure up, and fight hard for what is best for us.

Best of luck!

Bepo


#5

Hi Bepo
Thank you for your help I’ve just got my tablets but it’s a different make I’m still on repinirole but you this time it’s Spiroco do you know this make?
Thank you time


#6

Hello Onlyone,

Good to hear that you have some medication now. I haven’t heard of Spiroco - there seems to be so many to choose from!

My chemist has been told by the supplier of Ralnea XL 8mg that it is in production, but there is still no sign of it on the shelves. He has very kindly given me 21 x 4mg Ralnea XL so that I can make up my daily dose for a few days while he continues to try to get the 8mg packs.

I do recommend that you speak to your PD Nurse Specialist. The more people in the system who are made aware of how widespread this problem is the better.

Hope the Spiroco works for you. If you feel it isn’t bringing you any benefit go back to the Chemist and see what he/she says.

Try to stay cheerful.

Bepo


#7

I’ve heard of the Spirocco brand, I’ve had them, and guess what they weren’t any good for me! I’ve also tried the Eppinex brand, they were no good either. Up to now the pharmacy have been unable to get 8mg or 4m of the Ralnea brand, they managed to get 2mg which I have had to take 9 of them daily for the rest of the week to make up my 18mg! I’m hoping they will be back on track when I go for my usual supply at the month end… I live in hope!

So best of luck to us all, and try to stay cheerfull!!
Sheila


#8

Not sure it helps but I take Requip XL and have never had a problem (and I live in Cumbria)


#9

Hi all - it’s finally caught up with me now, they say they can’t supply the Ralnea brand of Ropinirole , the manufacturers only supply it to the hospitals so I am going to speak to speak to my Neurologist and see what can be done. - Sheila


#10

Hi Shefinn,
Funny you should mention Ralnea. Just had a new prescription and had Ralnea for the first time. I did have to return to the pharmacy twice as they’ve only got one pack sent at a time. I think I’ve been on every brand now. Very frustrating!


#11

Hello Divine 1,

Can you say which one of the brands works best for you? And which was the worst!!

It’s alarming how different these drugs can be. I have five other meds that I take for a cardiac condition and it makes me wonder whether I’m getting the ones that perform best for me.

Bepo


#12

Hi Bepo,
Its very frustrating as ive just collected the other half of my prescription and ive been given 2mgs Ralnea and 8mgs Ropiqual! The pharmacist agreed that its been difficult to get Ralnea.
Ive been on Ralnea for 3 weeks and don’t see much difference. In fact i think it gives me palpitations. Ropiqual made me sick for a few days when took it but actually when it settled down it made me feel better than I had been previously. Saying that, I’ve an appointment with the neurologist on Monday. I eant to discuss starting Siminet.


#13

Hello again,

I’m pleased to say that I think I’m beginning to feel better now that I’m back on the Ralnea - but for how long?!

It will be interesting to hear how you get on with a mixture of brands. Good luck with the neurologist on Monday. Have you mentioned brand reactions to him before?

Bepo


#14

Yes Bepo, have mentioned it and you get the same old story of 'theyre all composed of the same formula! I know that but alot of times its the coating or one slightly different ingredient. Ill report back on neurologist appmt.


#15

Hi Divine 1 - that is what I have been prescribed Ropiqual until I can get in touch with my Neuro on Wednesday to hear what’s happening. Very frustrating to say the least. I’m surprised you say you could not get on with the Ralnea Ropinirole, I have been on them for eight years now from day one.

Anyway all the best to everyone out there who is struggling with meds and no one listening or even bothered!

Sheila


#16

Thx Shefinn, its trial and error isnt it but in the meantime we suffer!


#17

When I was taking ropinerole was always Requip XL only had oroblems if change of brand.
I do not personally believe one is better than the other but once your body gets used to one brand likes to keep to it. Change of brands seem to upset system.

Prescription needs to name brand you need.

If one pharmacy cannot get it, try another. Give yourself a few weeks before running out before you collect so you have time to go elsewhere.

NHS have a new postal prescription service can they help?

I found Boots could order drugs other pharmacy could not, but this changes with stock levels.

Not sure this helps but agree it is stress we can do without.

Xx


#18

Hi Teehee,
Sound advice from you. My pharmacy are good but i must try Boots and see what they can do.

Hope you’re well.


#19

Hi TeeHee - didn’t think you could do that. Do you not need a letter or prescription from your GP as proof of your PD? It would be a positive if we could, cos don’t want to upset the apple cart while I’m ok with the Ralnea brand of Ropinirole.

Thanks - Sheila


#20

Just ask the Pharmacist for your prescription so you can take it to another pharmacy/ chemist.

Mine gets a batch of prescriptions delivered as nearby so if he is unable to get the drugs as named on my prescription. He hands it to me sometimes he has rung round on my behalf and has them ‘reserved’ for collection.

If this not possible and you still have problems it might be a good idea to discuss with gp surgery .

In any case you have the right to choose your medication provider.

The main thing is ensuring your GP puts the exact medication name on the prescription. For example Ropinerole Requip XL that way according to my pharmacist he can only give that drug not a substitution.

Hope this helps.

Xx