Where O Where Is the Ropinirole?

[cedesigns749]

Hi to the forum,

I have a problem with the Manchester are Suppliers.

If we read the statement that 1 in 10 suffer from RLS.

How can it be that the four major distributors in the Manchester area have no stock and don't seem in any way inclined to change that status.

My GP's Have a TRY this for a week. If it doesn't work come back and we can try something.

My original and lacking supply was Ropinirole I had no problem controlling my legs.

Since the lack of supply I have tried the GP's recommended Pramipexole, Of no Value,

Well try Pregabalin, again as much use as a Chocolate Spanner. Some distributor out there in the greater UK has a solution but my pharmacist can't find them. Probably due to Protocol/ Practice.

I am only surviving these unhelpful remedies with a latent stock of Ropinirole, I have sufficient to find a solution at one per very late night/ early morning, for the next 10 days then I am back in the wilderness.

[Kaarina Administrator]

There must be many people with Parkinsons who are prescribed Ropinirole. Why not call the Parkinsons UK helpline. Call FREE on 0808 800 0303

Opening times: Monday-Friday: 9am-7pm, Saturday: 10am-2pm

​(Closed Sundays/Bank Holidays)

Perhaps you may get some help from them.

[Joolsg]

Same here in London for 0.5mg tablets. My pharmacist says you can possibly get other sizes eg 0.25 or 1 mg. I'm in the middle of withdrawal because of severe augmentation so I am not as desperate (using tramadol to help rls during withdrawal) but I know I would be hysterical if supply of ropinirole had been stopped when I was still taking 3mg a night. I really hope you find some soon.

[Shaft1952]

I live in south Cumbria and have also had problems getting my prescription filled. They say it is a manufacturing problem. This drug is also used in the treatment of parkinsonism. They can't just miss tablets or change medication. What are the manufacturers up to, is the price going to go up for the NHS, if the manufacturers have issues with ingredients in this drug they should notify GPS or pharmacy's. Shaft1952

[Junebrad]

Seems this is not just Manchester I have had the same with the 1mg not avaible in Birmingham

[LoisTonya]

I had this problem with 1 mg tablets but ,after a few days , the chemist was able to get me some .5 mg and dispensed twice as many. He did have to ask the doctor for a new prescription detailing the new strength but it was done efficiently. This was in Cheltenham a month or so ago.

[Lindy14]

The experience I have was similar. It's interesting how these pharmacists can change their values if it would mean revealing their image to fellow pharmacists being tarnished, or that they would need to exchange some money with a pharmacist who is with another company. The one I was dealing with was based in a NHS hospital as I had just had an OP with the neurologist who had given me the prescription.

I had contacted several local pharmacists who said they had a supply, but the hospital pharmacist said he could not take them as he would have to pay them despite the cost being covered by me being covered by the NHS.

I said he should contact the other local hospitals and he said he had done so, but they didn't have any. SOMEHOW he managed to get some when I said I was going to speak to the consultant and also ask my GP for some advice.

I agree with you that the pharmacists, whatever group they belong to should have access to the medicine's that are likely to prescribed however rare their are. I think between them they should draw up a list of all drugs / treatment regimes they use and arrange for each of them to take on responsibility for keeping a supply for one type of medicine (i.e., all drugs for treating neurological conditions), so that the others in the group can get a supply if they run out.

It might be worth us noting these problems as the pharmacists seem to be lacking in knowledge about health problems as they don't seem to be aware of how this condition affects us. How about offering our services to the Royal College of Pharmacists to provide a slot when they are getting training sessions or updates about a particular condition (Yes, I mean RLS) to explain just how this condition affects us, physically, psychologically and socially?

Lindy

[cedesigns749 in reply to Lindy14]

Totally agree,

I have begun to produce a series of charts 'My RLS Monitor' supplied by HealthUnlocked. These to highlight to all the GP's who contributed to the 'Take this! If it doesn't work come back and we (we?) can try something else and a copy to my Pharmacist to gain some support in getting supplies timorously.

Regards.

Geoff

[Hidden]

Hi, I just left a post. Please read. Thank you. Arden Katz

[cedesigns749]

Hi,

Since my first post I have made some progress?

Glaxo Kiln have indeed resumed production and distribution is ongoing, I contacted my Pharmacist on Saturday morning to hear the the promised distribution is in effect and she has ordered a 84 supply to test.

My conversation with Alliance revealed that Ropinirole was no longer in their 'Portfolio', was their reply. When I commented on this reply with an ad joiner that I had informed the RLS- Forum of the lack of interest, brought a rapid response and correction, that they still produced 2,3 and 4 mg strengthens, Say what you mean is OK in my book.

Hopefully I will be able to get back on the Ropinirole medication and have a few stable nights.

My thoughts though are, Where is the cure? the drugs available only try to control and stabilise the problem, not fix it. S.O.W.T.O.N. (so where to now)?

Geoff