Forum

Amiloride

Hi there - here’s hoping you all have your wellies on! Now, (apart from Stevie) has anyone else had success getting Amiloride from the quack/neuro? My GP basically is reluctant to prescribe in case I sue him in a year’s time (!) should it affect my MS detrimentally. I assured him that I wouldn’t dream of doing that (besides, my MS will quite happily continue to deteriorate without it anyway). I just wanted to give it as go in case it can halt things, it being the first thing in my 27 years of diagnosis that has come along that might possibly have an impact on PPMS. I realise it hasn’t yet been tested on humans, but I really don’t want to wait another three years for the trials to complete. I came back from GP feeling SO disappointed. Am I expecting too much? Debs

When you say it hasn’t been tried on humans do you mean it hasn’t been tried for MS? It is a drug that has been used for many years to treat water retention and heart congestion.

I must say I hadn’t thought of asking to take it personally but it is quite possible my dad’s taking it as a ‘water tablet’.

B

Sorry B, yes that’s what I meant, not tried in MS ‘humans’. Yep, I know it’s been out for donkeys (festive connection) years for other things. As such (ie they know it’s safe), I still reckon a GP/neuro somewhere will let me give it a go - it’ll either do nothing, do something - or play such havoc with my waterworks that I’ll come off it anyway! And no, I’m not really spending all Christmas Day on the compooter - just off to the rellies! Happy Christmas to anyone else who might be reading this on ‘The Day’! xx

Its interesting that amiloride is commonly used for high blood pressure. Some months ago my GP prescribed chlonidine hydrochloride (also medication for high blood pressure) because I was having bad menopausal symptons. The tablets have been brilliant; not only have the hot flushes gone away but so have the restless legs and shooting pains at night; they have cured my overactive bowel and I sleep so much better at night and the sensation of pins and needles in my hands has reduced. So there might be something in this. Let us know if you manage to get a prescription for amiloride and then if it helps any. Good luck!

[quote=“Londongirl”]

Its interesting that amiloride is commonly used for high blood pressure. Some months ago my GP prescribed chlonidine hydrochloride (also medication for high blood pressure) because I was having bad menopausal symptons. The tablets have been brilliant; not only have the hot flushes gone away but so have the restless legs and shooting pains at night; they have cured my overactive bowel and I sleep so much better at night and the sensation of pins and needles in my hands has reduced. So there might be something in this. Let us know if you manage to get a prescription for amiloride and then if it helps any. Good luck!

[/quote] Very interested to read that you have had relief of pins and needles in your hands. Could you tell me did you have pins and needles constantly in your hands i ask as i also suffer from pins and needles in the hands which has been constant for some 15 - 16 years, and when my hands are warm heating up high they go absolutely mad throbbing as well, to get even a little relief would be helpful.

Hello ladies, well that’s interesting - some benefits it seems from other high blood pressure medication too then … my letter to my neurologist ‘putting my case’ will be popped in a postbox later. Also, time to change GP methinks. I will keep you posted! Good luck too to you Deanne if you are going to try going down that route. Debs

Dear Deanne

The chlonidine hasn’t stopped the feeling of pins and needles but has lessened it and my hands no longer feel as though they’re about to explode.

Ceinwen

I went to the G.P. last week and asked about both drugs in the letter from the M.S. and she said they were both on trials, but both

drugs have been out for years for high blood pressure and epilepsy i think so why not for us???

Karen

So did she refuse to prescribe then? Sooo frustrating! Debs

Yea Debs no prescription given ,looks like Its going to be wait.

My mother in-law is on tablets for high blood pressure am going to ask her what she is on?

I went for a medication review a couple of days ago and as I already take blood pressure pills, gave him the literature to look at about amiloride and asked him if it was suitable for me. To give him credit, he read the whole article, but then told me that this drug was used way down the line for high blood pressure, for those with a lot more problems with it than me, and not a drug that he would prescribe for someone like me whose blood pressure was easily controlled with first line drugs. So he wouldn’t prescibe it.

Hilary

Interesting Hils. Not straightforward is it. I wonder what harm it can do? Are you still keen to try it (in view of possibly halting MS?) or are you happy wth GP’s decision? Debs

Debs, I don’t think I have any choice but to accept what the gp said - but if it had bveen suitable I would definitely have asked to be put on it, why wait 3 years to try it if you can have it now. Hopes dashed yet again, but that’s the story of our lives isn’t it?

Hilary

Just been to see my GP this morning - I have been on Ramipril for high blood pressure for some months, and discussed the same ‘why not change to Amiloride’ deal with him. Result was a prescription for Amiloride straight away, on the grounds that it can’t do any harm, and may do much good.

I have to see him for a potassium level and blood pressure test in a month, but other than that, he’s happy and so am I.

So - it does depend entirely on your GP.

Emrys

Excellent Emrys! Obviously the fact that were already high blood pressure meds has helped you get Amiloride. Also, great that your GP is willing to give it go, recognising its potential … and will keep monitoring things anyway. I am really pleased for you. I am just changing GP and shall see what new one thinks. Debs

Good luck Debs - lets hope the new one sees the sense in it. Emrys

Debs

Did you have any luck getting Amiloride from your new GP? and, if yes, has it helped?

Ceinwen

Hi all.

Amazing isn’t it how some neuros/GPs prescribe and some don’t?

My neuro has increased my dose to 2 x 5mg tablets daily, one morning, one evening, on the assumption that it won’t do me any harm. I had the potassium test after a month and was ok. But as with any medication and PPMS I don’t know if its doing me any good! My MS is definately getting worse, my mobility and balance are shot which on one hand makes me think all medication is a waste of time, but on the other hand makes me think if I wasn’t taking this would my progression be even quicker? Who knows? I’ve just been knocked back for the Streams (stem cell) trial because at 51 deemed too old! I applied when I was 49 and knew cut off date was 50, but it took so long to get approval for the trial that it put me over the upper age limit.

That’s a bug^er Steve. Why have the cut off date at 50 when most people get PPMS over 50?!

Have you had physio for the balance prob’s?

Pat x

Hi Pat

Physio worked for a while whilst I could stay upright for a short space of time, now I need a zimmer frame indoors and a wheelchair out. And this in 2 years since diagnosis! Feel like Ive been robbed as never been ill before! x