Really fed up with fatigue - was supposed to go out for curry this lunchtime with my lovely husband. But just too tired to go. It’s now 6.30pm and could go out now as not so tired. That really makes no sense to me. To tired to go out for lunch but could go out for tea. I am currently on Modafanil. MS society info on fatigue mentions Prokarin. It’s a cream with caffeine and histamine. Not sure where you can get it in the UK or whether its any good. In USA costs 249 dollars a month - that’s £154 - pricey. Anyone tried it and is it any good. Might be tempted to try some pro plus tablets or even red bull!!! Any thoughts appreciated Hugs Min xx
Hi flowerfairymin,
Can’t give you any feedback on any meds but just wanted to say that I get the same symptoms: Absolutely shattered at lunchtime but much better now - it just doesn’t make any sense does it? All I’ve taken is a couple of cups of coffee and am now contemplating a JD & coke to end a busy week. I’d be interested to know how you get on with the Red Bull/Pro Plus.
Hope you get a nice tasty curry with your lovely husband soon.
Hugs too!
xx
It sounds very expensive. Are there any reviews / customer responses on the site that has it on sale? Have you tried LDN? Boosts endorphins and meant to improve symptoms in general. Can’t remember what specifically it says about fatigue. Might be worth looking into. Cheaper than this cream too! xx
I can’t advise about fatigue as I don’t suffer from that myself. As for prokarin , wasn’t that the new wonder drug from maybe 12 , even maybe 15 years ago, had forgotten all about it. Cheryl:-)
Hi. I’ve been taking Modafinil for several years now. At first it was life changing but now I think that my body has just become tolerant of it? It doesn’t have the effect it used to? I don’t want to mention it to my Neuro or nurse because apparently i’m very lucky that my GP prescribes it? Its unlicensed in The UK for MS (it’s a Narcolepsy drug) so it is very expensive to prescribe. I was told that ‘if your’re already on it - you’re ok but if you tried to get on it now that you wouldn’t stand a chance’??
Min,
l am very interested in this - PROKARIN - l did google it and read the ‘blog’ about the lady who has found it to be such a help.
l noticed that the FDA - have not OK’d it. But then as it is so much cheaper then other ms-related drugs - it does not surprise me.
lt all comes down to the Big~Pharma.
Shall look into it a bit more - and if you find out anymore perhaps you could post it on here.
l was so disappointed with the said results of Fampyra - and even more upset at how it has actually left pwms with more disability then when they started on it. How did this drug get past the researchers.
Anyone else heard more about ~Prokarin?
Hi space jacket, it was the new wonder drug for ms, 12 maybe 15 years ago it was going to revolutionise treatment, but it seems to have not been mentioned for a while. I’m actually surprised it is still going so maybe it does have some benefits. I’ve had ms for a while so I’ve seen all these wonder drugs come and go, I guess for the most part prokarin was a failure too, it certainly hasn’t revolutionised ms treatment. Bu if you suffer from fatigue and can afford it, guess it might be worth a try. Cheryl:-)
Space jacket Do you have experience of stopping Fampyra and getting worse than before? I got Fampridine (Fampyra) from the USA five years ago and had to stop after a few months when my doctor retired. I certainly lost the amazing benefits but didn’t become worse than before. When Fampyra became available in the UK I started taking it again . I’m one of the lucky responders and the many benefits returned.
Hi Cheryl,
This is one that passed me by - been looking into it - and its origins go back to the 1950’s. lts a ‘medication’ to treat fatigue - certainly not a cure. Histamine/Caffeine. Seems it works well for many but not for all - certainly not recommended for asthma sufferers. Because it is a very cheap medicine to manufacture - the two components mixed into a cream then applied to the skin via a patch - l can see why pharmacuetical companies are not going to test it. And the nurse who has come up with the ‘concoction’ is not going to give the names of the type of histamine as she is hoping to ‘patent’ it. lt seems it does not work by ingesting it in capsule form - only via absorption into the skin/blood. Caffeine, l know is useful as an anti-inflammatory - get the blood flowing better.
Lets hope we do hear more about it - certainly does have a lot of ‘followers’. Surprised, that the nurse who is ‘pushing’ it - who has had MS for years - is holding onto the secret ingredients. lf l had stumbled onto a gem of a good thing that would help so many - l would not be wanting to make money out of there illness. l suppose if someone bought the cream and analysed it they could of course come up with the answer.
As ever, l am always open to anything that can help this miserable condition. As ever the optimist.
Johnh
l have had SPMS for 31yrs - so when Fampyra came along - and at last something for us SPMS’ers - l was very optimistic -then after reading posts on here and on other places l was very disappointed with the results. l can’t take the risk of getting worse.
You have been lucky - and that did encourage me - but then someone else comes on who has had such bad results.
l hope it continues to work well for you.
Thanks for all of your replies. Spacejacket - Didn’t realise the caffeine had to be absorbed via the skin for it to work. That blows my pro plus or red bull experiment out of the water. But what the heck I am more tempted with my red bull experiment as its especially nice with vodka!!! Annelda - not tried LDN but it is on my list - good point about it being cheaper than prokarin Thanks again my friends Min xx
My late husband tried Prokarin for about 6 months, around 10 years or so ago. He had PPMS which was progressing quickly, and was very keen to try anything that might help. We did lots of research and decided to give it a try. Don’t know what the procedure is now, but we had to have a telephone consultation and direct contact with the pharmacist in the USA. It was a very expensive process, and as well as the cost of the treatment, import duties had to be paid at this end too, pushing the price right up. The Prokarin was packed in polystyrene with ice packs and arrived still cooled, so that side of things was fine. You should expect a skin reaction at the site where it’s applied, which he found uncomfortable. However, he didn’t see any improvement in any of his symptoms and gave up after 6 months. Having said that, I’m sure others did have a positive result, and wouldn’t want to put anybody off of trying if you can afford the financial commitment. Hope you don’t mind me commenting, but even though Geoff has now passed away I do like to still visit the site as MS was part of our lives for so long and I still feel a great connection to the MS community. Good wishes to you all x
Min,
l have been taking LDN for about 6yrs - and for me its been great. Not a cure - or a treatment - but it does make you feel more positive - and better able to cope. So whats to lose. [about a £1 a day]
Juneb - it really is a pleasure that you are still visiting the site and you are still concerned. I am so sorry for your loss of Geoff. Thanks for you sharing Geoffs prokarin experience. Sad he did not benefit. It seems a lot of hassle and expense to obtain. Perhaps I’ll make a very concentrated double expresso and mix it with moisturiser. Not sure where I’ll get the histamine from though. Any chemists out there??? Hugs Min xx