Forum

Getting a prescription for Prokarin

Hi everyone ,

I haven’t been on here for a long long time so I apologise to everyone who has sent me PM’s, I wasn’t ignoring you, just hiding from the world!

Anywho, I have had MS for over 10 years and I have a lot of problems (pain, numbness, balance, bladder and the list goes on!!). I am mobile but I suffer terribly with fatigue from the minute I wake up till when I go to bed and do not sleep even though I feel sick I am so fatigued. I have tried Modifinol and it just made my brain very alert and buzzed but didnt give me any physical energy. It did however really thin my hair to the paint that everyone was asking what had happened because I usually have really thick hair and now its like a little rats tail hahaha. Amantadine worked when I first took it but no longer does anything and my Neuro has said there is nothing else i can try and to just get on with it as it is part of MS.

I was looking at the fatigue section on this Website and I saw Prokarin on the list of treatments for fatigue. I had heard about it a long time ago but didn’t look into it then but I started to look into it and have read a lot of research papers and corresponded with the lady who has MS and patented it along with other people who have used it. I really want to try the patches as I am only 36 and I am struggling so badly with basic daily activities and I have found a chemist in America who can ship it to me (they don’t provide it in this country) but my GP will not give me a prescription for it. I am not due to see my Neuro for ages and they would not get back to me if I phoned about something like this as they dont really respond when I have had a relapse, well sometimes they will phone a month later if i am lucky!

So, I have a few questions!!! and I would really appreciate any help you could give me as I am currently hauled up in bed (no sleep again last night) on a lovely day with my dog staring at me waiting for her walk but I am really struggling just to get around my flat The poor thing is very patient but I keep getting a little paw tap and a big sigh or the death stare when she gets really frustrated hahaha and I would love a little light at the end of the tunnel for my fatigue!!

  1. Has anyone tried Prokarin and if so, did you get good results in terms of fatigue

  2. If so, how did you obtain a prescription

  3. even if you have not tried it, have you ever got a private prescription for something and how did you go about it?

Thanks in advance for any help or advice. I going to put my pooch on the treadmill for a while to work of some energy until im ready to walk her so don’t call the RSPCA about my doggies neglect hehehe

Thanks again,

Lyndsey x x x x x

Hi Lyndsey,

Yes, get the dog on the treadmill - l watch the Dog Whisperer and have seen him get people to do it with their dogs - have to be patient to start them on it. l watched them with a fat rottie - he was walking well on the machine - then stepped forward and walked off it - turned round so he was back to front - then turned again to put himself back in the right position. My two rotties were asleep on my bed whilst l was watching this - not impressed.

l have not heard of Prokarin - shall have to ‘google’ it. But l have been following the trial for Biotin for Progressive MS - which has a facebook group of 600 members in 4 weeks. Many of these are from USA. And l have learnt a lot from this group. As you can imagine - discussion soon gets side-tracked away from Biotin Trial - as everyone is keen to learn what other people from different countries take for their symptoms.

LDN - is very popular worldwide. And is taken to improve fatigue/energy/ and also bladder control. l have taken it for 8yrs and would never give it up. Now l get mine by private prescription via Emed. All l needed was a letter signed by my GP saying l had MS. They cannot refuse to do this for you - although they might charge you for it.

Biotin is B7 and is essential to all of us - and so are other B Vits. l learnt that a high dose of B1 Thiamine is also a good energy booster. So l am not taking the B1 and B7 + B6 and B12. They are all water-soluble so safe in large amounts as you only pee out what you do not absorb.

lts now 5 weeks since l started taking the high dose B vits - and l have noticed a difference in my balance/strength and energies. l try not to eat gluten - not that l am allergic - just that l feel so much better if l do keep down the amount of carbs l eat - makes me very tired - saps all energy. l feel more alert now - and looking to do things l would have ‘postponed’ before.

l haven’t been able to walk unaided for a few years - but l do get out on my scooter with my dogs for a good run over the fields. Have just shampooed one of them - she was a bit smelly [fox poo] and is also moulting - so l have washed her and brushed her well to get rid of most of the loose hair. She will probably go and roll again!!

Hiya,

Thanks for your reply. I got the idea of putting her on the treadmill from the Dog Whisperer!! I love that show hehe She is doing well on it and enjoys it but hasn’t quite come to understand that she is meant to stay on it for a little while! She jumps on and does a few steps and then gets of and then back on again. I have a little field over the road from my house but she has arthritis and has to have lead walks so its difficult on my bad days when I have had just a few hours sleep. I always get her out for the 2 30 minute walks that the vet recommends, just not when she wants them (as soon as she opens her eyes hehe). Awww the fox poo is a nightmare isn’t it?! Sometimes I bath her and i can still smell it on her (yuk!) and its a nightmare when they have had a bath and then roll in it again to but we wouldn’t be without them and their antics would we?

On the subject of LDN i tried that a number if years ago and it just didn’t work for me, actually that is not true, we just didn’t get on. I couldnt get above 1.5ml without being totally zonked and feeling very peculiar. It was a shame because I really wanted it to work and i persevered for many months with it but it just wasn’t for me. I am glad that you have had good results though I am als pleased that abstaining from Gluton works for you. I have also tried this but I didn’t feel any better so I just went back to eating healthily and cooking things from scratch.

I will look into the high dose vitamins whilst I am trying to obtain a prescription for Prokarin but I wont start them as I only ever start one thing at a time and try it for a long while so that I can assess if they are working and what the side effects are. The docs overloaded me with a lot of medication at the beginning and I didn’t know what I was benefiting from and which ones had side effects that where worse than the symptoms.

Thanks again for getting back to me,

Take care, hope the dog doesn’t go back for another fox poo roll heheh!

Lyndsey

Lyndsey, Prokarin was discussed on this forum in November 2013… http://www.mssociety.org.uk/forum/everyday-living/prokarin-and-fatigue

Ben

Hi Ben,

I have looked at that discussion but it doesn’t answer any of my questions sadly. I shall have a look to see if there are any other posts about it though. Its been so long since ive used this forum that I have forgot about how to use it hehe

Thans anyway,

Lyndsey

It’s a Histamine patch that you make yourself. I was tempted to try it but was prescribed Beta-Histine (which is a histine as well – I take it for balance problems). It may or may not be a scam but if it works for you great!

Hi Dave,

I have been looking into it (research papers, research centres testimonials etc) and the reports seem pretty reliable. The research results are no different from modifinal or amantadine - it works well for some people, doesn’t for others, but for those it does work for they get pretty good results in terms of their fatigue and its been researched for many years. The patch is ready made and you just place it on the skin. If i can get a prescription for it i will definitely try it! No harm and like you said, if it works for me it would be amazing

Does the Beta Histamine work for fatigue and did you get it prescribed by the GP or Nuero?

Thanks,

Lyndsey

Hi Lyndsey:

It was so long ago I don’t recall exactly…my feeling is that the Neuro suggested it and my GP prescribed it. I only started getting fatigue recently (went from RRMS to SPMS last year) so I can’t answer the fatigue question. I’d be interested to know your results if you go ahead with the Prokarin…

hi can we get the procarin patch in uk please

Is this available in the UK.