Purchasing injections

[benjiluce]

Im having trouble ordering hydroxocobalamin from Goldpharma... anyone kno of anywhere else i can order?? Im desperate thanks 😕

[Penni]

Have you tried your GP? I get mine on prescription and as I get ESA I don't have too pay for them.

[benjiluce in reply to Penni]

I have them 3 monthly with the dr but thats a joke. I dont mind paying for them just from where

[Penni in reply to benjiluce]

Mine was the same at first but had a huge tantrum (as in full blown 2yr old type) and now rather that argue with me about how too treat my pernicious anemia they give me what I ask for. They are now more that happy to provide my b12 rather than me purchasing it as when I did that I ended up with far too low a dosage and almost ended up back in hospital. Try asking for the ampules on prescription. It never hurts too ask. Good Luck

[Hidihi in reply to Penni]

Penni. how does one do a SUCCESSFUL 2 yr old tantrum???? think my GP's would put me on the black list???

[Penni in reply to Hidihi]

After working with children for years and having to deal with their tantrums it was fairly easy. Due to a previous GP my b12 levels got so low I was given about 48 hours left had I not gone too hospital. A year on I still cannot feel parts of my hands and most of my lower legs, my hair is finally growing back as 75% of it fell out and have to walk with a stick. I'm 35!! but most days feel more than twice that.Plus it works out cheaper on the health service for them too just give me what I ask for rather than get so ill again that my pernicious anemia almost kills me. At first they would only prescribe them for every 3 months but as I order my prescriptions on line I changed it so I get a box of 6 whenever I need more. As I have purchased a large box of syringes and swabs they deal with my sharps box as well.

At the end of the day you should be able to ask for your b12 ampules on prescription. Everyone should!! We know more about how the condition effects us as we are the ones who have too live with it day in and day out. Not everyone has the same symptoms or suffers in the same way as someone else.

While I was in Hospital last summer it was discovered that I have had pernicious anemia since I was 14 but was only diagnosed at 29. Since then we have found out that at least 2 other family members had it and died from it. GP's really should listen too us more on how we treat this. Had my b12 not been stopped I would not have needed to spend 5 weeks in hospital or required months of treatment afterwards.

Sorry for the rant, sometimes it just needs too be done.

[Hidihi in reply to Penni]

no apologies needed for rant. you've been through an unnecessary & expensive hell, so a rant plus a tantrum are well in order. think, i'd be slapping a law suit on them if they allowed that to happen to me. Docs just seem interested in back covering, box ticking & balance sheet leveling these days.

it's shocking to hear how advanced your b12d was allowed to get before appropriate action was taken. can u access some methycobalamin that may regress the neuropathic damage done to your limbs? the PAS maybe able to signpost you on this one. what does it take to get these GP's to take action in the treatment of b12d. yes, i couldn't agree more re the patient knowing how their condition affects them much more accurately than the GP does. however, it sometimes seems night on impossible to get through the ego defenses, the deference & the bureaucracy. many give up trying, which of course is why the barriers are put there in the first place sadly????????

how frequently do u have to inject & are you making overall forward progress presently? hope there wasn't too much damage done to your cognitive faculties, memory etc?

[Penni in reply to Hidihi]

I'm now about as good as I'm going too be as have suffered too much nerve damage. Have good days and bad days with my memory so now keep 2 diaries, 1 that never leaves the house and 1 that goes everywhere. All my kitchen cupboards have post-it notes on them telling me what is each cupboard. If I need to take anything in particular with me when I go out I leave a post-in on the front door. I inject 1ml ampule of hydroxocobalamin every 3-4 weeks but depending on latest blood results may increase frequency. I'm also on 50mg per hour fentanyl patches for the pain caused by the nerve damage and change them every 3 days which doesn't help with the memory. The main problem is sleep or rather lack of. I haven't slept through the night in years and suffer with really bad nightmares.

[Hidihi in reply to Penni]

i'm really sorry to hear that it's not likely to get much better. what a sentence that could have been avoided???? is the insomnia due to the b12d?

[Penni in reply to Hidihi]

It has got better. When I came out of hospital I couldn't even stand up by myself so I've come a really long way. It's more than likely related, sometimes I get so tired that I have no idea what to do with myself and other days I sleep more than my cat. Yet again the doc's refuse too help with the problem.

[Hidihi in reply to Penni]

wow, it sounds horrific & knowing that it could have been avoided makes it worse. is the sleep problem a circadian rhythm disruption pattern or more random insomnia?

[wedgewood in reply to Penni]

Dear Penni,

Why don't you inject more often? There is no risk at all. Our Chairman Martyn Hooper injects 5mg every other day for the past 10 years.(in his latest book) you do make sure that you gave adequate folate, don't you? All the best to you.

[benjiluce]

Ah u are so lucky. Well i mean to have it on prescription 😝 good luck too... its so depressing 😞

[Strawberry_Dream]

Hi benjiluce. What problems are you having with goldpharma?

I ordered b12 about a month ago with no issues. When I logged in to my goldpharma account this morning, it allows me to put b12 in my basket and go to checkout.

I didn't put the order through as I don't need it just now. What's happening when you go on to the website?

[wedgewood]

Dear benjiluce,

Yes that has happened to me too. I now use E bay de(german E bay) to buy the very same Hydroxocobalamin (i.e. HEVERT)that you get fom Goldpharma Just looked for you and can buy 50 ampoulles for 37 Euros plus 12 Euros P&P . You can buy smaller quantities also. I have bought them from E bayde. for the last year. They are fine and have a long useby date, so if you want, you can buy a large quantity. There is also Cynocobalamin on offer. Make sure that you don't buy that instead. You can read on the picture what sort it is. Hope this helps you .Allthe very best.

[wedgewood]

Forgot to say .Just search for Vitamin B12 and that should get you to the right spot on E bay de.

[Gambit62 Administrator]

I use mycare.de - the site does have an English translation but its not the best. You need to pay for the first order up-front by bank transfer so it takes a bit longer - you get an email with instructions on making the payment - but after that you can pay by card and it is quick.

Hope you manage to get something sorted soon.

Know that there is something strange going on with Goldpharma in relation to money laundering regs and US, which may be what is causing the problem - another post in the last week or so.

[DraigGoch]

I buy from here

amazon.de/B12-DEPOT-ROTEXME...

If you don't read German cut and paste into Google translate, which is what I did.

I find the service excellent and reasonably quick, though the p&p seemed a bit steep.

[JanD236]

Do try your GP first though. After reading the problems so many have had in accessing adequate treatment I went to my GP ready to do battle but met no resistance at all when I asked for my 2 monthly injection a couple of weeks early. Without even asking he then suggested I go onto monthly injections for a while to see how that goes but said to come back sooner if I felt I needed it. So they're not all bad!

[Carlygeorge]

According to a FB page I am on Goldpharma has closed temporarily. They have 8000 members and it is to do with the visa regulation changes in the USA. We are recommended to use either Amazon.de as above or mycare.de