Subcutaneous injections

[Nackapan]

Am now going to look into sc injections to do at home. Can't be at the mercy of the sugery after the second time this has happened.

Does anyone get theses on prescription even if they pay full price??

[buster_uk]

I think you would have to purchase all the stuff yourself Nackapan. Unlikely NHS would fund it.

[Nackapan in reply to buster_uk]

Oh I expect that. Want it on my medical notes and keep with whatever they offer tomorrow. Maye a mistake. A shock though. And feeling ill again .

Do you buy your from Germany like others on here? Do you have any on NHS still?

[buster_uk in reply to Nackapan]

I have no NHS treatment. I buy from Germany. And needles and syringes from here in the UK.

Never had any B12D treatment from doctors or the NHS.

[Nackapan in reply to buster_uk]

Oh I didn't realise.

I thought you topped up.

What was your b12 level for them not to give it ?

It is working for you now isn't it?

It's so difficult trying to get our health back to a tolerable level.

[buster_uk in reply to Nackapan]

My lowest recorded level was 108. They just ignored it, they didnt even let me know. Just let me suffer for a further three years. With dropping levels. (Metformin, ppi) meds freely given. I searched my historic result and discovered the levels. I started myself on b12 injections because I was getting nowhere with the NHS.

Then out of the blue Dr. Says I want to test your iron an b12 levels, I'd been on injections for three weeks at this point so knew the test would be useless. Now they had there excuse not to treat me.

My result were 2000plus.

Dont trust any of them. There just paid pill pushers for drug companies and executioners for the government.

[Nackapan in reply to buster_uk]

So very similar level to me. 106.

Root of many of your problems I guess having no treatment at the time.

Too little too late offered. You having started your own treatent.

I hope you are doing okay now with having iron and weekly injections. (I think that's what you were having.)

I really hope improvements have been made. It just seems to take so long . Snakes and ladders . Not that I've climbed that high yet.

Take care

[buster_uk in reply to Nackapan]

Yer I've move up the ladders a little bit. I've also slid down the snake many times. I am like you three steps forward and five back at times.

Today is a had day. Not moved off the sofa all day.

I think sometimes I'm fighting a losing battle.

Isolated and alone.

Hope your striding forwards.

[Nackapan in reply to buster_uk]

No not really. Every time I try and 'get on ' I pay. I've not been able to move since back from surgery. Csnt shift head pain . Dosed uo with painkillers.

Remember Buster it's still early days.

I really hope this awful snakes and ladders improves soon. Never did like that boArd game so frustrating. I'm finding today particularly hard. Still have ti think though miles better thsn this time last year.

Take care and don't be a stranger to this forum.

[flosslechops]

go for it nackapan-buster's right,fighting the nhs is time consuming,upsetting and for many,pointless-DIY-do it yourself,wishing you all the best x

[Nackapan in reply to flosslechops]

Thank you. Also for all your 'likes"

[cocoa in reply to Nackapan]

I am surprised you have waited this long to take matters into your own hands.

There are others who self inject to top up when needed.

I am still debating, so always watch your progress.

Good luck for tomorrow.

[Nackapan in reply to cocoa]

Thank you. I was aiming for monthly injections at the surgery . Hoping this would be enough.

I've still not been given a reason for deficiency . Have not tested positive for PA. Had littke direction from doctors who keep coming back to anxiety. (Makes me cross)

Had some different symptoms last few days that have concerned me si will make sure I get my gp to listen. When I saw her I was still very limited as to what i can do but okayish. I thought she got it. Then blew it by saying "why haven't you got on a train to see your daughters new home." Ect .alsi asked if I had tried taking off my hat. Actually I walked into a food shop and csme over really ill started to stagger and hear pains started. I realised I'd forgotten to put my hat on. Sour yes have tried and without waiting for something to happen. My body told me!!!" Why I di not know.

Body less weak. Now ferritin leveks uo a biy. Head problems continue.

So now. I'm feeling very confused at the moment. Naively thought a neurologist would have some idea why so light sensitive. Csn only be so many yhings surely. ??He has actually discharged me. So 2 have now!! So who to see next unsure. I did myself no favours seeing him. He did look at mri report and gave me back to gp.

Sorry so long.

Hope you are doing okay.

[cocoa in reply to Nackapan]

In the end it is up to us to look after ourselves.

I had private health care for years and it got me nowhere.

B12 injections privately have helped but, like you, I have tried to space them out.

Fatigue is the worst thing … it isn't always possible to know when enough is enough and sometimes life just takes over.

I do try and do a few core strength exercises each day. I have been to see a NHS neuro physio and she has helped.

Take care

[Nackapan in reply to cocoa]

Thank you. You too.

Glad neuro pysio is helping you.

I do the vestibular Cawthorne pysio exercises I learnt at the beginning .

[cocoa in reply to Nackapan]

I have just come across this course:

selfmanagementuk.org

I did something similar a few years back called The Expert Patient Programme. It helped me fight my corner.

[Beatri in reply to flosslechops]

And takes precious energy.

[JanD236]

I asked my gp if it was ok for me to si as it was problematic getting a nurses appointment. He happily agreed and I currently have a repeat prescription for a box of 5 hydroxocobalamin vials every 5 months.

He said that for legal reasons he was unable to let me have a prescription for needles nor could the surgery help with the disposal of used needles so I buy these myself and my local council collects a sharps box once a year, no questions asked.

I also si using B12 from a German pharmacy as I find a frequency of once or twice a week suits me. However, I thought I’d be pushing my luck too much if I asked my gp to up my prescription.

So it’s worth asking, especially if the nurses are stretched at your surgery.

[Nackapan in reply to JanD236]

That's really helpful. Thank you.

[Wagonwheel]

I get a repeat prescription from GP for 3 x 5ml ampoules under instruction not to inject more than once a week also stocked up from Germany as back up as at the time I needed twice weekly. Buy everything else from UK, big sharps bin will take to chemists when full.

Haven't tried to get my prescription since my lovely doctor left so half expecting not to get it..

It's been about 16 months since being told I'd need injections for life, truly horrendous 3-6 months and slow frustrating and upsetting recovery but I'm starting to think I'm over the worst of it and will try to increase from once per week to biweekly.

[Nackapan in reply to Wagonwheel]

Yes it's a struggle. I'm 14 months In

Seem to at least need a B12 injection jection every 2 weeks. Still not able to do much but not I'll like I was trying Ito get to 3 weeks with the use of b12 tablet's.

Headache lifted and off to Gp today. Glad you are getting somewhere. Thanks for reply

[Wagonwheel in reply to Nackapan]

Thats good, I'd encourage you to take control and self inject at the frequency you need until you feel you don't. You don't need the added stress of uncertainty.

[Beatri]

Started my own injections yesterday. The surgery keeps B12 to themselves as they get paid for injecting. I get B12 from Germany.

[Sita505USA]

Hi Nackapan

I do injections every other day and have at times increased the frequency to daily. I have done this about 19 months. I have difficulty keeping my iron levels adequate and that has impacted my progress. Right now I am dealing with cardiac issues as stomach issues continue along with a range of neurological symptoms. I am still hopeful that I am making slow progress in some areas.

If you do the self injection route, I hope you will do a trial of more frequent injections to possibly help you get over some of the devastating symptoms you have. I am not a doctor, just a fellow traveler on this path that hopes you can get some relief from this terrible disorder. Best wishes for your recovery! Sita

[Nackapan in reply to Sita505USA]

Thank you. I've just got my ferritin leveks uo a bit. They dropped for some unknown reason. Feel better for that at least. You take care too

[waveylines]

Wishing you good luck Nackapan & every sucess.....good for you!

I do get mine on the nhs. They have agreed daily (up from alternate days) in the last few months. They provide me with the b12 vials on a green script & the nurses order in the needles & syringes as they get those from the hospital -cant put them on a script as they are restricted by whats listed (syringes are on there but not interchangeable needles. Nurse was very insistant that I should use a draw up needle due to potential fir fragments of glass)

Even though its 15 months since I started on alternate days subcut injections & 4 months of daily, I continue to improve. It was a long battle to get this so I started of buying my own for the first 6 months. I buy a low b complex with folate & that really helps me too. Am now doing a physio exercises to strengthen & build muscle as I lost a lot.