B12 injections wearing off after 6 weeks

[leasparkles]

Hello..I am after some advice please. I am new to this whole PA/b12 deficiency. I was diagnosed the beginning of the year and received my loading dose injections. At first I felt worse which I read is quite common. I had my last loading dose the end of Jan and I did start to feel improvements. My family noticed the difference in me and for the first time in a while I felt human. Anyhow 6 weeks later and I can feel the effect of the injections wearing off. The fatigue is returning, the brain fog too..my balance is off and im starting to walk in to door frames etc..all the symptoms I had before are basically returning. I am not due my next injection until the end of April. I can not carry on like this for the next month. Im a community carer which is very physical and demanding..as well as having 2 young children. I want to see my GP about having more regular injections. From what I read on here it seems this can be quite a battle..any info on how to approach this with my GP and any advice in general would be really appreciated. Its quite demoralizing as I was just feeling like me again and now its like the rugs been pulled out under me 😣

[JanD236]

It’s definitely worth seeing your GP to explain your symptoms and when they return. Guidelines have recently changed to allow the injections to be given every 2 or 3 months so at the very least you should be able to get your next injection sooner because of this.

My GP was very helpful when I spoke to him. I was already being given injections every 2 months but was struggling the last few weeks. He agreed to let me have monthly injections to see how that went. That was a couple of years ago and luckily for me a monthly injection has stayed on my list of repeat prescriptions.

I did find that with a monthly injection I could function and live my life but I wasn’t able to return to the gym and cycling. I decided to try self injection and for the last couple of years I’ve had a weekly injection and am almost back to normal, including sports activities.

I think your starting point is with your GP and if you don’t have any luck getting more frequent injections you may have to consider self injection, as do many of us do in this forum.

Good luck!

[leasparkles in reply to JanD236]

Thank you so much for the advice. My gp is very good but lately its been a nightmare getting an appt with him. But I will persist and lay it on the line. Self injecting might be an option but not sure I could afford it..is it expensive?

[wedgewood in reply to leasparkles]

Self injection is very cheap , especially if you buy in bulk ( 100: of everything ) Today , I Just looked up the cost on bodfeld-Apotheke.de a German online pharmacy where I usually obtain my B12 Hydroxocobalamin ampoules 10 ampoules today cost €5.70 . ( you might need a translation app , as the site is in German . Search for Rotexmedica B12 depot . “Depot “ is important to look for ,as this indicates Hydroxocobalamin not Cynocobalamin . Hydroxocobalamin is the form of b12 in general use in the NHS .

That’s about just under 50 pence each . But the courier costs €9.00 no matter how many you order . So I always buy 100 . The use - by date is about 2 1/2 years , and I inject once a week . We are forced to buy abroad because B12 amoules are only obtainable on prescription in the UK. With needles , syringes , and swabs , the cost is just over £1.00 for an injection . (medisave.co.uk ) You also need a yellow “sharps box “ for safe disposal of used needles . There are other German online pharmacies that sell B12 ampoules .Also Amazon.de has a site in English where you can buy the ampoules . You need to trawl through the online pharmacies that supply through Amazon .de till you find one that ships to U.K.

If you are forced down the SI route because you are unable to get extra injections at regular enough intervals from your GP ,to keep your PA symptoms at bay, come back here for any help you might need . There are videos on utube demonstrating self -injection . Some are good , some not so good . Very best wishes .

[leasparkles in reply to wedgewood]

Thank you so much. Will see how I get on with the GP..its nice to have this forum to turn to as felt a bit lost as who to turn to..no one seems to understand..even some of the medical team ive had interactions with. Thank you again xx

[Ritchie1268 in reply to leasparkles]

You're right in its nice to have this forum, as I too didn't know where to turn after my symptoms returned very soon after my 3 monthly injection.

I tried my Dr & he agreed but, wanted me to have my B12 level checked again, it was obviously "within range" so I got nowhere. I learned early on from here that testing your levels once injections start are pointless.

Good luck with your Dr, you may get some joy though many don't.

If it wasn't for wedgewood stating where to get supplies from & others on here who encouraged me due to my then phobia of needles, I would still be suffering.

I now inject every other day after keeping a diary & I feel like I've actually claimed my life back!

I still have certain issues but most have disappeared & the issues I do have are manageable.

Good luck!

[MelanieV in reply to Ritchie1268]

Hi Ritchie, I am on my 15th injection but none of my symptoms have gotten better. How many injections did it take for you to feel at least some improvement? I started February 5, 2019 and it is now March 10. Looking forward to your reply. Glad you are feeling better.

[Ritchie1268 in reply to MelanieV]

Hi Melanie.

Sorry for late reply, had a busy day.

I didn't feel any different at all during my 6 loading injections. Then actually felt worse until around 2-3 days after my first 3 monthly one, but that only lasted for 2 days, then felt terrible again until 2-3 days after my second 3 monthly injection, but again, for only 2 days, then terrible again.

It wasn't until I was refused Injections more often, that I decided to self inject.

I tried once per week but no change.

Then a week before Xmas, (if I remember right!) I decided to SI every other day for 2 weeks & started to feel much better towards the end of the 2 weeks of every other day.

I eased off again & tried once per week but after 3 days I felt terrible again. So now I've just accepted that I will just have to SI every other day, as if I leave it any longer I'll go back to how I felt before.

I've always kept a diary of how I felt, when I improved & for how long etc.

From what I've read & what I've read on here etc, as everyone is different, it does vary. I've also read that it also depends on how long you've gone undiagnosed as it starts to repair the damage the deficiency has caused before you actually start to feel any better in yourself.

Thank you, I am feeling loads better than I was, even though I still have some problems, I'm learning to manage those & they're minor compared to how I was.

I hope you get sorted & start to feel better soon as it's terrible for you!!

Take care.

[MelanieV in reply to Ritchie1268]

Thanks Ritchie, I hope so. I have been like this for 2 years. How long had you been sick before you started injecting?

[MelanieV in reply to Ritchie1268]

Hi again Ritchie, are you doing methyl or hydroxo?

[Ritchie1268 in reply to MelanieV]

I was put on firstly Oxycodone & then Oxycontin for my back around 16 years ago & I became completely addicted to it for around 12 years.

It destroyed me.

I will have been off of it now 4 years in August this year. All of the symptoms I was having, I just put down to all the Oxy my Dr at the time had me on as I was on enough to take down an elephant or two towards the end.

I started to get all these weird symptoms along with depression, anxiety, fatigue, etc etc around 5 years ago when I started reducing it. I just put everything down to that & withdrawals etc. I'd never been depressed or anxious before & in my job I dealt with people daily, presentations in front of company directors etc, I was fine with all of it.

My Dr tried me on antidepressants for ages but nothing worked & because of what happened to me regarding the Oxycontin, I refused to take anymore when it had no effect.

He finally did a full blood count in April 2018 (If I remember right), which showed up what I have now. I'd never heard of PA or B12 so after reading up I then find out that Heroin addicts get B12 deficiency so, I guess it was the Oxycontin that did cause it!?

I have Hydroxocobalamin as it's the standard what NHS use in UK.

[MelanieV in reply to Ritchie1268]

Hello Ritchie, I hear you. I was given prednisone for tendonitis in my glutes after a chiropractor worked on my sciatica and he pulled one of my tendons in my leg too hard. I also had a frozen shoulder. I was probably on 5 medrol(prednisone) packs in a 2 year period. After the last medrol pack is when my symptoms started. So, I blame the steroids. I cannot tolerate antidepressants for some reason due to my stomach issues and I am also scared of them as they are hard to wean off. I have been on xanax for almost 2 years and am in the process of weaning off but it is hard as it is the only thing that makes me feel decent right now. I am using gabapentin to wean off the xanax but I swear that makes me more weak and shaky than I already am. I hate these meds. I am also doing the hydroxocobalamain. Well, good luck and I am glad you are doing better. Hugs and prayers your way.

[Ritchie1268 in reply to MelanieV]

Bless you Melanie. It is a very hard struggle for you!

My then Dr had me on Gabapentin, Pregablin, Amitriptyline & almost everything going for my back problem, but the one thing I wouldn't try was Morphine as I was worried about the strength & had a responsible job. It wasn't until it was way too late that I realised that the Oxycontin the Dr put me on was actually Heroin.

I'm really sorry for going on about my issues with Oxycontin as I've ranted on here about it before 🙄 but I do blame it for messing me up back then. I did lose everything through that one drug & I believe it is the reason for the issues I have now.

If it wasn't for my partner & around 18 months of trying everything to get help to start to come off of it, I know I wouldn't be here now & I'd be just another statistic like the hundreds of thousands, very sadly in the States & Canada.

There was pressure from my local Member of Parliament & an amazing lady from a drug charity in London that I found by pure accident, that talked the clinic into helping me get off the Oxycontin, after they turned me away the first time.

That same clinic have now asked me to attend a training course on 22nd March for a new volunteer role that involves talking to addicts on how to improve the service these clinic's offer.

I always said going through this, that if, (and it was a big if at the time), I did ever claim my life back, I wanted to help others in a similar situation, as the help for me back then was almost non existent.

The Dr's at the clinic said because of my attitude now & how much I've learned through my own experience, I could make a great career out of it with the right training, due to being one of only a handful of people in the surrounding counties who have actually been there & come out the other end, so that those who are now where I was will be able to relate.

I've always believed that everything happens for a reason, so, even though it very nearly killed me, perhaps it was meant to happen so I am now in a position to help others?

This place is full of amazing people who are always here to help & support others. I really hope you start to feel an improvement soon.

Good luck Melanie.

[MelanieV in reply to Ritchie1268]

Hello Ritchie, thanks so much for letting me know all this. At least you have a diagnosis as I still don’t have one and am shooting in the dark or I should say injecting in the dark. I am going down by 1/4 of xanax every 2 weeks which they say is the safest way to wean off and using gabapentin to help. Sometimes I think the gabapentin is making me more weak and shaky but not sure cause I always feel that way. It seems to help with my equilibrium and dizzy though and I am not sure why. Did u have any bad side effects from gabapentin? We’re u weak and shaky all the time in your legs before you were better? We’re you off balance? Sorry if I asked you this before as my brain is foggy. I am so glad you r better as it gives me hope if this is my issue. When and where are u speaking? Is there anything online I can look at? Big hugs and prayers again to you!!

[Ritchie1268 in reply to MelanieV]

Hi Melanie.

You're very welcome!

I'm in the UK which is why I believe the help wasn't available to come off the Oxycontin as the problems it causes are not as well known over here. When I told my then Dr I wanted off all the Oxycontin she actually said to me, "Hmmm, it maybe wise as all the other Dr's here are constantly having a go at me, wondering how you're still breathing due to the amount I have you on & we only now prescribe it to terminally ill cancer patients as it won't matter when they become addicted"

Reducing your Xanax very gradually is the best way to come off of it but, please don't rush it & take your time.

To be totally honest with you, I cannot remember what effects the Gabapentin had on me, I tried it, along with most other things for a while before the Oxycontin & it did nothing to help relieve the pain in my back, neither did the other drugs. It was only the Oxycontin that helped me at the time but only short term, hence the Dr constantly upping the dose I was on until I found out what it was.

My legs did become weak yes & walking down any steps or stairs they would constantly shake, this started around 3 years ago, along with bumping into door frames & losing my balance etc.

I fell in 2016 & dislocated, broke & fractured my shoulder.

This however I simply put down to the degenerative disc desease in 5 discs in my back & possible nerve damage it was causing.

My legs would constantly ache also which was horrible, along with restless legs which I used to think was a myth! The only ease I got was from a hot bath, but the aching would soon return.

After loads of blood tests many times before, that would always come back as "within range" my last Full blood count done by my new Dr in April last year showed B12 at 124, low Folate, Macrocytic Anemia & my Dr saying I had Pernicious Anemia.

I had never heard of any of these & all he said was I would need injections for the rest of my life.

Obviously hearing this & no explanation of what it was or how I came to have it, that's when I found this great place, joined the PA society & starting reading & finding out as much as I could about it.

Martyn Hooper's books are great.

It certainly all seems to add up now & make complete sence on how I was feeling & all the symptoms I was having etc, being all down to this one "Tiny little Vitamin" as some Dr's still call it!!

I still get leg aches occasionally but nowhere near as bad.

Depression they said I had, even though I disagreed has vanished, mood has improved loads & I actually enjoy doing things again, even though I soon get tired.

Migraines both very aggressive & silent ones have disappeared.

Central Sleep Apnoea where before being diagnosed I'd stop breathing in my sleep around 80 times per hour, which again, I now know opiates restrict breathing, has virtually now gone.

I'm still forgetful, do daft things at times like finding stuff in the fridge that don't belong there & can never remember putting them there, so it's either this, or I have a ghost 🤔

I still get burning tingling feet as if I've walked over hot coals most days even if my feet are cold, but it's not painful.

I still get pins & needles in my hands & fingers but I can live with these things as they all fail in comparison to how I was feeling before finally being diagnosed with PA & now regularly self injecting.

I'm by no means any Dr & have no qualifications in anything medical at all, all I know is how I now feel compared to how I did before the injections.

It can take a long time for some to see any improvements, but it was only through keeping a diary, monitoring how I felt & trying injections at various days apart, that I find I now need to SI every other day or all symptoms that had disappeared return.

I'm so pleased what I've said gives you hope, that's what everyone of us is here for.

Even though it's really hard what you're going through, keep going & try to stay positive & never let it beat you.

I'm hoping you see some improvements soon.

Take care x

[MelanieV in reply to Ritchie1268]

Ok thanks so much. I hope this will resolve whatever it is I have. I have put off the fancier test for Lyme because it costs $800.00. I don’t think I have it cause I live in Florida but I did go to Georgia and South Carolina before I got sick but had no indication of a tick bite. I am having a sibo test done soon as well as heavy metal testing done soon so maybe it will show something if it is not b12 deficiency, I don’t know. I wish you good health going forward and will keep u in my prayers!

[Ritchie1268 in reply to MelanieV]

Thank you Melanie & you too 🙏

[Green4me]

Hi I just read your post I'm feeling exactly the same just a few weeks after my B12 I was feeling so good then back to Square one and fast just like you say feels like the rugs been pulled from underneath. My GP has said I can have B12 every 10week but I still have to wait a few weeks I feel awful. Any advice welcome. I hope you got it sorted out.

[Steven64665y]

Buy b12 injectables online from Germany and do it yourself!