I need a plan

[Andypandy30]

I am all over the place with my treatment and need some hope from you all . I have been battling pa symptoms since jan 17 I also have hashimotos . My loading doses were given March 17 and all my symptoms came back by July 17 on the 3 monthly regime . After battling with doctor re treatment by symptoms she agreed to monthly injections! This was working better until July of this year when I received an injection which either wasn’t given properly ( I did not feel injection going in to muscle ) no benefit felt after so started to feel a decline until my next injection. All my symptoms came back mostly affecting my mobility and weakness in muscles , mood . I want to add that I was hopeful that I would take matters in to my own hands and self inject as I’d tried sprays etc and nothing else was working . I had such a fear of injecting and just wasnt confident in doing so. My vit d levels are also low so treating that with better you spray and will retest myself . I don’t know what my folate levels are but supplement with 400 mcg daily . Then 3 weeks ago I chanced upon a different doctor at my surgery who listened and prescribed loading doses again due to my symptoms . I was to receive 6 so in the first week I received one as there was no staff available to do it ! The second week I received 2 but only because I saw the doctor and said to him that no nurse had turned up ! He then gave it to me despite the staff telling me that a doctor can not give an injection ! Third week by then I should have received all 6 over 2 weeks but had been spread over 3 werks !!! ,I received one and the last one when I went up surgery on Friday I was told that the nurse had left !!!! I am battling this illness and trying to get a plan of treatment them when I get that I do t receive the treatment as prescribed due to staff shortages / saving money / covering each other’s backsides and lies !! I’m sick of it , sick of this illness and I need hope . Please tell me what I need to do to get better , if I get past this fear of self injections will I just start every other day even though iv has 5 loading doses spread over 3 weeks instead of 2 . I am only feeling slight improvement in mobility and muscle weakness btw as I’m not getting every other day as prescribed . I really don’t want to trust these people with my care anymore I want to get well , help and advise please

[Margaret-S]

Hi AndyPandy30. I'm so very sorry to hear of your awful situation. It is a horrible illness. Your medical team seem to be all over the place. It's a good job your doctor did give you the injection . Part of the problem is that far too many...in fact the majority...do not understand Pernicious Anaemia, and think it's just a case of an injection, and Hey Presto..everything is hunkydory. Unfortunately it's not the case as we are all to aware of. I bought a badge from the Pernicious Anaemia Society which says B12 for Life. It came on a card with the picture of a dog and it informs us that we only are suppose to get 4 injections a year, but if we took our dog to the Vet and they needed B12 injections they would get one every WEEK. It's not good enough. I have just had a call from my Health Centre Nurse asking if I could get today for my injection as they are very busy tomorrow.

Unfortunately Andy, I cannot help you in a practical way but I do know how you are feeling. I get angry at the Doctors too because the majority won't listen, and I was always under the impression that their aim in life was to have the patient's welfare uppermost in their hearts, and not the Government.

Please try and get the courage to self inject Andy. It surely would make a huge difference to your quality of life. After all, I read a while back that Martyn Hooper who started the Pernicious Anaemia Society has an injection every 2 days. I would if I could afford it.

Hang in there Andy and keep going. Easier said than done at times I know, but just think if you got a good few injections in you then it would surely lift you out of the desperate place you are in just now.

I think that as individuals we all need to bombard the Government with hundreds or thousands of letters asking for a complete change of guidelines. In fact, the guidelines are only just that, but the majority of Doctors etc behave as if they were cast in stone, when in fact they are only guidelines for the people who maybe get along fine on 3 monthly doses, and my way of thinking is that it gives plenty of leeway to treat more serious cases a lot more often. As one doctor who was a locum here last year said," I do wish that Doctors would listen to the patients rather than go by undependable blood tests etc". It would be great to have him as a permanent doctor. Unfortunately, like you, we have the ones here who sing out " we must stay in government guidelines " every time so no headway there.

Could you get someone to give you the injections Andy? It might be a help until you get the courage to do it yourself.

Wishing you all the very best and remember that although you probably feel very much alone, as I do too, we aren't really. Just keep in touch with the folks on here. There are many who can help you with all the information about blood tests etc. I'm not knowledgeable about those things. Gambit62administrator is very good.

Take care and hopefully hear good news from you soon. 🌞

[Andypandy30 in reply to Margaret-S]

Margaret u always give me the encouragement I need . Thank you for understanding . It’s so hard as it’s really causing me more stress by going up there and dealing with their bad practice only to find a nurse isn’t available then to be lied to that a doctor can’t give an injection when they can . ! So disheartening . I am also picking up every cold and virus going while sitting there waiting for the care I should be getting .so I feel a bit defeated but at least I know that the injections are my only way forward . I also think that I need my folate levels need checked but I know that will be a whole other saga with them ...,so annoyed .

[Margaret-S in reply to Andypandy30]

Glad to help in whatever way I can Andy. I feel so sorry for you. Only wish there was more I could do. The whole rotten attitude to this illness by people who should be doing everything they could to help is so upsetting and I must confess when reading how yourself and others are suffering so unnecessarily, well, it makes me very angry. JanD236 has given a good reply too with good advice. The beauty of this forum is that we can share our worst times and better times and we all can understand what each other is going through. I am so very thankful for everyone who shares their experiences and the encouragement each one gives.

Andy, we are all behind you, and together we all WILL make a difference. We've got to keep on. I will try again to write to our MP and see if he has better luck with the new minister of Health. The last one washed her hands of it completely.

Hopefully you will get help for yourself and your daughter. Please let us know how it goes.

Keep in touch here.

I got my injection this afternoon from a new nurse and it's the first painful one I've had. Feeling much better though. Wish it could last longer. 🌞

[Andypandy30 in reply to Margaret-S]

Thank you Margaret I appreciate the listening ear . Don’t think family or anyone else wants to hear about it as ‘ I look ok ‘ just complain a lot . Iv had a lot of helpful support re self injections and I know I am my own worst enemy as it is all about being in control of our own health . Maybe because I am in my own as re family support and I find it scary .i got a call to go to surgery tomorrow so will get one there . Just taking what I can get at the minute !but I know the stress of it all isn’t helping . Sorry to always be complaining Margaret and I am so worried about my daughter as she’s getting all the tingling in her fingers and toes like me .,glad to hear you got yours today and can feel a bit better for now . I understand that feeling and wanting it to last longer until the symptoms rear their ugly head again x

[Margaret-S in reply to Andypandy30]

Hope you feel better after injection tomorrow Andy. My family don't live near me and I also am very much on my own which doesn't help.

Hopefully you get your daughter checked out really soon.

Unfortunately tonight I am not feeling very well. Bad nausea and been sick. My tummy is grumbling too. Had a bad weekend with tummy and most of Sunday in bed. Wish I knew what was going on 😣 I know that pernicious anaemia can cause sickness and also there is cervical spondyloses in my neck which can do the same. Maybe it's just something I've eaten but whatever it is it's horrible.

I know what you mean about people thinking we look quite well!! It's very frustrating. Sometimes I just want to scream 😠

Let us know how you get on tomorrow. 🌞

[Andypandy30 in reply to Margaret-S]

I would get tummy trouble when my injection is due and as you’ve just had it I would say you’r body needed it . I would also feel nauseous due to heartburn Indigestion type symptoms but all settles a few days after jab . Just be gentle with yourself . Your body has got what it needs today so give it a few days and hopefully it will ease . I have a cold myself and have to keep telling myself to not be so hard on myself x

[Margaret-S in reply to Andypandy30]

Bless you for your kind reply Andy. I also have stomach problems . There is a lesion which behaves reasonably well if I watch my diet. It is certainly misbehaving today 😑 At least the nausea has cleared up greatly from this morning. I will take your advice and give it a few days...I'm quite good at resting 😀

Do hope your cold is better very quickly. And yes, don't be hard on yourself, just drink plenty and rest. Thankyou for your encouragement too Andy. Have a better day today and hopefully hear that you are a lot better. 🌞

[Ryaan in reply to Andypandy30]

I was writing a reply but don’t know where it went.

Yeah most of us been there when the Doctor doesn’t listen or know much about B12 and refuse to give you proper treatment. It gets you very angry but not much you can do, arguing with the doctor makes it worse. If you have the guidelines and papers and take them to the doctor and talk to them calmly there’s better chance.

The good news is that you can purchase B12 easily online and it’s not expensive. I remember I ordered last year 10x10 ampule boxes (100) injections from Versandapo de for roughly £55.

I don’t know how severe your phobia of needles is or if you’re able to overcome it but it’s not hard to learn to self inject in to your thigh. The first couple of times might be awkward but then becomes very easy.

I know there’s a pen you can buy to inject which has a very short needle so if you want to google that you should find it.

If you can get someone to inject you that would be a good thing but I say if you can’t all you feel is a pinch and I hope you can overcome your fear and be able to self inject.

Check out a few videos on YouTube and once you do 1 injection the rest become easy.

You shouldn’t push the injection needle in slowly (that will give you a lot of pain) you’re supposed to dart the needle and then inject quite slowly and it’s almost pain free.

I hope you find your way around things and wish you good luck and best of health.

I’ve also read on this forum that there’s PA Society online which you can join for a small fee £10 I think and they’re able to help you to get your treatment by writing to your doctor on your behalf but haven’t used them but know people do use them for help.

🙂

[JanD236]

A good reply from Margaret and I too would urge you to take matters into your own hands and self inject.

I’ve been doing it once a week for 2 years now and even now every time I don’t like the thought of doing it, get tense etc. However, by going oh so slowly it’s generally not painful (much less so than when the nurse does it quickly). If I stand back and rationalise it, it’s no more than an unpleasant 5 minutes in my week. That’s a fair exchange for feeling healthy and well!

So just like other things in life, a root canal filling for example, I’ve told myself that I’ve just got to get on with it and do it.

If you really can’t, then enlist a willing friend or relative. There’s no magic to giving an injection, it doesn’t need years of medical training. Just make sure that you and they have properly checked the files for the correct IM injection sites, needle size etc.

If you have neurological symptoms; for example, pins and needles in your hands or feet, I would inject every other day until no further improvement in those symptoms and then once every 2 months (or less depending on how you last). I don’t have any medical training but that regime would seem to be in line with published guidelines.

Good luck!

[Andypandy30 in reply to JanD236]

Thank you for your helpful reply . I am in awe of everyone who does this and I want to be in control . I even persuaded the doctor to continue on until symptoms ease by quoting the guidelines . But if there’s no one to give me the blasted thing what’s the point !!

[AndrewWiseman in reply to Andypandy30]

Hi Andy.

Sorry your feeling like this I was like that 9 months ago. My GP wouldn’t give me an injection. So I took things into my own hands.

What jan has said is true “a few minutes unpleasantness then you feel better”

I too had a fear of needles, I had a blood test once, passed out and wet myself.... looking back now it was funny! But on a serious note the first self injection is scary, take it slowly and in your own time.... inject the b12 slow and like others have said it doesn’t Hurt as much as the nurse jabbing and the plunging fast!!

Please please take this into your own hands the GP’s in the UK are very poor when it comes to PA!!

Hope you manage it and you feel better real soon

[Andypandy30 in reply to AndrewWiseman]

Thank you Andrew . It really is causing me more stress as i fought for more loading doses then when I eventually get prescribed them there is no one there to administer them ! So the treatment plan does not work effectively and my quality of life suffers . My little daughters birthday party I just got through at the weekend due to their incompetence and my body I might add . I didn’t want to stop the injections in the surgery also as I wouldn’t want them to know I’m thinking of self injections. And I probably shouldn’t use the vials they’ve given me on prescription.?

[AndrewWiseman in reply to Andypandy30]

Andy, I saw a private haematologist and was honest with him, he said I shouldn’t need to do that if I am getting the right treatment, although I said to him after having to get him to write a letter about it as my GP wouldn’t give me the injection I brought my own. I was honest with him. Although I haven’t told my GP! I used to get 6 b12’s a month until I was discharged. Now I don’t get them prescribed to me as often. Although I have a back supply from my prescriptions and also got some from Germany. There your vials which have been given to you by your GP so use them if you feel you need them!!

I presume your in the UK?

Andy

[Andypandy30 in reply to AndrewWiseman]

Yes I’m the uk . I am supposed to go today for injection but just had a cheeky phone call re the nurse shortage and that the practice manager is fully aware of the situation . They didn’t like that I said ‘ so what are you going to do about it ‘ ? I really don’t think I can face them but need a prescription for my cold . So I could self inject today and get my prescription tomorrow when I’m feeling better . ??

[AndrewWiseman in reply to Andypandy30]

If you can gain the courage to inject yourself - go for it. It’s very sad that the British health system can’t provide the simple assistance you need. If you are able to self inject you will feel much better. Just remember slow and steady if you do plenty of good videos on YouTube. Good luck pal!!

[Andypandy30 in reply to AndrewWiseman]

Thank you !

[deniseinmilden]

Hi Andy,

I'm really sorry for you - I hear how bad you are feeling.

I expect some of your low feeling and feeling like you don't want to have to cope would be helped by getting your levels of everything to where they should be. Each one of B12, folate, potassium and vitamin D deficiencies all make you feel depressed so compounded you are going to feel awful.

I know the NICE guidelines say every other day but in some places (Holland?) the loading doses are weekly and I personally think this is better as your body is expected to keep making an effort to work with what it's got rather than suddenly flooding it which seems to make it "lazy". This is a purely anecdotal comment but based on a lot of experience with animals (and does make sense). I wonder if the intensity of the loading dose treatment is one of the things that makes our autoimmune bodies (that "are looking for any excuse to break down") need very regular injections.

So the staggeringly incompetent set up in your local surgery may just be doing you a favour, as frustrating as it is. The other thing is that you can now press for more treatment for longer from them because they will know that they "messed up" and that will give you the chance to get your own jabs and find a way of getting them done.

Do you know anyone with Type 1 diabetes? Any nurses? Any professional carers? Any one associated with vets or livestock? Anyone else who is just willing to help?

I'd done thousands of animal injections but still hated the idea of injecting myself... Until I did it. And now (well over a thousand SI jabs later) I wouldn't want anyone else to do it for anything!! I've got to have my 'flu jab and hate the idea of a nurse doing it!

Fact - you can do it! I admire your facing up to it, knowing its better than how you feel now. You are perfectly capable of doing it, plus you are going to be much better than the nurses in your practice who don't care enough to turn up or even not lie to you - abysmal!

I know I beat on about it but a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron is important too.

Good luck with your daughter as well. Once you're better you will be more able to help her. x

[Andypandy30 in reply to deniseinmilden]

I replied further down to you Denise x

[Hidden]

Oh dear Andypandy30, this has to be very upsetting for you. My daughter had a similar problem, trying to get the surgery to put some priority onto her injections but their strict schedule of workloads wouldn't allow it, so after many months of regular misery one of the GP's saw sense and arranged for her to do it herself. I only had 2 load up doses done by the practice as I was offered the SI route straight away. For me that has been invaluable as I am now, through neurological side effects injecting every 3/4 days.

Doing it yourself, in respect of injections, isn't quite like decorating or washing up though is it, there is something in our brains which makes us resist pushing sharp implements into our thigh and I would think everyone of us who does it can think back to that first time on our own when the hand with needle took to shaking as it got nearer. It really needed a sharp talking to. I would also think everyone of us thought the same after it was over and done with 'Well that wasn't anything to worry about'. It comes to be second nature and now, getting the syringe, draw up needle, injection needle, spot plaster, medicated wipe and ampoule lined up then assembled takes a few seconds, ampoule opened, syringe charged and injection needle fitted is only a few seconds more. I find when the syringe draws up the beautiful dark cerise fluid I get a mental sigh which signifies that it is going to happen. I sit quiet, decide where I am going to do the deed then carefully insert the needle and slide it in. Slowly push the plunger and quickly withdraw putting a little circular plaster where the injection site was. Quick rub of the thigh muscle and clear up. I think it takes about 3 minutes in total.

If only you can get over that first time, because if you can do it once, you can do it a second time and if you can do it a second time you can make a habit of it. (Not my words by Dale Carnegie's) Seeing as you are offering to relieve their pressure can you not get the surgery nurses to tutor you though this very simple, but vitally important to you, process. Perhaps if they guided you through it a couple of times then let you do it with them watching you might find you can take charge of your own treatment for one of your problems. Both me and my daughter are so very pleased we don't have to go cap in hand to our surgery, like other relatives and friends do, we just know when we need one and get the kit out and do it.

[Andypandy30 in reply to Hidden]

Thank u for your advise and support . I don’t want to be this mess I am at the minute ! You have been helpful in telling me about your daughter as I too worry about my own ! I am not feeling confident about the whole business and I know I will need to be for her ! No chance of them showing me in the surgery unfortunately . They would hate that I was trying to help myself god forbid I’d get well !may I ask do I continue with getting what they give me but in the meantime monitor my symptoms and self inject when I need to . Iv noticed a slight improvement in my neurological symptoms and iv had 4 over a few weeks . I am due one today and if I didn’t go they would question why after all my fighting to get them x

[Hidden in reply to Andypandy30]

As another correspondent on this forum says I am not medically trained, just another sufferer from this condition. So anything I say is merely illustrating my own way of dealing with it.

I have had many discussions with our surgery as they completely ignored the neurological symptoms I was experiencing and in fact I only knew they were that after researching the condition for myself after starting with injections. The GP I see is a bright young man, however, although he can understand what is needed cannot go against the entrenched opinions of his bosses and follows the license conditions for hydroxocobalamin, letting me have just 5 ampoules a year. I get my additional supplies from Germany whilst the GP works on the practice to try to get things changed. I buy my own syringes and needles etc from a UK supplier and then do as I please, using the prescription supplied doses in accordance with the 12 week cycle. The interim ones are from my ex-Germany stock. (Just the same but a different label) Leaving the surgery in official ignorance is my preferred solution and so long as I can keep as free as possible of the sore tongue, cracked mouth corner, burning feet, electric shocks on hands and tingling fingers with tinnitus then what the GP doesn't know about isn't about to cause me any problems.

I also supply my daughter, if she asks, with the tackle. She had a problem with surgery supplied needles a few weeks ago which on inspection turned out to be blunt draw up needles 2 years out of date. At less than 3p/needle she can have as many as she wants from me, in fact I chewed her off as I gave her a years supply and said to ask when she ran out but she thought the surgery should supply her - not any more. One badly bruised thigh after a painful injection has been enough.

Not liking injections, you cannot be any worse than my sister-in-law who really is the whimp of the world and has to arrange for a particular nurse at her surgery to do her 12 week interval injections when the surgery is not open to the general public as she screams the place down even before the needle is anywhere near her. She knows what I think of that and if she was ever in a state where I had to do it for her I would give her a bash on the head to knock her out first, silly woman.

[Andypandy30 in reply to Hidden]

Very funny story and def making me feel better x

[Andypandy30]

Thank you so much Denise always so kind and encouraging also . I see you’ve got where I’m at . Not being able to see the wood for the trees and I know if I get well I can then help my little one ! It has made me think about what you said . I suppose I am waiting and wanting the same reaction my body and mind gave in April 17 when I first got loading doses . Best I felt in years !! I wanted this again but I very slowly am starting g to notice the effects . Iv only had 4 spread over 4 weeks and will get one today . So am hopeful now as I think I was just worried and overthinking that their poor duty of care would not give me the benefit I needed to get well ! Which I so want to . Also I do think I like routine and structure and not getting g that is putting me in a spin . So I will continue to take what I get Denise yes ? Also will look for a cheap vit test and folate . As I’m not sure the 400 mcg is enough . It’s is so hard to different between symptoms as they all overlap . Is there a particular brand of multivitamin u recommend . ? Sorry if I asked before . Blame the brain fog ! Also is it ok to take a multivitamin with folate alongside the one I have ? X

[Andypandy30 in reply to Andypandy30]

Also do I try to self inject now even though I’mgetting once a week at surgery . Like keep a log of my symptoms and see how much I need ? X

[deniseinmilden]

Hi!

I definitely agree it's probably good to keep going for their injections while they are offering them as you have fought so hard to get them and it's good to have it on your records - if you ever had to go to hospital for anything at least they would check.

Excellent plan to keep a record of your symptoms and inject when you feel you need to.

I have compared many multivitamin and mineral supplements and find the supermarket A-Z ones are as good as any and best value for money.

Yes, definitely take the folic acid in addition to the multivitamin and mineral supplement. As you say you might need several of the 400mcg ones to feel at your best.

Make sure you are getting plenty of foods and drinks with high levels of potassium, magnesium and iron in too - you can Google these to see what you might like.

If you were me I would be try the multivitamin and mineral supplement and one 400mcg tablet with extra B12 jabs until you have found that your improvement plateaus. Then try adding in another folic acid tablet so you take 2 a day for several days. If you improve then you might try adding more in gradually until your improvement plateaus again.

By then you should be feeling much better. Come back to us if you have any problems or other symptoms.

Take it gradually but keep notes so that you can look back and compare how you were.

Go for it! 😎 x

[Wowo23]

I feel so badly for you. I know how you feel about self injecting(me too) but wondering if you know a nurse, a friend or family member that can give them to you. I'm very lucky that my doc listens about my PA and will prescribe injectables I ask for. I now inject twice a week. I'm actually getting ready to go every other day because I have 2 days a week where I don't feel great. I hope your doc agrees and orders them for you, the amount you need and that someone can give them to you. They taught my 17 yr old daughter to give them to me. Best of luck

[Andypandy30 in reply to Wowo23]

Thank you . I received it today at surgery and have been so spaced out and unsure if my feet and body I had to really concentrate to get there . I also had to wait an hour feeling so horrible as iv a cold also . I didn’t want to leave until I got it tho . The same story re getting the next one .i won’t be able to get it until next week and I am not waiting a full week again as it’s tii long for me and I suffer . So preparing for self injecting ! X