I have Pernicious anaemia..but am allergic to injections

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i was diagnosed last summer and have been having injections since then..five loading doses in aug and every three months since then, it took until oct/nov to feel better..although i felt much better generally i still do still not have enough energy to say.. go to a cycle (annoying) anyway, since getting injections i have also developed acne mainly on my back but sometiems on my face, after googeling, i think i may be allergic  to the injections, my doctor agreed that *could* be the case and sent me for a blood test..i am awaiting the results..  If i am allergic what will happen now? Will they stopo my injections-this was threatned but i protested saying how will i absorbe the vitamin through tablets alone... and the doctor agreed but said nothing else..is anyone else in this situation please? (I also have an underactive thyroid.)

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  • Posted

    Hopefully your acne is as a result of the B12 "doing its job" rather than the ingredients of the fluid itself and it will clear up in time.

    I'm not medically trained but have has P.A. for 45 years and can only suggest the following:

    If you are in the U.K. and your injections are hydroxocobamalin ask your doctor to try you on cyanocobamalin. The reason I suggest this is that I was started on cyano in 1972 and when hydrox was introduced in the mid 1980s I had an allergic reaction to it (including acne) and so swapped back and am still having it today. The "downside" of this is that cyano needs to be injected every four weeks instead of the twelve weeks you are having with the hydrox.

    I see you are having B12 injections every three months.  If you are having neurological symptoms they should be every eight weeks (highlighted) as follows:

    Treatment of cobalamin deficiency

    "Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

    Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks, then every three months. 

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months".

    My other suggestion is that you see your local pharmacist and ask his/.her help with the acne itself as they are probably more knowlegeable about treating it than doctors.

    Your B12 injections are for the rest of your life which will be greatly shortened if they are stopped. Patches, tablets, sprays or voodoo will be no use for P.A.

    I'm sorry I cannot say definitely that your acne will clear up over time but hopefully it will.

    Of course the alternative to B12 injections would be what I was "threatened" with in 1972 - having to eat raw liver three times a day - I opted for the injections and I'm still "clivealive" at 75. biggrin

    I wish you well.

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    • Posted

      Thanks  Clive, ..I think it be dead if I had to eat raw liver! Ugh!  Thank god for injections! I shall ask about the different types of B12 that might be worth a try...I live between Wales and Scotland so I get injections in both countries il have to ask both surgeries what B12 they use! ..it does slightly complicate things! ..as I said below, I've been on injections for mine months now, but the acne hasn't gone in all that time, it hasn't really got any worse, it's just stated the same.,it is pretty nasty and painful..but thanks I shall ask about the types of B12..as I said below I currently have breathing problems..not related to the b12...I had an injections a few days ago..and still couldn't breath..so I await more test results..oh the joys of ill health! I hope you, yourself stay well!..or as well as you can with p.a! smile

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  • Posted

    Hi, those spots are horrible- and painful- aren't they?! I had them too - on my face and scalp and ears. They are thought to be as a result of detoxing homocysteine from the body. They do eventually clear up. Advice is normally to use water to rinse away regularly. I do still get an occasional spot - but nothing as horrific as those first few months.

    I was very consistent with my cleaning regime- which I guess would be harder on your back. Personally I wouldn't use anything to stop it happening- it is something the body is getting rid of and needs to be rid of.

    Did you have your homocysteine levels tested? Mine were 13 when I started and after B12 and folate, dropped to 6. You need it to be between 6-8. See if you can get your doctor to test this and also methylmalonic acid. These look at your B12 on a cellular level - testing for B12 once you have been on injections is really a waste of time so these other tests are great. Likely your doctor won't know what they are. I had mine done privately.

    You definitely need more injections as Clivealive stated. If you have neurological symptoms like pain in your legs, then injections should have continued on alternate days until no further improvement is seen and then 8 weekly. Or more if you can convince your dr you need them. A lot of us self inject. Look at the Healthunlocked forum for good advice for both the PA and thyroid.

    I have hashimotos and take NDT- that was when I finally stopped feeling soooo tired. Drs often undertreat thyroid conditions too.

    Really, you need to educate yourself, read lots.

    I'll stop there. Hopefully this is if help to you. I was where you are two years ago. You'll get there- but you really need to be informed. Ask the dr for print outs of all your tests for you to see for yourself.

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    • Posted

       hi thanks for your response, I have no neuro symptoms, and manage on my three monthly injections fine..apart from not having energy to cycle, but I think quite frankly I'm just unfit now! I didn't have enough energy until October/Nov, but since then I'm ok..I don't think my bloods have been cheeked for the other thigns you say..I shall have another look at my results..but I don't think so...the spots are the least of my worries right now as I was having breathing difficulties over the last couple of weeks, it got worse and worse, I out it down to needing an injection..I got my injection..they agreed I'd always get an injection..but I still couldn't breath properly, I've now had a chest X-Ray ..I had an ecg but that came back fine...a few folk ..friends on f.b have suggested to me I may be dehydrated ...I've been drinking more water and I do feel a bit better..still breathing heavily..but that might be the problem..something so simple! I shall await the results of the X-Ray anyway to see...but drink more water people!...incidently the first question the doc asked was soemthing about eating and drinking, I forget exactly the question, but I just said yes eating, drinking fine...but I thought I was didn't i? You don't realise sometiems what harm you are doing yourself!..like I said I shall await to see,.needless to say the acne took a back burner when I said I couldn't breath so I still have to try and sort that...I am aware that people have reported acne as like a detox of your system after the injections..but I've been on them for 9 months now, and it doesn't get any better..surely that's a bit too long?! ...who knows maybe it's also due to deydration as well! ..although I'm pretty sure I've not been dehydrated for 9 months..or I'd be dead! 

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