Ceri's Story

Post your experiences of Pernicious Anaemia here. No two people with PA are the same, and sharing your experiences and reading others' may help you through this.

Moderators: Missy, hampster, martyn, coryad, BeeNumber12, kimks mom, Vix, AndreaM, japatchett

Re: Ceri's Story

Postby kimks mom » Wed May 16, 2012 1:44 am

Hi Ceri,

I don't know how often you intend on injecting but as you were using methylcobalamin I am presuming you didn't run into any problems with potassium levels. If you are unsure, then just halve the amount of the 1000 mcg and inject 500 mcg. Make sure you enrich your diet with foods that are high in potassium and you will be just fine. I don't recall reading any stories from our members about low potassium levels who are injecting methylcobalamin every day, some who inject twice a day.

The concern about hypokalemia is with initial intense treatment as in loading doses for the first time. You have already been injecting so I don't see a problem with potassium levels dropping when you begin injecting hydroxocobalamin.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
kimks mom
 
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Re: Ceri's Story

Postby Hayedwards » Fri May 18, 2012 4:55 pm

Thanks guys. I don't have any of the symptoms associated with low pottasium so hopefully I should be okay...

I've stopped injecting the methylcobalamin and will start when the hydroxycobalamin comes in....how often should I inject? I'm thinking of doing something like every other day till I feel better and then stopping till I start to feel rubbish again and then doing the same again....almost like loading doses then topping up....like I would have had from the doctors only this time I'm more in control of it and won't have to wait ages between injections when I start to feel really ill again. It scares me a bit that I'm doing this all myself without medical supervision (ie the GP's at my doctors surgery don't even think I need injections, they say my B12 levels are marginal and I can't have any more injections if they are above 180 on my next blood test...also I haven't tested positive for intrinsic factor antibody....they don't feel my problem is pernicious anaemia, but they don't know what is....I've been tested for EVERYTHING several times over and the only illness my symptoms are consistent with is pernicious anaemia (or B12 deficiency) and the only test that ever showed anything abnormal was my B12 test (154) and I was also slightly anaemic and very slighly low in folate....When I get ill with this I get REALLY ill and it has become progressively worse over the last year and a half...the only time it was better was when I had my B12 loading doses and that lasted 2 and a half months. When I had my first 3 montly injection it did nothing (is that normal for PA?) also the methyl I was injecting did nothing....which has confused me because it's B12....so I'm now worried that the hydroxy won't work and that I have another illness and it's not PA (but I have no idea what?). I'm so sick of being ill.

Does anyone else feel as though they are completely off on another planet when their PA is bad...like their mind is racing and feel as though they are going mad? It's quite scary....please tell me I'm not the only one.
Hayedwards
 
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Re: Ceri's Story

Postby BeeNumber12 » Fri May 18, 2012 5:47 pm

Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: Ceri's Story

Postby Hayedwards » Sat May 19, 2012 8:33 am

Thanks Dorothy and Andrea....

That makes a lot of sense....when I first went on the loading doses after feeling so unwell for such a long time, I didn't notice much effect straight away....then I began to notice some improvements ie my hair was no longer falling out in the shower, my lips cleared up, my hands were no longer dry and I had a bit more energy, I also had less memory problems and less of a drunk wierd retarded feeling in my brain....however I was still dizzy and still had a lot of angiodema and didn't feel completely well at all....the dizziness was still quite bad....but when I added folic acid....within a couple of days it was almost like I'd had a miraculous recovery. I felt great and hardly had any symptoms at all.

I was still taking folic acid when i had my first 3 monthly injection though? And I still take it now so would have been on it when I was injecting the methylcobalamin. Maybe hydroxy will be better for me as you say when you take folic acid with it it converts it to methyl and then another form of B12 gets released into your system aswell....so maybe those are the ingredients I need to get well.....perhaps methyl works for some and not others and hydroxy works better for some and not others and maybe I'm one of the people who needs a lot of it. So I'm really hoping this is the answer. I just don't want my life to have been a waste where all I really did was battle an illness I couldn't get better from, drag myself into work like a zombie, and drag myself out socially occasionally feeling horrendous.

I'm also taking iron supplements, magnesium, vitamin C, and a probiotic....I'm beginning to rattle when I walk!

I've also increased the amount of B12 and folilc acid in my diet....as I've not had a confirmed diagnosed of PA it could be that I can absorb some of it....and that I could just be a poor absorber (for whatever reason) rather than not being able to absorb it at all...I also take B12 tablets to try and get my body absorbing as much as possible naturally....the rest I'm doing with injections....I really think I'm probably going to need injections for life though as there has got to be a real problem with absorbtion for me to have become so ill with it and for my B12 levels to have been that low.
Hayedwards
 
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Location: England

Re: Ceri's Story

Postby Hayedwards » Sat May 19, 2012 11:20 am

Thanks Andrea.

This illness has really been a horrendous thing to go through and has ruined great chunks of my life....but I'm still young and hopefully if I can get it treated/managed properly I can go on to have a good life....maybe my 30's will be what my 20's could never be due to illness. Who knows?
Hayedwards
 
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Re: Ceri's Story

Postby kimks mom » Sun May 20, 2012 1:47 am

Good luck, Ceri. You are not alone in thinking your 30's will be what your 20's should have been except for this horrid disease. My daughter often comments on how she lost years to PA..years that she can't remember.

Fingers crossed the hydroxo works for you.


Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
kimks mom
 
Posts: 5760
Joined: Thu Jan 01, 1970 12:00 am
Location: GTA, Ontario Canada

Re: Ceri's Story

Postby Hayedwards » Sun May 20, 2012 2:38 pm

Thanks Pat.

How old was your daughter when she became ill and got diagnosed....and did she make a full recovery? Hope she is okay now.
Hayedwards
 
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Location: England

Re: Ceri's Story

Postby kimks mom » Sun May 20, 2012 3:19 pm

Kim was 27 years old when diagnosed but had been sick for two years prior to the diagnosis. Following diagnosis, she just merely existed for the next 11 years until she found the old anaemia society forum in 2005, the forerunner to the PAS.

The maintenance dosage for cyanocobalamin was monthly injections. Kim's doctor refused to increase injections. So it was a relief for Kim when she found the forum and was advised to learn how to self-inject. Her doctor reluctantly agreed to have a nurse teach her and Kim has never looked back. She has had ups and downs over the last 7 years but this had more to do with finding the correct serum and regime that works for her. Two years ago she tried methylcobalamin and crashed after 2 months of injections...methyl just didn't work for her. She went back on cyano and with the addition of dibencozide sublingual (adenosylcobalamin) managed to get better but it took 4 months. She doesn't use dibencozide now, seems to be injecting now just twice a week and is managing fine.

Ever since the crash from methyl and going on subcutaneous injections, she has had no problems relating to PA. She is back using the gym 3 to 4 times a week and best of all she has no symptoms..I think this is a close to a full recovery she will have. She has limitations but they are small, perhaps not for her as she would like to be able to work out at the gym 5 times a week. This she can't do.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
kimks mom
 
Posts: 5760
Joined: Thu Jan 01, 1970 12:00 am
Location: GTA, Ontario Canada

Re: Ceri's Story

Postby Hayedwards » Sun May 20, 2012 5:23 pm

That's really reassuring to know....I was so worried when the methyl didn't seem to work, but hopefully the hydroxy with the folic acid will....she must be feeling well if she goes to the gym 3-4 times a week....plenty of people even without pernicious anaemia would think that was really good!!! At the mo I think if I spent as much as 5 minutes in a gym I'd collapse! So you've really given me a lot of hope.

I was late teens when I began having some symptoms (although I'm not sure if this was PA or something else because I did have big long periods of being fine, it may be that I had a virus that knocked me about ie glandular fever, when people get ill with everything going and have periods of low energy for a long time after). Then my symptoms of PA really started in full swing when I was coming up 25.....I was really bad for just over a year....the next 2 and a half years I seemed to manage my symptoms and wasn't as bad (how I just don't know)....then towards the end of 2010 it all kicked off again...I got really ill, classic PA symptoms and got progressively worse throughout 2011. Got better with loading doses for 2 and a half months then went downhill again, with a slight improvement for about a week when I had my injection....then really badly downhill after that (this was about a month and a half ago).
Hayedwards
 
Posts: 96
Joined: Wed Nov 23, 2011 9:44 am
Location: England

Re: Ceri's Story

Postby kimks mom » Sun May 20, 2012 11:57 pm

It will get better Ceri. I can't promise you a smooth road because it sure is one bumpy road but eventually some of the bumps smooth out.

Once you find out what works best for you, then stay with it. It takes time to find the right regime and so it means experimentation. A vitamin, mineral and enzyme panel can be helpful as it will indicate if you are low in any other vitamins, minerals or even enzymes.

In a perfect world no one should have to experiment with their health. However having PA makes it necessary.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
kimks mom
 
Posts: 5760
Joined: Thu Jan 01, 1970 12:00 am
Location: GTA, Ontario Canada

Re: Ceri's Story

Postby Hayedwards » Mon May 21, 2012 11:33 am

Thanks. My hydroxycobalamin has arrived today...so I can start my recovery (again).
Hayedwards
 
Posts: 96
Joined: Wed Nov 23, 2011 9:44 am
Location: England

Re: Ceri's Story

Postby Hayedwards » Tue May 22, 2012 6:22 pm

Is it safe to inject 1ml of hydroxycobalamin each day...I've injected my first one today (from Goldpharma). At the moment I still feel absolutely awful....not functioning, mind is racing, dizzy, yellow skin, diahorrea, soreness in hands, swollen tongue, foggy headed, no energy. I have hope, but the way I'm feeling now I can't imagine being well...normal....again.
Hayedwards
 
Posts: 96
Joined: Wed Nov 23, 2011 9:44 am
Location: England

Re: Ceri's Story

Postby Hayedwards » Wed May 23, 2012 6:26 pm

Thanks Andrea!!!

I think that's what I'll do....B12 wise I had my loading doses at the end of December beginning of January. Didn't kick in straight away but started noticing improvements after my 4th one and then a week after my final loading dose I felt fantastic, this continued for 2 and a half months. Then 2 weeks before my first 3 monthly injection I noticed my symptoms gradually coming back...then one week before I was back to square one. Had my injection at the beginning of April and only had mild improvement for about a week. Then got really bad again. Beginning of May I was worse than I'd ever been and had my infusion in Bridgend and self injected methylcobalamin for a week...but noticed no improvement at all (I was also taking folic acid). Left it for a week and then yesterday had my first self administered hydroxycobalamin....

What I might do, is take a potassium supplement, stop injecting for now then after the weekend give myself loading doses on Monday, Wednesday and Friday and do the same the following week....whilst taking folic acid and iron....then see how I feel in a month and decide what to do....

If you could overdose all the celebrities would all be ill wouldn't they? They inject all the time and have infusions and they haven't even got PA. However I have read that symptoms of B12 toxicitiy are similar to symptoms of PA....so I wouldn't know which I had and that is worrying me. Some say you can overdose and some say you can't....hard to know what to think.....
Hayedwards
 
Posts: 96
Joined: Wed Nov 23, 2011 9:44 am
Location: England

Re: Ceri's Story

Postby BeeNumber12 » Wed May 23, 2012 10:45 pm

Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
BeeNumber12
 
Posts: 2939
Joined: Thu Dec 24, 2009 11:52 pm
Location: U.S.A.

Re: Ceri's Story

Postby kimks mom » Thu May 24, 2012 1:28 am

Hi Ceri,

Have a read of the topic below, it may reassure you that you can't really overdose on B12 or take too much:

viewtopic.php?f=2&t=11417

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
kimks mom
 
Posts: 5760
Joined: Thu Jan 01, 1970 12:00 am
Location: GTA, Ontario Canada

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