Glover'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: Glover's Story

Postby Glover » Wed Dec 21, 2011 8:17 pm

Dad is going to go and have another chat with his GP so will see what happens

In the meantime, I am feeling a bit rubbish. I am having fortnightly injections - am now doing them myself but Doc will only prescribe me one dose each fortnight, so the position I am in at the moment is...

Officially due to have next dose Dec 27th
Christmas is coming and based on history I suspect that I will start to feel bad about Christmas Eve
Do I just go for it and give myself the injection early and then have to wait 16days + but enjoy the Christmas break - or do I stick to the timescales?

:-(

When i say I am feeling rubbish, sympton wise I am ok at the moment, but my ability (or otherwise) to have a nice Christmas is lurking in the back of my mind getting me down

Sorry to moan, its such a little thing really and I know many of you guys have a far worse time, but its getting me down and I know that at least you guys understand
Glover
 
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Location: Somerset

Re: Glover's Story

Postby kimks mom » Wed Dec 21, 2011 8:45 pm

You could order hydroxocobalamin online as many of our members have done. And you probably would feel better if you could increase injections to weekly.
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: Glover's Story

Postby BeeNumber12 » Wed Dec 21, 2011 8:55 pm

Hi. I know what you mean about the dread of a crash, just when you want to be bright -Christmas. Stress also depletes the b12, so you have a double quandry, sort of! Don't worry at all about having a moan -this is important to you and that is what matters. If your symptoms list (which is including _everything_) shows in black and white when you decline and what symptoms (even new ones) ebb and flow, then take that to your doc and show them proof of what happens to you. Be sure to especially include the neurological(nerve troubles) symptoms.

If the doc won't budge on more frequency, maybe think about ordering online b12 injectable serum to supplement what you now inject. I hope your father is able to persuade his own doctor in his favor. Have a good Christmas.

Dorothy
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: Glover's Story

Postby anotherwithpa » Wed Dec 21, 2011 9:16 pm

I agree, just get your own supply, it just means you have the freedom to add one when it counts, funny enough cause I have lots I never inject unless I realy must, as in the end I still do not like it....and will postpone for as long as my body will let me...but the freedom of knowing you can inject when ever you need is so worth it! Marre.
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Re: Glover's Story

Postby Poacher » Wed Dec 21, 2011 9:39 pm

I completely agree with the previous comments - get some supplies of your own and then you won't have the problem.

I generally inject hydroxo every 4 weeks but always inject sooner rather than later.
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Re: Glover's Story

Postby Glover » Thu Dec 22, 2011 6:05 pm

You are all totally correct, I dont know why I am being such a wuss about it - I am not like this in any other part of my life!
Just ordered syringes and Hydro - actions not words :-)

Feel better just having done it

Self injecting doesnt bother me at all so I am just going to take control and get on with it :D

Merry Christmas all, and Thank You SO MUCH for the support.

I get married in Feb and I actually feel really confident that I can manage everything now, including the honeymoon :wink:
Glover
 
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Location: Somerset

Re: Glover's Story

Postby anotherwithpa » Thu Dec 22, 2011 6:36 pm

Re:"Just ordered syringes and Hydro", brilliant, you'll be fine and in my memory the honey moon is the best bit :lol: !
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Re: Glover's Story

Postby Poacher » Thu Dec 22, 2011 8:22 pm

Well done :clap: . You won't regret it.
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Re: Glover's Story

Postby Glover » Thu Jan 24, 2013 3:24 pm

Update

Hi All

I keep checking back to this forum, seeing what people have to say and learning new things. Searching for weird symptons and finding out I'm not alone - that sort of thing! But I havent been posting becuase I have been feeling pretty good, when I thought to myself I should tell people that - it might make someone feel better too!

As I said on here, I decided to take the plunge and self inject back before XMas 2011. Since then, I inject once or twice a week and as a result of that and slightly reducing my working week - I have a life back :-)

Dont get me wrong, I have crashes, I get tired and I have to be careful what I am doing, eating etc to keep thing in balance - but generally things are much more in control

I visit my (lovely) GP now and then just to keep a check on things, and I am ok
He checked what I have delivered from GoldPharma and he is happy with that. He gave me a letter to have in my suitcase for travelling to explain why I carry needles etc

I generally feel much better and wanted to let people know that there can be light at the end of the tunnel!

I just have two questions at the moment
1. Why do my poor thighs bleed like so and so sometimes and not at all others
2. Does the fact that so many of us self-treat mean that the NHS dont get a true picture of the issue/requirement for B12?

thanks all
Glover
Glover
 
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Location: Somerset

Re: Glover's Story

Postby kimks mom » Thu Jan 24, 2013 3:51 pm

Hi Glover and welcome back,

Thank you for the update. You are correct because your post will encourage others to consider self-injection when treatment is denied to them.

I don't know why bleeding occurs when you inject in the thighs..quite a few members have had a problem with it. It would happen occasionally with my daughter and finally she had one leg that became very resistant to injections. She switched to subcutaneous injections and hasn't had a problem since.

It is certain the NHS doesn't have a true picture of the B12 requirement..we still have doctors who refuse to diagnose a B12 deficiency. Self-injecting will certainly add to the confusion about the need for hydroxo.

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: Glover's Story

Postby BeeNumber12 » Fri Jan 25, 2013 1:57 am

"Why do my poor thighs bleed like so and so sometimes and not at all others?"

Hello Glover,
I would get the bleeding on occasion. And bruising. I suspect the blood erupts from a small blood vessel we hit either going into the muscle or coming back out. The bruising was so bad on my left leg, I switched to using the subcutaneous method. Just into the fat with a short needle.

Your doctor sounds helpful and I am glad to read of that. If only we had more. :D Thank you for posting to say you feel better. It definitely helps others to know that there is hope (if they get enough B12 .)
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: Glover's Story

Postby Vix » Fri Jan 25, 2013 11:13 am

Hi Glover
I always bled and bruised in my thighs even when subcut. My partner now does all my jabs in my bottom so only very occasional bleeding and bruising now.
Vx
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Re: Glover's Story

Postby JDee » Sat Jan 26, 2013 7:36 pm

Both of my parents were diagnosed with PA. Mum is on 2 monthly injections and relatively OK. Dad progressed to dementia and sadly died 14/2/13. Despite my own levels being 'normal' I have some symptoms. Jac.
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Re: Glover's Story

Postby Glover » Thu Dec 12, 2013 5:17 pm

Hi all

Oooh fancy new website 8-)

I continue to do well despite my amazing Dr having left my Practice :pale:

Generally I keep things ticking along doing my own injections however I am hoping you can help me out with all your expertise!

I appear to have a kidney infection. My new GP has prescribed me Nitrofurantoin. When I got home and looked at the leaflet it advises special care if you have a B12 deficiency. Called Dr who said she didn't have a problem with me taking it but if I wanted something else she would prescribe it. I said I just don't want to I upset the good balance I seem to have at the moment.

She prescribed me Amoxicillin instead. Had a look on here and I am just a bit lost in all the info.
Is this better or worse?
Is there a GOOD anti biotic choice?

Obviously I need to smash the kidney infection, but don't want to crash as a result :?

All help gratefully received
Glover
 
Posts: 17
Joined: Thu Sep 29, 2011 3:13 pm
Location: Somerset

Re: Glover's Story

Postby kimks mom » Thu Dec 12, 2013 6:49 pm

Hi Glover,

Welcome back and glad to read you are doing well except for the kidney infection. My daughter was put on Nitrofurantoin for a severe UTI. She developed a lot of pain in her legs and when I looked up the side effects and told her, she had her doctor change the prescription.

I don't think there is any interaction between amoxicillin and B12. We have a list on the forum of drugs that do interfere with b12 and nitrofurantoin is mentioned. This is the link:


viewtopic.php?f=6&t=10173

Hopefully the amoxicillin will work for you and clear up the infection.

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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