!!Newly Diagnosed!! What is causing it and how long after injections until I feel better?
Posted , 2 users are following.
Hi Everyone!
This is my first ever posting so I'm super nervous. I have recently been diagnosed with pernicious anaemia, I have started my loading doses and have had 1 so far, I was wondering how many loading doses it took you guys until you felt better (more energy etc.)?
Also, my vitamin D levels are through the floor, does anyone know what causes very low Vit D levels and pernicious anaemia?
Lastly (sorry for the long post), is there anything else you could recommend to help to manage this condition?
Thankyou!
1 like, 3 replies
clivealive molly30314
Posted
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
I am not a medically trained person but have had P.A. for more than 45 years and am over 75
auntiebeanie molly30314
Posted
Hi Molly I was diagnosed in my late 20's with PA, that was nearly 30 years ago. for me it was the tiredness, which GP put down initially to being a working mum with two young children. I had to have an injection every day for a week, then one every week for six weeks, then three monthly. I started to feel better after a few weeks. In regards to Vit D most of us are deficient, just remember after initial course to have a maintenance dose. I use a spray called D3 which you can get from Amazon. I know when my injection is due a I usually start to feel extremely tired and forgetful around two weeks before. To manage B12, just live your life as normal and once you are in a cycle of your top ups every 3 months, try to slow down in the last two weeks before your injection is due. I find if i have a lot on after work, it drains me.
clivealive auntiebeanie
Posted
Do you ever have your Folate level checked or supplement with Folic Acid?
Folate and the B12 you are having injected help your iron to make red blood cells and to function properly in your body.
If you are having a return of neurological symptoms in the run up to your next injection I suggest that you ask your doctor to increase them to every eight weeks in accordance with the N.I.C.E Guidelines on the treatment of Vitamin B12/Folate deficiencies.
After much argument I was able to persuade my "one size fits all" doctor who previously refused to vary my prescription to increase my injections frequency. Hopefully yours will be more amenable.
I am not a medically trained person but have had P.A. for 46 years.
I wish you well