Hi everyone, just thought I'd put my recent findings on here having decided to start self-injecting from January 2015 (it might be useful to someone somewhere)
I got diagnosed June 2013 with PA and (being afraid of needles) tried to treat myself using sublinguals (methyl) and had no improvement, I finally gave in and went last January (2014) to have the loading injections (only three injections a week for two weeks despite me having a lot of neuro symptoms - I hadn't found this forum then and didn't know I should have had more and my GP certainly wasn't forthcoming) - I then went on to one injection every three months and still felt I was getting worse... long story short, lots of arguments and standoffs with both GP and nurses and all refusing more frequent injections and no blood tests - not even to test folate, vit D etc.
So, after a lot of research and nerves I ordered my own cyano from Goldpharma and needles from Medisave and my partner thankfully was happy to administer the jabs after watching several you tubes vids on how to do IMI's, how to open the ampoules etc - he is fantastic and I'm very grateful that he will do this for me - sometimes it stings more than others, but he is as good if not better than the nurse was - and the relief of being in control of it all does a lot for my mind set.
So, I have been having two injections (IM upper arm) every week since the first week in January, a lot of the symptoms have lessened or gone, some like Tinnitus are still there, my digestion has calmed down a lot, and I now go to Zumba twice a week and a power walk once a week (would have been unthinkable before) and my concentration is better - (I have been taking a multi vit and a B complex too) - my sense of taste and smell has improved (that was weird, one day half of my taste buds seemed to work, the sour ones, whilst the others didn't, food tasted awful but as the week went on they all came back) and so I reached a point at the end of March where I felt I could reduce it to one injection a week and so far that has been ok - in short (and sorry this has turned out so long!) I needed THREE MONTHS of loading injections before I got to the point of improvement where I could reduce it to one a week, not one every THREE MONTHS!! Maybe this was how it should have been all along and someone made a typo!! LOLOL!!
Anyway, that is just my experience and I know it will be different for everyone, but I thought posting this might help those of you who really feel they are not getting enough from their quarterly jabs that NO, it may not be just in your head after all and your symptoms should really improve when you get the dosage right!
Ok, well I'm off to fight another battle now, I have all the symptoms of Hashimotos Hypothyroid and a GP who won't even send me for a thyroid screen - NEXT!!!!
Have a great week lovely people X