Personal Story

Amanda

I first noticed my symptoms when I was 28 years old. I was working full time as a rotational physiotherapist in a hospital, enjoying an active social life. I remember feeling really tired in the evenings. I couldn’t watch a film to the end. My friends would joke and place bets at what time I would fall asleep during nights out. I noticed fatigue creeping into the daytime, my eyelids would feel heavy and my body sluggish. I was frequently constipated. I visited the GP with my symptoms. I had bloods taken and was informed I was anaemic. My B12 levels were just below 200 but they didn’t know why. I was provided with a course of iron tablets which I stopped as my constipation worsened. At the time I was also questioned about my mood and whether I could be depressed. I remember feeling confused. I didn’t think I was depressed but maybe I was. I decided to take the advice of graded exercise and healthy eating to boost my mood. Unfortunately over the next 12-18 months my symptoms worsened. I became short of breath climbing stairs at work, intermittent heart palpitations and tripping over my feet. I had difficulty with word finding which could be embarrassing. I also felt emotional, with periods of irritability and low mood. I don’t remember telling anyone about my symptoms. I was worried I had symptoms of multiple sclerosis and was fearful of returning to the GP for this reason.

When I was 30 I met a doctor socially and we talked about the small patches of depigmentation that were appearing on my skin. The doctor told me it was vitiligo, an autoimmune disease which could be linked to other autoimmune diseases such as PA. It was a lightbulb moment and I am eternally grateful to them for their advice. I went to the GP and demanded further investigations. The locum GP did not have much knowledge around PA but organised all the necessary investigations. I was positive for the antibodies related to PA. My B12 levels from memory were 98 when I was diagnosed and I was started on the loading doses of B12 and folic acid. I found the injections caused small bumps/blocked follicles to appear on my skin but after a few months this improved. I was relieved that there was treatment and I started to feel alive again.

Once on the regime of 12 weekly injections I found I was struggling with my symptoms reappearing by week 9/10. I went back to the GP who tested my blood and found high B12 levels, and said I didn’t need B12 anymore. I was distraught and demanded a second opinion. By now I had a lot more knowledge, thanks to the PAS website and patient forums. The GP contacted a local haematologist who advised that B12 injections can be given from 8 weeks if symptoms reappear. Also to ignore blood B12 levels as these would appear high but treatment should not be discontinued. So with great relief it was written into my medical records that I could have injections every 10 weeks. I still notice increased fatigue, reduced concentration and struggle with word finding from about 8 weeks after my injections. I can’t leave it longer than 10 weeks without experiencing difficulties at work. My work colleagues notice these changes, they recognise when I am struggling, and ask if my B12 injections are due. I occasionally self-inject with B12 purchased from Europe if I am struggling between injections. I now have a regime that works for me.

So I am now 40 years old and since being diagnosed I have met and married my husband and have 2 small children. I have been promoted at work and still work almost full time. I have just completed a MSc. Life is busy and I try not to let PA stop me. I do get tired more easily than I feel I should and have a few weeks where I am super productive with ‘normal’ energy levels. At times I wish I didn’t have PA, and didn’t have to have injections to feel ‘normal’, but it’s part of who I am and I know it can’t be changed.

My advice to other patients is become an expert on PA. Use the resources from PAS to increase your knowledge. Share that knowledge with friends, family and healthcare professionals. Demand investigations and actions from your GP, and request second opinions if you are unhappy with the outcome. The haematologist advice was crucial to my journey, and I hope that in the future guidance is available for GPs, in relation to the diagnosis and treatment of PA.