Steve, on behalf of my (still) gorgeous wife, Margaret.
We both wanted to wish you all a belated Merry Christmas and a Happy New Year and in addition Margaret and I want to thank you sincerely for all the kind support you gave her a few months ago.
Margaret has been taking Forsteo now for about 5 months. As an observer, it clearly hasn't been easy for her and then backed up by her daily descriptions of what she feels ( we keep a diary) it is clear she is persevering with just about every side effect this drug can throw at her. I know Margaret is aware that this drug is currently the ONLY one available to her, given her complex medical conditions.
Her very supportive GP has prescribed Epipens and Ventolin inhalers because very quickly, Margaret's history of adverse reactions to drugs started to repeat as she began to have breathing difficulties with the start of asthma symptoms and lung problems following her morning injections. This was alongside wicked nausea and heaving. After weeks of the very worst side effects, Margaret's perseverance seems to have paid off in so much as, yes she is still having side effects including Asthma to a lesser degree, but today they are in the form of bone pain particularly in her spine and thighs, dizziness/ off balance and very strong migraines.
All this is of course alongside other chronic conditions including INOCA which causes spasms in her veins and frightening chest pain and arrhythmias.
Our next concern of course, is what to do when Forsteo is no longer available to her.
When I last wrote, Margaret had applied for PIP. After 5 months we heard that she had qualified for the basic rate, so that will be of some assistance. Following the award, Margaret applied for a blue badge and on a happier note, we couldn't believe how swiftly it was dealt with. From start to finish was less than 2 weeks.
The last thing that Margaret wants to share with you ( as it may help someone in the future ) is the matter of pain relief. Some of you may recall that Margaret is allergic to all pain medication due to severe allergic reactions. It is still very early days but nonetheless there are some glimmers of hope that Medical Cannabis products may be starting to help.
This is available on private prescription from The Sapphire Clinic. Margaret approached them with the blessing and assistance of her GP and just like any other 'medicine' has started on a very low dose of drops of oil. Even this has initially given her some side effects, but she has built up slowly over a number of weeks to the dose that the clinic wanted her on. Her current prescription is a very potent, high quality CBD oil without the THC component of the plant. We expect her prescription to increase over coming weeks and we'll keep anyone interested, up to date with her progress.
Our heartfelt thanks again to all of you who have taken the time to 'listen' share and give your valuable time and support. All of you are dealing with this awful and what Margaret describes as an 'unappreciated' disease. We wish you all a safe and comfortable year ahead.
Warmest wishes from Margaret and Myself.