I can’t quite explain all my emotions as I write this piece because there is no way to truly describe the way it feels to have your hopes shattered so painfully and on such a deeply personal way.
I had hoped that this time it would be different. I had prepared myself emotionally and physically for all possible outcomes, but I really only wanted one outcome. Relief.
As the days passed by after my first injection it wasn’t long before the pain started and the side effects started to overwhelm me.
It seems that I am one of those people who experience difficult side effects to these biologic therapies. These therapies are used in the hope of treating and controling Autoimmune Diseases by suppressing the bodies Immune system. Some people find them “life changing” and that is why I have kept trying them. Again and again.
I had scoured the internet and read all the success stories where people had found relief from pain and been able to stabilize their disease activity. I let myself become excited. I imagined myself sleeping and moving with much more ease. It was a wonderful fantasy.
But then the reality took over.
For some reason, unknown to me, I am very sensitive to drugs and medications. All medications in fact, but some more than others. It doesn’t take long before my stomach starts to become agonizingly painful and then nausea and fevers take over. Although I have bad migraines and balance issues already, they become much worse the moment these drugs are introduced.
Ironically, although the DMDs (Immune Suppressants) are supposed to relieve pain and symptoms, one of the worst side effects is that my joint pains are so much worse. Torturously worse!
I still don’t understand why.
In fact, as I searched the literature that comes with the drug kit – which includes a very long list of possible side effects which is truly shocking. As well as a cold storage pack, injectable pens, carry bag, nurse, med wipes and leaflets. You are also informed of a long list of side effects that you may encounter including joint pain, heart failure, breathing difficulties, liver damage, leukemia, tumors and various other cancers.
But I accepted all these risks in the hope, yes hope, of pain releif and slowing down the diseases that are eroding away my body and its organs.
So I have tried and I have cried again because now I must face the fact that my body is experiencing so many side effects that my quality of life is much worse with the therapy than without it; and that is significant enough.
We are always told that these therapies are not cures. I understood it isn’t a cure for what is happening inside my body, but I hoped it would help and bring relief. So now I have to inform my specialists that I can’t carry on and I want to suspend this treatment. I am dreading saying the words out loud. I don’t want to have to say them again. I fear it will be a tearful admission met with awkward silence again. But that is the reality for many like me.
And so now I must begin the grieving process of having tried another therapy and failed it.
I am sad because it hasn’t helped me and it also hasn’t helped my carer/husband who must also go through this grieving with me.
If you happen to be starting a new therapy yourself, I truly hope you have the very best of outcomes. I truly do! I love reading success stories of people who have gained improvements and relief… I just wish I was one too.