Managing the symptoms and side effects of my autoimmune disease is a juggling act.
Like many sufferers of an autoimmune disease I am prescribed a wide variation of medication and as with all medications they help manage the symptoms but they also have side effects.
Often the side effects are not well documented and will vary from person to person.
I am prescribed Prednisolone, this type of medication is widely used to manage inflammatory conditions, infection, allergies, certain cancers and is commonly used to prevent organ rejection after a transplant.
Prednisolone is a corticosteroid drug which helps reduce inflammation and dampens down the immune system.
My dose varies from 2.5 mg when I am doing well, up to 40 mg when I am unwell. I find this medication helps with my mobility and my energy levels, however, reducing the dose has to be done slowly and gradually as it causes withdrawal symptoms.
The long-term side effects of Prednisolone on my system are osteoporosis, gastrointestinal problems, stomach ulcers and liver problems.
I have been prescribed Methotrexate for the last five years and this medication is commonly used in the management of autoimmune diseases and cancer.
Methotrexate is an antimetabolite and it works by suppressing the immune system to help reduce joint damage, in the hope that it will preserve the joint function. It also slows the growth of cancer cells.
I take this medication in tablet form once a week and I will normally take it on a Monday morning.
The side effects of Methotrexate on my system are nausea, vomiting, stomach pain, dark urine, diarrhoea, dizziness and headaches. I struggle on a Monday after I have taken this drug. and usually, have to stay at home. I then have to take Folic acid a few days later to help prevent folate deficiency caused by taking Methotrexate.
I recently discovered that Shingles is a common side effect of Methotrexate.after recovering from a very nasty about myself.
Anyone suffering from Shingles has my heartfelt compassion.
I am prescribed Lansoprazole and Domperidone for indigestion, acid reflux and to help manage my stomach ulcers.
I also take Fluoxetine which is a well-known antidepressant. I find it helpful in managing my secondary Raynaud’s disease as it increases the circulation around my body and helps to manage my ulcerations and sores. It is also known to help brain function as it increases the serotonin activity in the brain.
I take Losartan to help maintain my kidney and heart function.
Hydroxychloroquine is a medication commonly used in the treatment of malaria. I take it as it helps with the inflammation in my joints.
Sildenafil, also commonly known as Viagra, is a drug used to help erectile dysfunction as it helps to regulate blood flow to the extremities. I am prescribed Sildenafil to increase the blood flow to my fingers, and it helps prevent digital ulcers and sores, but sadly, it has not straightened my fingers!
Every three months I go into hospital to have an Iloprost infusion, this drug is used to help with arterial hypertension and diseases in which the blood flow is constricted.
The infusion is done over a five day period for approximately six hours a day with the canular being left in overnight.
The side effects of this drug are severe, low blood pressure, nausea, dizziness, vomiting and headaches. The upside of this drug is that I feel much warmer after the treatment and my skin feels softer. I liken this treatment to having antifreeze pumped into me.
It is hard for me to say if the benefits of the prescribed medication outweigh the side effects.
My scleroderma and the medication I take has contributed to me having an unstable jaw and no back teeth. I am prone to gum infections, tooth decay and live on a soft food diet.
I regularly visit The Eastman Dental Hospital in London for special care dentistry as I am unable to open my mouth wide enough for normal dental access because of the deterioration and sclerosis of my TMJ (temporal mandibular joint).
I want to believe that an early diagnosis of my disease and taking the medication has helped stabilise my condition and prolong the severity of this disease, but in all honesty, I’m not sure.
Medicine is not an exact science, and treatment and management of autoimmune diseases are still in its infancy and new research is ongoing.
All I can say is that I have chosen to take the advice of my specialist medical team and I choose for now to take the medication.
I am a believer in maintaining my own self-care and taking responsibility for the management of my disease.
Staying warm and living at a temperature that does not drop below 20 degrees Celsius. (68 degrees Fahrenheit) is a priority. When I get cold, my body starts to tingle, I go numb, feel lightheaded and dizzy and in the past, I have fainted. Consequently, I live in coats and gloves, I have a very high heating bill and avoid the freezer isles in supermarkets.
I have tried complimentary treatments, including different types of healing therapies, acupuncture, reflexology, massage therapies, osteopathy, chiropractic work and physiotherapy.
All of them are beneficial and help alleviate my pain, they also require funding.
I treat myself fairly regular to a deep tissue sports massage as I like the feel-good factor it provides at the time, and it helps turn down the intensity of my pain; as with all things it is short lived.
I am blessed with a positive mental attitude inherited from my mother and grandmother, and as a consequence of my PMA, I choose not to dwell on the what if’s.
I did not choose to have this disease and I empathise with anyone suffering from illness, physical or emotional.
All I can do is choose how I manage it and how I respond to my illness.
My mantra in life is to be kind to people as we don’t know what they are suffering from.
Please feel free to share your unique experience and I look forward to hearing from you.
Since writing this post, I have been to the Royal Free Hospital to see my specialist. The outcome of this visit was that I am being taken off Methotrexate, which is a very old-fashioned drug and has been around for the past 50 years, and I have been put forward for funding to try Tocilizumab; this has been around for about 10 years, and is a type of drug called a biological therapy. Hopefully, if I am a successful candidate, I can start within the next six weeks. I will keep you posted!