#18 Thursday 18th August
Midnight with 2 Imodium. Not drinking enough, have been told that I must drink between 2-3 litres every day and was doing great but slacking off.
It is now Saturday 20th August and I’m still very tired and thirsty. I must drink more. Finding it very hard to get my head around the 5 injections next week and just a little worried about their effect on me. I do find that having been so sick after the first 3 weeks it did help me get my head around all this but I don’t fancy feeling sick every day. Food still a nightmare and I’ve lost just over ½ stone. I’m not that big at the best of times and as weight is inclined to fall off me when I’m stressed have always carried an extra few lbs but this weight loss wouldn’t want to continue. The hospital are monitoring me and have said they will put me on an appetite stimulant if it continues and also mentioned ensure!
So now that I’ve finished 6 weeks, albeit with a weeks break, of 3 miu’s 3 times per week of interferon I thought it would be a good idea to look in detail at the side effects and see how I have reacted. I will do it again when I have completed my course of 5 injections a week etc. The following information is taken directly from the interferon leaflet. The particular drug I am on is Roferon-A
Doctor must be notified straight away if any of the following serious side effects are noticed
Develop signs of difficulty breathing, wheezing or hives
A decrease in sight
Signs of depression
Well I have had a problem with rashes and bites so have been taking anti-hystamine, sight ok signs of depression – well during the first 3 weeks I was severely fed up but felt it was a catch 22, not being able to eat, no energy and feeling sick, the weeks break seems to have got my head around this one thankfully
Other possible side effects
Fly like symptoms such as tiredness, chills, muscle or joint pain, headache sweating and fever – yes all of these except the headaches which I am glad about as suffer with migraines at the best of time.
Infections; pneumonia, cold sores and genital herpes – no to all
Blood and lymphatic system disorders; anaemia, reduced platelets, lower white cell counts. Bloods are coming back fine so only one here is I’m covered in bruises especially my injection sites. If I were to end up in A & E they would think I was a drug addict!
Immune system and endocrine disorders; autoimmune conditions, sarcoidosis – no to both TG
Gastrointestinal, metabolism and nutrition disorders; Anorexia and nausea, bitter taste, dry mouth and weight loss – yes to all apart from the anorexia. Stomach pains, diarrhoea, vomiting, heartburn, constipation and flatulence – well have definitely had most of these hence now taking Imodium with each injection.
Low blood calcium, electrolyte imbalance, dehydration, diabetes and hypertriglyceridaemia – only one there is the dehydration, must get my water bottle!
Nervous system and psychiatric disorders; Headache, dizziness, pins and needles, trembling, numbness, sleep disturbances, nervousness, anxiety states, forgetfulness, drowsiness, confusion, changed or abnormal behaviour, depression and suicidal behaviour. Vertigo, convulsions, stroke and coma – interesting actually to read back on this as have had the pins and needles, sleep disturbances, forgetfulness, drowsiness and numbness. However not on a daily basis, well mostly but am writing everything down, sometimes though I even forget to write it down! Chemo brain.
Eye disorders; Conjunctivitis, eye discharge and visual disturbances – another interesting one as had an infected cyst recently never thought it was down to the interferon.
Cardiac, vascular and respiratory disorders; Temporary low or high blood pressure, irregular heartbeat, slowing of the heart rate, palpitations, chest pain and heard attack. Build-up of fluid in the lungs and a bluish discolouration of the skin or lips. Hmm, have low blood pressure at the best of times wonder could this be added to my feeling of tiredness?
Liver and kidney disorders; Definitely ok here as these are both tested every 4 weeks I also know that interferon puts a strain on the liver which is why I’m unhappy having to take paracetamol also.
Skin and mucous membranes; Increased sweating, rash, dryness or itching of skin, psoriasis, runny nose and nose bleeds. Hair thinning or hair loss. I have sensitive skin at the best of times and need to cream daily, however, I have noticed it is dryer than usual. I am also more sensitive to the sun and am getting burned with factor 50 not good! Yes I get itchy and have regular nose bleeds again didn’t connect the two. Hair loss – well thankfully I have loads of hair and my hairdresser said he would be happy if I lost some of it, it looks as if he is going to get his wish as there is definitely more than usual coming out.
Musculoskeletal disorders; muscle and joint pain, lupus, erthematosus, arthritis – very much yes to the joint pain
Other side effects; Flu like illness, tiredness, fever, loss of appetite chest pain. Chest pain no but yes to all the others.
So there’s the side effects and my reaction so far.
On the other hand I am looking well but please if you meet me don’t comment on how well I look. It really doesn’t help either me or others like me undergoing some treatment or other. When people say to me I look well I often wonder do they doubt what I am going through.