The next part of my Crohn's journey

Well as you all knew my Crohn's had been in a flare since March time this year and I had been in to have a colonoscopy and MRI scan in May. My results had shown that my combination of 6-mercaptopurine and allopurinol were no longer working for me. My consultant had to make the decision on what my next course of drugs would be as my Crohn's disease is medication dependent. Hearing this off my consultant of 2years was a shock as it is the first time someone has told me this in the entire 5years of being diagnosed. I can see why he had said this as every time my Crohn's flares up I cannot manage it by myself with my diet I always need to get intervention from my medical team and put on steroids or I am stuck in hospital on umpteen different drips and IV steroids. This time I had gone to my GP and explained everything and that was when she said it was my Crohn's as it was not my normal flare up symptoms I was getting it was different and now we know why as it had moved into my small intestine and was no longer active in my large intestine. So my last consultation with my consultant in June he said we were going to try Infliximab (Remicade) and if it does not work then I will be on my last available option which would be Ustekinumab (Stelera) before it would most likely be asking the guys in charge of trial drugs to get me on the list. I am only 26 years old and I have nearly ran out of options to control my Crohn's disease as I am medication dependent. I do not want to be kept on steroids for ever as I have been on Budesonide now for 5months and it has started to affect my joints as I cannot take calcium supplements due to me having a gene called familial hypocalciuric hypercalcemia (FHH) as my calcium in my body is higher than normal and I rarely have to take calcium now because of the gene. It is constantly monitored though to make sure it is under control as when it gets really high I suffer from more frequent headaches and I drink a lot and I mean a lot this is usually around 5litres a day. So on the 24th July I had started my infliximab journey and a week later I am struggling with the fatigue but I have started to see small improvements with my Crohn's but it is still early days and I have 2 more rounds before the frequency of my infusions is put to 6 or 8 weeks and then go from there.

This was my infliximab infusion last Tuesday and I told the nurses who were looking after me that it was my new friend (I hope it is anyway as I hope that it works for me then I can live a better live and hopefully not need to panic where all the bathrooms are when I go out).

Mercaptopruine

Mercaptopurine is also known as 6-mercaptopurine, 6-MP or Purinethol (brand name). It is an immunosuppressive medication used with other drugs to treat certain types of cancer such as; acute lymphocytic leukaemia and lymphoblastic lymphoma; as well as Inflammatory Bowel Diseases such as; Crohn's disease and Ulcerative Colitis. It is used to help suppress over activity in the immune system which helps slow down the growth of cancer cells if used in the treatment of cancer.

 

Mercaptopurine comes in tablet and liquid form.  Just like the Azathioprine the liquid form is rarely given out to patients. It is advised to drink a full glass of water with or without food when taking the medication.  This is because there is a risk of kidney stones by using Mercaptopurine.

 

Mercaptopurine tablets

 

The dosage given to the patients is similar to Azathioprine as it is based on the patient's body weight, medical condition and their response to the treatment.  The drug might be absorbed through the skin and lungs so any woman who is pregnant or is trying to get pregnant should not handle this medication or breathe in the dust from the tablets.

Mercaptopurine tablet bottle

 

Due to Mercaptopruine effecting the immune system people who take it are more prone to picking up every bug going.  Signs of infection include fevers and chills and feeling generally unwell.  Whilst taking Mercaptopurine it is important to use a sunscreen with a protection factor of SPF 15 or higher due to the skin becoming more sensitive to sunlight.

 

Side Effects

• nausea or vomiting.
• diarrhoea
• loss of appetite
• hair loss
• bruising and/or bleeding
• dizziness and/or fainting
• joint pain/swelling
• tongue/mouth sores or pain
• unusual tiredness
• symptoms of liver disease such as; persistent nausea/vomiting, stomach/abdominal pain, dark urine and yellowing of eyes/skin
• symptoms of possible lymphoma such as; swollen/painful abdomen, persistent fever, night sweats and unexplained weight loss
• change in amount of urine with pain in the lower back and/or side

 

Precautions

• avoid people who have recently received the oral polio vaccine and the nasal flu vaccine
• limit any alcoholic beverages as it can increase the risk of stomach/oesophageal irritation or liver damage
• there is a mixed view on whether you should take this medication during pregnancy and breastfeeding as there is not enough research as to what can happen to the unborn child/baby

 

Interactions

• this medication should not be take within 2weeks of receiving a live vaccine e.g. measles, mumps, polio
• it should not be used with Febuxostat as it can have a very serious interaction

For myself I had picked up the majority of the bugs going around from colds and chest infections especially off my nephew and baby girl :( At the start I had felt really sick taking it but my body had got used to it after a few weeks. Also the first 2months my hair had thinned out really bad that it looked like I was going bald especially above my ears but I had started to use different products to thicken it out again but not to the full thickness it was at the beginning of taking all these medications for my Crohn's disease (like a lions mane).