Tonight I hosted the #IBDHour chat on Biological Treatments. In the last six years since I was diagnosed, I have found that I respond best to biological medications; which have given me good quality of life (QoL) and the ability to be closely monitored and managed by my IBD teams.
In this post, I’ll answer – at length, because 240 characters and a tweet threads just aren’t enough! – the questions from the chat and provide some good links to resources and detail some more of my experiences with biological medications.
Disclaimer: This information is based on my own personal experience with Crohn’s medications and should not be used as medical advice. My medication regimes and processes are part of the IBD protocols set out by NICE, the CCG overseeing the NHS Trust and my specific hospital/s. If you seek advice regarding the medications best suited to your condition or indeed any discussion about changing medications or removing them, please contact your IBD team for medical advice.
Here are the questions:
- Let’s start with some introductions! Please say hi – name, age, where you are and share your diagnosis if you wish. How has your day been? #IBDHour
- What is your current treatment plan for your IBD? Does it involve medication? #IBDHour
- Have you heard of biologics used for treating IBD? Have you ever tried any of them? #IBDHour
- Have you had success with them? If not, what was the reasoning? #IBDHour
- How do you feel about the risks these drugs bring with them? Do you think these medications are worthy of the risks? #IBDHour
- If you’ve had side effects of these medications, have you received help with them from your IBD team? #IBDHour
- Have you received more than one biologic? If so, how did that manifest itself and how did you feel? #IBDHour
- Have you received other medications alongside a biologic? If so, what was it? How effective was it? #IBDHour
- Finally; how do you find your treatment on biologics? Overall positive or some aspects of negative? If so, what is negative about it? #IBDHour
Let’s get into it!
A1. As most of you know; I am Louise, I’m 29 and I was diagnosed with Crohn’s disease in late 2011. I currently have an ileostomy and am receiving Vedolizumab.
A2. Yes, I currently receive medication for my Crohn’s disease management. This is the third time I’ve been allowed to have Vedolizumab.
My journey with Vedolizumab started in late 2015. I had spend almost eighteen months on Infliximab; as a solo treatment plan and in the latter months of treatment I also had it along side Methotrexate to help my body accept the drug and halt it’s creation of the antibodies towards it. It was at this time that my consultant wanted me to seek a surgical opinion and a second GI opinion. So, this was a time of great fear and unknown. I travelled to Nottingham for my second opinion – of which they offered a clinical trial or surgery, read more here – but also accepted a surgical opinion in early 2016 – more on that here too. I had Vedolizumab on the first try between November 2015 and March 2016, a total of five doses. My second try came after my two surgeries in the same year, receiving four doses between September 2016 and February 2017. For the next six months, I went without medication. I returned to Vedolizumab in September 2017 after a very servere flare up which left me admitted for almost 6 weeks in total. I am now due to receive my sixth infusion tomorrow!
Why have I been allowed to return to Vedolizumab so many times?
Well, I had leftover funding from round one, so we restarted after surgery as planned. This most recent restart had been instigated my consultant before I moved to a new hospital and new IBD team. He and my then IBD nurse stressed to my new team how well I do on biological treatment and I needed to remain on this, regardless of whether my disease went into “clinical remission” or not – we learnt in the summer of 2017 that my body has a funny way of flaring up within weeks of scans. I am happy with this decision; all I want from my care is for the decisions to be explained to me and for me to be part of them.
A3. This is my drug history:
- December 2011 – March 2013 : Humira – read more here, here, here and here.
- October 2013 – March 2015 : Infliximab – read more here and here.
- March 2015 – September 2015 : Infliximab & Methotrexate (MXT) – read here, here and here.
- November 2015 – March 2016 : Vedolizumab *Round One* – read more here and here.
- September 2016 – February 2017 : Vedolizumab *Round Two* – read more here and here.
- September 2017 – present : Vedolizumab *Round Three* – read more here.
Here are the NICE guidelines for the three biological medications I have received:
- Vedolizumab for moderately to severely active Crohn’s disease
- Infilximab and Adalimumab (Humira) for Crohn’s disease
- As well as the guidance for the treatment for IBD as a whole.
NB: It is important to note that biologics are given to moderate to severe Crohn’s disease in both adults and children.
Biologics are always guided and approved by your IBD team and the hospital MDT panel. They assess your clinical picture and determine if you are a suitable candidate for the drug. They are expensive – Humira £400 p injection, Infliximab between £400-1k p infusion depending on weight and Vedolizumab £550 p infusion. A CCG approves the funding as it is allocated by the NHS and NICE guidelines dictate the clinical need for a patient to receive a biological drug for IBD.
A4. For almost all of these periods in time, my medication helped me live a good life. It wasn’t my ‘best’ life – that didn’t happen until my stricture and colon came out – but I was able to make the best of what was happening. I was allowed time off for my medication with my employers and my side effects were minimal. I had small side effects, that once discussed with my IBD team, allowed me to continue with my treatment. Of course, all side effects should be taken seriously; and when I was having my infusions in the hospital, I was closely monitored and evaluated within the realms of the NICE guidelines.
A5. Humira was discontinued when I developed very painful joints. Humira, whilst being the easiest of the medications to ‘do’ – I could inject at home when my injection was due, it took all of twenty minutes from getting it out of the fridge to get to room temperature to throwing the needle pen into sharps container, and it really was an instant shot of energy (in the beginning) – became the most difficult. After six or seven months, the effectiveness of the drug wasn’t last the full fourteen days between injections and I was also struggling to do the actual injecting. It was a difficult time and my health was impacted hugely.
Both Inflixmab and Vedolizumab are hospital based infusions which require canullation; something which bothers most but not me. I could take the multiple needle sticks to get a decent vein. I could take the long trips to the hospital to receive the loading doses and the longer periods between medication. I could even get use to the pre-infusion blood draws too. I had the best success on Infliximab; I achieved a lot in the year whilst I was just recieveing that. But once we found out that my antibodies were high and I wasn’t retaining the drug alone and needed the MXT, my health was suffering. MXT took a while to kick in – 6 to 8 weeks for full coverage and effectiveness – and that was a miserable time. I had to be strict with my MXT regime as well as the thrice-weekly folic acid to protect myself.
This is what they mean when they say that IBD medications have side effects and consequences. Not always from the actually drug, but these drugs affect other part of your body, other organs and its a balancing act. It can get quite complicated and complex.
Getting used to taking biological medication takes some times. What does help enforce a routine is the pre-sepsis checks which help monitor your current health. Biological medications can not be taken if you are suffering from an infection, a fever or if you are on antibiotics. Keeping yourself well outside of your infusion dates can sometimes be hard, especially in the winter. So biological medication should be used when necessary, and this is a discussion that you have with your consultant at length. I wasn’t just granted my medications; I had to be assessed, fulfilling the requirements and prescreening testing too. It is also expensive. It requires the hospital acquiring funding from the local CCG as it based on year worth of medication. But I believe that it is worth the risks. If you are concerned at any point, your IBD team should be consulted and you should be able to ask all and any questions you have. You are, at the end of the day, receiving this medication. You have to deal with the possible fall out and side effects. You are the patient.
A6. My infusions were not without problems.
Several times in the early infusions I would suffer from insane bruising, multiple needle sticks resulting in very sore muscles, arms and especially hands. Luckily, I have not had an adverse reaction to the medication during the infusions. This is the only bad infusion I’ve had and it was my very first Vedolizumab.
What has been more troubling has been the effect my medications have had on my liver. We first were made aware of this back in April 2014 when I fell sick at work one Saturday. Now, my liver is and always has been monitored with my pre-infusion blood work. This being the LFTs – a group of specific blood tests that detect the effectiveness of the liver, the inflammation in the body and what is being secreted. Eventually, I was sent for a specialist referral to see a Liver consultant in Birmingham. You can read more about those issues here and here.
NB: There will be a project / series of Liver and IBD posts coming this year!
A7. As previously discussed, I have received the three main / more common / more established of the biological medications. When I was told that I could come off the Humira, I was elated – the side effects at that point were not worth the benefit I was getting, it was mid to low, at best.
But when I was told my Infliximab was loosing its effectiveness due to my body creating antibodies and my troff levels – how much of the drug is retained by my cells – were bad too; I was disappointed. They pushed me up the list to be discussed in the MDT and they decided on adding in MXT. I was advised of the risks – needing to take it on time, every week, without fail; to manage to take my folic acid along side it, the fact it wasn’t going to work instantly, it could affect other organs and possibly not help at all – but concluded that this was the next step. I also agreed at this point that I would give Inflximab and MXT combo six months to work and if not, I would look into surgery.
Surgery for me, was a big leap. It was a big risk in itself but I had gotten to the end of my tether. I had taken all the faith on board with the biological medications; it was time for some drastic but effective treatment.
A8. I took MXT for six months – June to December 2015 – to help improve my Inflixmab levels. Two months into the regime, I had this discussion with my consultant and we talked about the plan for the next couple months. I wasn’t having side effects from the MXT but I was loosing faith. During the MXT period, I also was on prednisone and attempting an elemental diet to keep a flare up under some control, whatever that was. I wrote this at the end of 2015 and it sums up how the treatment plan of Inflixmab and then it coupled with MXT has left me feeling.
This is why it is important to remain in contact with your IBD team throughout biological treatment. If you know your disease, and it has the tendency to be bit mad, unpredictable and has a mind of its own – like mine! – then raising issues with your team is fundemtnal. You know your disease and you know what is normal or what you can realistically put up with. It might seem like its one thing after another, like a snowball effect; and this is sometimes the risk of biological treatment plans. I stuck with mine for as long as I could. No-one talked me into or out of treatment, it was always down to me, but after consultations with my consultant. And I always had my IBD nurses at the end of the phone or an email for queries or as a sounding board.
A9. Overall, I’ve found biological treatments to work well for me.
Some of this is down to my pattern of disease. Some of this is down to the locations of my disease throughout the last six years. And, I have always followed treatments plans. I have always done my best for myself.
How have you found your experiences of medication with IBD? How have you experiences biologics? Have you had successes or failures?
Do you have any questions or queries? Or just want to share your own experiences? Leave me a reply or tweet me @sapphire20 or find my blog page on Facebook!