It’s been 2 years since one of my consultants first mentioned a trial of Octreotide and I finally gave myself the first dose in April. I’ve tried a lot of drugs over the years all with very limited success. My condition, enteric neuropathy (secondary to my Ehlers Danlos Syndrome), currently has very few treatment options available. First line treatment for enteric neuropathy and other motility disorders (conditions that affect movement through the gastrointestinal tract) are called motility drugs and include Domperidone (Motilium), Metochlopromide (Reglan), an antibiotic called Erythromycin and a fairly new drug called Linaclotide (Linzess). These drugs increase the nerve and/or muscle function in the digestive system but have very limited effect in people with enteric neuropathy or other more severe forms of dysmotility.
For me, the aims of treatment are to maintain weight and nutrition through enteral feeding, and to manage my symptoms with painkillers and anti-sickness medication. I have a couple of drugs that help me manage my symptoms but for the most part, I’ve not had much luck with drugs. Most of them have had adverse effects on me and so I’m rather reluctant to try new ones. I’ve tried several different drugs that target nerve pain in the gut such as Gabapentin, Pregabalin, Quetiapine, and (the very worst) Duloxetine. At best, these drugs were unpleasant and at worst they were unbearable. Unfortunately, none worked for my symptoms. I found the ‘nothing to lose’ mentality wasn’t all that. I had to work myself up to take anything new because I dreaded what it would do to me. After trying Duloxetine, I decided I didn’t want to try any new drugs as for me, the almost definite chance of terrible side-effects outweighed the very small chance of them helping.
I’m fortunate that I have a good team of health care professionals who have always been very honest with me about available treatments (or lack of) and the fact that they just don’t know. They’ve always discussed any ideas they’ve had with me and without judgement they have allowed me to make my own decisions around any treatments or tests that I’ve been offered. When I told them that I was sick of trying new drugs they continued to support me. I often worry that if, by saying no to something (even when there’s very little chance of it working) I’d be labelled as ‘not wanting to help myself’ but there has never been any of that.
WARNING: JARGON (which I will very badly attempt to explain)
Two years ago, at my first follow-up after leaving Salford Royal Intestinal Failure Unit, a new consultant mentioned the possibility of a drug called Octreotide. He said that unlike working on the nerves or pain centres, it worked on the Migrating Motor Complex (MMC) Phase 3 (as I understand, the movements that your digestive system makes when it is in a fasting state) and that my test results show my gut to have especially poor function in this state. It wasn’t a painkiller and it didn’t touch the nerves. It blocked intestinal secretions and tampered with the hormones within the gut. He told me that there were not many people who had tried it for my condition and so he wasn’t sure on what results I would get.
It had been trialled in diabetics with associated gastrointestinal failure and this had shown promising results. The drug itself is not new and is commonly used to treat gastrointestinal tumours as well as growth hormone disorders and some types of brain tumour. The downside would be that it could affect my already low blood pressure and heart rate, and this would be a risk. I said that I would like to have a think about it. I was more open to trying it as it didn’t work in the same way as any of the other drugs that I had tried (and had horrible reactions to). He printed me out the study of the trial in diabetic patients and told me to have a read through it. I read through it and highlighted the issues raised around blood pressure and we discussed it next time I saw him. He said that if I were to try it, I would start it in hospital to ensure that it was safe and so I decided to proceed.
Unfortunately, it was not a case of him just writing me a prescription and taking the medication. As it wasn’t a drug signed off for use in my condition and as it wasn’t cheap, I’d have to go through a funding panel. The first stage was my consultant putting my case to a panel at Salford Royal to ensure suitability. As the drug can affect your liver, I had to have some tests beforehand to ensure that I was healthy enough to start it. Once these test results came back, my consultant wrote to the funding board – to pass the first round they needed to know that I was fit enough to try it, had a severe case of gastrointestinal dysmotility and that I had tried other treatments to control it. It passed the first funding panel fairly quickly and then it had to go to a second funding panel at my local commissioning group who had to agree to fund it. The whole process from having suitability tests to receiving funding, administration, and getting a date to start it took 2 years!
Prior to starting the drug, (since about January), I’d been in a pretty bad way with my blood pressure. With this in mind, I wasn’t in the best state to be starting a drug that was going to hit my blood pressure hard, but I was starting it in hospital and hoped that if it worked, I’d tolerate more fluids and this would combat the low blood pressure. I discussed this with my consultant at my appointment before starting it and she agreed.
It was the day after my wild night seeing the Vaccines at Manchester Academy, so I was pretty tired and I was also in the middle of a flare-up. If I’d tried to arrange a date outside of a flare-up, I’d probably never get the opportunity to start it. I was admitted to the day case ward where I would take my first dose of the injection and be monitored for the next four hours. The drug is a short acting drug and I would need to take it three times a day to keep it in my system. It comes in a pre-filled syringe which I give to myself subcutaneously (into fatty tissue). I’m already a dab-hand at injections as I’ve been doing various intramuscular (into the muscle) anti-sickness meds since I was 14. This is the first time I’ve done sub-cut but I found it isn’t really any different to intramuscular.
The nurse on the day ward asked me if I wanted her to do my first one so she could show me or if I wanted to do it myself and she watch. I chose the latter. I was pretty stressed out about it because I know the effects of a subcut injection happen pretty quickly, and despite this being ‘not like the other drugs’ I was still dreading adverse reactions. When the nurse took my blood pressure before I’d given myself the first dose, it sat at 92 systolic (low but normal for me) and afterwards it shot up to 108 (normal and very good for me!). This was good news, but I was also aware that I was really stressed about having a bad reaction so the increase in my blood pressure was probably due to that.
As my observations were all very good, I was allowed to go home and I collected my injections from the pharmacy. The pharmacist told me that I had been prescribed three injections a day but to start on two until I was use to the side effects and if I was having a good response to two I could stay at that, but if I hadn’t seen any positive response (in terms of my intestinal function) then up them to three a day.
Unfortunately, this time round I did not have a good response and when I got home I was comatose. I took a dose the next morning but had to call in sick. I struggled just moving about the house, felt extremely breathless whenever I did move, my pulse rate felt as if it was barely there and for the first hour or so after taking the injection I felt so vacant I couldn’t process anyone talking to me. It was so weird. It wasn’t painful or unbearable like drugs that I’ve tried in the past, I just felt disorientated and ‘barely there’. I took my first dose at the hospital on the Tuesday and managed to carry on taking two doses a day until Thursday. I took my last dose on Thursday evening and then woke up in a hot sweat and threw up on Friday morning so decided to stop taking it. I took Wednesday off work (the day after the hospital) but went back into work on Thursday barely functioning. Despite taking my last dose on the Thursday night, come Friday morning I couldn’t even walk in a straight line. The worst part for me was the worry that I live on my own and I worried that my blood pressure and heart rate could be dangerously low. If something did happen to me after taking the injections, nobody would know.
It was frustrating because I found nobody that had been in my position. I posted on a couple of Ehlers Danlos Syndrome forums and had no response. I posted on the PORT charity forum and found a couple of people who had taken it short-term but they were already so much more poorly than me and couldn’t compare symptoms. What would have been so helpful would have been to speak to someone who had been there before to ask them if this was ‘normal’ – would it pass? Should I introduce a third injection? How long should I give it? I even asked the nurses on the ward if anyone else had taken Octreotide and they’d told me that they often have people starting it on the day unit, but nobody with the same condition as me. I really wanted it to work. After waiting two years, I’d pinned more hope on it than I had with anything else. And they’d given me the entire three months supply, filling my fridge to the brim, looking at me every time I went to get the milk for a brew.
I saw my consultant a few weeks later and told her about my symptoms. She agreed that I was right to stop them and that I could discontinue them if I wanted to. But I didn’t feel as if three days on two thirds of a dose was really enough to know whether they would work or not and I wanted to try them again. She suggested taking some time off work so that I could rest and take them so I said I would think about that. I had a load of work on so I needed to get through the next few weeks before I could think about taking any time off.
Another couple of weeks went by and my annual cardiology appointment came round. I told my cardiologist that I’d been struggling with my blood pressure again, and then I had started the Octreotide which made everything worse. She suggested trying medication for my blood pressure again (which hadn’t been successful in the past) and that I shouldn’t start the Octreotide again until my blood pressure and heart were back to ‘normal’.
I started on Midodrine straight away and within a week I felt better than I had in months. To check it wasn’t just a ‘good patch’ I borrowed a blood pressure monitor and actually got good readings. I didn’t want to count my chickens before they’d hatched so I left it another couple of weeks and then when bank holiday came around, I considered this my ‘time off work’ and decided to try my Octreotide again.
Fortunately, this time it went much better. On the Saturday I started on two injections and tolerated them well. On the Sunday, I took two injections again. I started having bad stomach cramps on the Sunday and didn’t know whether these were related to the injections or not and then on the Monday I added the third in.
Since then, I’ve tolerated the Octreotide fairly well. I still get a little bit of dizziness and a ‘fuzzy head’ but nothing compared to the first time round. For the first week I had stomach cramps for around half an hour after taking a dose but then it would ease. My vomiting got better at first but I get a mild grumbling travel sick type feeling which seems to be a side effect and worse around each dose. I started tolerating my feed really well, even my night rates went up but they seem to be dipping a bit now. I got my feed up to a record rate last Tuesday and decided to take it off for a short gig (I know!) and then run it faster again to ‘make up the time’ – unfortunately, I woke up at 4am with violent vomiting and pain. I’ve not really got back to where I was since then. I’m not sure if I pushed it too far with my feed or if I’ve just been through a good patch and now it’s over.
I’ve been taking Octreotide for just over two weeks so it’s still early days. Whilst I’m tolerating them well, I’m still on the fence as to whether it’s improving things for me or not. I genuinely felt as if it was helping at first, but the last five or so days haven’t been as great.
I wanted to document this in a blog, in the hope that if anyone else was offered an Octreotide trial for a motility disorder they might find it useful. I trawled through google and found absolutely nothing useful at all. I think it’s still in the early days of being offered as a motility drug, but if it gets offered more, I hope this blog will be useful to someone. It would have been great for me to read about someone else’s experience before I started. I’ll probably do another update at some point but this is where I am up to now! If anyone is looking at starting this drug, please do feel free to drop me an email on firstname.lastname@example.org
Thank you to everyone who has asked how I’m doing on it both this time and last time – I appreciate it!