Liraglutide: Information and Concerns - The POMC Series

Hello again everybody, 

Stock image from Google.com

I would just like to apologise for the ridiculously late post, there's been so much going on this week it's been mad. I had a second RVI appointment within a month which is very rare for me as I usually get seen twice a year, this was to discuss the drug that I'll be talking about today. It's gotten around to that time of the month again and I'm not going to lie I'm in so much pain I can barely get out of bed and it sucks, other than that I have a skin condition called Acanthosis Nigricans (AN for short) which you only get if you're insulin resistant, the AN for me is on my neck and my upper abdomen directly below my breasts and the skin has dried out and split and resulted in an infection. University is coming up and I've been stationary shopping and preparing myself so, like I say, it's been pretty hectic. 

However, I am back now and today's post will be looking at a possible "treatment" for need of a better word, for POMC, now it's important to note that this drug is absolutely not a cure or a treatment for POMC but I couldn't think of a better word of it at the moment, management I suppose would be a better description actually, but for now I shall get into the post. 

When I was in York taking the call from Professor Farooqi she suggested that because of my rapid weight gain and lifestyle and diet she was concerned about me as a 5 stone weight gain in 9 months is really not good by anybody's standards, she suggested that while I am waiting to be eligible for the Setmelanotide trials (still not eligible at the moment and unsure of when this will be) I should try  another drug called Liraglutide. To be honest her tone of voice when she said "have you ever been offered Liraglutide before?" wasn't something that filled me with hope. You know when someone says something and you know that they know there is a reason you've never been told something like that? Yeah, that's the feeling I got. 

She told me about it, explained that it seems to have worked for people with POMC before and it might be worth giving it a go, obviously I got my hopes right up once again (5th time lucky eh?) and I was so excited to bring my RVI appointment forward to get right on this drug. Before I rushed into anything I decided I would do a bit of research of my own so I wasn't going into the appointment without knowledge, here is what I found. 

Liraglutide also known as Saxenda or Victoza is a drug that was initially developed to be used by those with moderate to severe diabetes and is in the same class as a drug named Byetta, it is derivative of a hormone called GLP-1 which basically stimulates insulin secretion and expands insulin making beta cells in the pancreas. In the beginning the main point of the drug was to drastically cut blood sugar levels and reduce weight in people with diabetes, however after some development the drug is now able to "work on" the MC4R reception, usually faulty in those with POMC which control weight gain and regulation. It was only prescribed for type 2 diabetes until this point, it has since been prescribed to people with POMC and positive results have been seen. Find more information about the drug in general here. The drug itself is very new and a lot of doctors I have spoken t in the last several weeks know very little about it other than the basics. 

Now, obviously I am being given this for weight management as I am not diabetic but I am insulin resistant, those being given this drug for diabetes are given a "normal" dose of the drug usually 1.8mg however people using it purely for weight management are given a DOUBLE dose. Right now, in my head the drug sounds amazing! i can't wait to try it and I'm 100% sure it'll do me some good. However, I also found online that if you have previously been on Metformin, another drug to regulate insulin, and have been intolerant of that, which I was while taking it, you may have an intolerance to Liraglutide, something which dampened my hopes slightly. I was still willing to try the drug though, inroder for the drug to be administered it is one injection each day in the upper arm, thigh or lower abdomen. I would also not be allowed to drink alcohol whatsoever as Liraglutide and alcohol mixed has serious side effects such as increased heartbeat and death. 

Here is where the concerns come in. As I was researching about the drug, as you do, I searched possible side effects and I was so shocked, I will write a list of the possible side effects of Liraglutide in a moment however, the things that caught my eye first is that the FDA, the organisation that approves or disproves drugs has put a back box warning on this drug, meaning that the side effects can in reality cause extremely serious conditions or death resulting from the fuse of the drug. This scared me right away, for obvious reasons, nobody wants to think that a drug that could help them might kill them or cause serious side effects, but because I've taken drugs before that have said side effects could be fatal e.g. Metronidazole antibiotic with alcohol can be fatal, I thought that maybe it was an overreaction. Here is a full list of side effects of Liraglutide:

• Nausea
• Vomiting
• Diarrhoea 
• Constipation
• Upper respiratory tract infection
•  Intestinal and digestive tract problems
• Headaches/migraines
• Sinusitis
• Dizziness
• Back pain
• Flu-like symptoms
• Injection site reactions
• Bloating
• Loss of appetite
• Fatigue

These shown above are common side effects. Less common side effects include:

• Shortness of breath
• Weight gain
• Horse voice
• Lump in the throat
• Throat swelling
• Easy bruising or bleeding
• Infections
• Increased thirst
• Palpitations/Arrhythmia
• Less frequent urination

The final side effects as listed below are the most serious kind of effects resulting from the use of Liraglutide:

• Pancreatitis
• Pancreatic cancer
• Thyroid cancer
• Kidney or liver problems resulting in the need for dialysis
• Death

Up until recently thyroid cancer had only been reported in rats, however humans are now presenting with it more frequently than before, I have decided that I am not going to include any statistics about the drug i.e. how many people have been diagnosed with what side effect because honestly there is so much contradicting evidence online, one report said 19% of patients presented with pancreatic cancer, another said only 1-3% of patients presented some kind of cancer after treatment. One report said people using it for weight loss have lost up to 10 stone and another said the best weight loss seen on Saxenda was only 19lbs in 56 weeks. For me the information is far too jumbled, mixed and contradictory, so until I can properly find out about the real statistics I will not post anything that may not be accurate, up-to-date or correct. It is also important to note that earlier I mentioned that those using Saxenda for weight loss purposes will receive a double dose, these side effects are laid out for those receiving a single dose, therefore it is to be assumed that side effects are more likely to occur when taking double dose of 3mg (according to my doctor at the RVI).

It is pretty obvious to me that this drug is extremely serious and is nothing to be taken lightly, the side effects could end up killing somebody taking it, I have a history of cancer in my family and I'm honestly not sure what to do, if I take it an react badly how many doses before I develop a cancer? Pancreatitis? How long before you see results? Would I need to take a leaf of absence from university? I of I wouldn't be able to work or afford the costs of getting to my hospital appointments as I cannot rely on family to drive me. I'm scared for my health as I cannot afford to gain anymore weight, I'm scared I'll never get to spend my life with Simon and my family, enjoy my time with friends and work in a job I love. I'm scared that my only management option at the moment could be the thing that kills me ultimately. I don't know if I should risk it or not and these are the times I want someone to tell me what to do. I've watched Simon cry because he's scared of losing me to the drug, my condition and such, I've watched my Mam and Nana cry because they can't help me. My head is in bits everyday about this. 

I don't know what to do at the moment but I promised at the beginning of this blog I would keep you all up to date and be as honest as possible about my feelings and how any treatments affect me, I hope you keep reading and please if you get offered this drug for whatever reason think very carefully before jumping right in. 

Thanks for reading and bye for now. 

XO

Life Update and Worries - The POMC Series

Morning all!

Well, it's been an eventful few days and a very busy week! This post is going to be a quick update and a talk about a few worries I have at the moment. Me and Simon got back from York on Friday night and went to see out best friends Annie and Aidan before we went home,it was lovely to see them after a few days and catching up is always fab, Aidan and Simon are like a couple of kids laughing away at youtube videos they've been wanting to show each other over the last week; honestly, I love seeing Simon and my friends get on, makes me extra happy. 
Anyway, last time I posted an update I said I would be taking part in an interview with Sophie Dishman of University of Sunderland which I did Monday passed and honestly she was absolutely fantastic, such a professional and so kind, I'll be posting a link to the interview and talking a little more about that when I post later next week so please keep an eye out. After that myself and Simon, Annie and Aidan all went to Sunderland and Darlington to grab lunch and just relax together for a while, nothing special just a chilled out relaxed day. 

Flowers Simon bought me <3

On Wednesday me and Simon got to head down to York after a doctors appointment and it was SO hectic trying to get everything together it was really mad! We ended up forgetting our inhalers, both myself and Simon are Asthmatic so it was a bad move there but I just prayed that nothing would happen, however that's not our luck really... Anywho, we stayed in a B&B called The Willows near York and just passed Harrogate and oh my it was so lovely! The proprietor was so kind and welcoming and totally understanding about my dietary needs, he was accommodating and an all-round great man, the room we stayed in was lovely, very private and comfortable with beautiful views to his fishing pond. 

On the first night we decided we would get tea somewhere and decided on a Chinese restaurant called Sweet Basil, the staff were lovely but (and here comes the usual unexpected medical problem) Simon ordered chicken chow mien which didn't include any information on what it contained just how much the dish would be so Simon thought he would be fine, he is severely allergic to nuts and somehow there must have been traces of nuts in the food as he swelled up like a balloon and couldn't breathe so we had to get him to York hospital really quickly, he was given a strong inhaler and steroids and was thankfully alright after a few hours. Still I was out of my mind panicking... no epipen no inhaler, no idea how to get to the hospital and my husband-to-be haven an allergic reaction in the passenger seat! God that was scary. 

Lunch and cocktails!

After the ordeal of the night before we decided would go into York and headed straight for The Shambles and The Shop That Must Not Be Named, a Harry Potter themed shop full of awesome stuff, I managed to get friends and family some gifts like notebooks, fudge, decorative lights, drink flasks and stuff so everyone was catered for thankfully. We headed into other shops and had a general look around which was lovely to be in an area other than Durham or Newcastle; we started to get hungry after a few hours of shopping, albeit it took me around 3 hours to walk round the shambles as I needed frequent breaks. Simon found a restaurant called divine which looked as though it had food that both of us could eat which i was grateful for considering I'm not sure Chinese was the best idea for the night before. We got pasta and risotto which was very nice and filling and Simon bought us a few cocktails to be going on with. It's important to note that earlier in the week I had been discussing the possibility of getting on to a Setmelanotide trial for a drug that aims to treat those with genetic obesity diseases, up until this point I had not been eligible and was waiting for more information via phone call that day from my main Doctor in Cambridge. So, obviously I was quite stressed and the few cocktails I had definitely helped, and they were yummy. 

Stunning Cathederal

Anyway I was meant to get the call from Dr Farooqi at 12:30 but she had been called into a meeting and I didn't receive it until 4pm, the same time we were due to be going to an escape room. I found out from my doctor that drug companies are refusing the trial for those with one genetic fault as it is deemed more helpful for those with 2 genetic defaults, however she did discuss with me the possibility of another "treatment" called Liraglutide, a regular injection into the fatty part of the stomach or thigh. Only issue is this drug causes Thyroid cancer in animals, pancreatic cancer, pancreatitis and a whole host of other problems in people... so now I'm panicking and hopping to get more information out of my RVI doctors as soon as possible, I want a treatment and my doctor says I need one as soon as possible but at what cost? Is getting an immediate treatment worth possibly risking my life? I have no idea but I'm scared and confused at the moment and will be writing another post about Liraglutide as soon as i know more info. 

After the call we ended up in Gr8 Escape York and it was amazing!!! We had lots of clues to figure out and had to escape to room to get our spy school diploma, unfortunately we are both bad at maths and the people monitoring us actually gave us the answers to a few clues haha! Still, we failed but honestly, it's the best experience ever!! I loved it as did Simon and can't wait to take out friends there! 

The next day was home time but we thought we would go into York city centre again and do a few things we never got to, we managed to get into a few shops which we never had the day before, Travelling Man where I bought a book called 'My Lesbian Experience with Loneliness" (awesome book by the way!), a Model shop so Simon could get some trains and things, and we went into the York dungeons which was hilarious, scary and utterly fascinating all in one! Overall it was a fab trip and we have made some wonderful memories,  got a lot of things to think about and will definitely be returning. 

Other than our trip to York I have become involved with the Sunderland University SU Buddies Scheme and and extremely excited about that, I go back the week of the 25th and my amazing best friend has been accepted into uni for her dream course which I'm so proud and excited for. I really can't wait for university to start but in the meantime I'mm be blogging more, reading up on course material, chilling and just doing me! 

I hope you all have had some amazing days this week as well! Thank you for reading and keep sharing ladies and gents! 

xo.