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:
- Upper respiratory tract infection
- Intestinal and digestive tract problems
- Back pain
- Flu-like symptoms
- Injection site reactions
- Loss of appetite
- Shortness of breath
- Weight gain
- Horse voice
- Lump in the throat
- Throat swelling
- Easy bruising or bleeding
- Increased thirst
- Less frequent urination
The final side effects as listed below are the most serious kind of effects resulting from the use of Liraglutide:
- Pancreatic cancer
- Thyroid cancer
- Kidney or liver problems resulting in the need for dialysis
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.