About TNF inhibitors for ankylosing spondylitis and rheumatoid arthritis from a pacient point of view
I am writing this article as a pacient using Enbrel for around 15 years.
I was diagnosed with Chronic Juvenile Arthritis around the age of 14 and after I turned 18 it was recorded as Rheumatoid Arthritis (the word Juvenile means that it appeared while I was a child). The joint pain appeared even from an earlier age, but my parents didn't know what was happening to me and it took them a while to realise that my incapacity of doing things was because of that. Sometimes I was limping, other times I had back, shoulders, elbows or knees pain, the pain moving from one join to another from time to time. This is how it was during the first years of my suffering.
Things changed after a few years. The pain moved to more sides of the body at the same time. I was already under investigations at a few rheumatic hospitals from my country, in different towns.
I have been told that I was one case out of 1000 and my illness started to progress from a very early age.
Many specialists, doctors, practitioners and medical students looked into my situation but nothing was clear about how it appeared and what was the cause. I have been told along the time a lot of things, that perhaps I was "stung by an insect" or "it is hereditary" but nothing was certain.
Before the age of 20, a doctor discovered that I have Ankylosing Spondylitis, an illness which has the same origin as Rheumatoid Arthritis, but it affected my lumbar back. In the hospital records my diagnosis was kept as Ankylosing Spondylitis. I have been told why but I don't remember exactly. Probably because both diseases can be treated with the same medicines (treated but not cured).
Years later a blood test confirmed that I had this inflammation in my body from the beginning. I basically suffered from this illness but it was not active until the pain appeared.
At around 23 years old, when I was in my third year at university, the pain reached the highest level. I was suffering from ankylosis on most parts of my body, not being able to lift my arms to feed myself if one hand was not pushing the other from the elbow, to be able to reach the mouth. I was not able to open my mouth more that 1 cm as my mandible was welded and blocked by the maxillary. The same things happen to my shoulders, not being able to lift my hands to touch the back of my head.
I was not able to sleep because of the back pain. The pain was in the lumbar area but also more to the top in a few more places. Lying on my back was almost impossible and you can compare the pain level with the pain created by a tooth nerve pain. When I couldn't lay on my back, I had to move from one side to another, but the shoulders were giving me the same level of pain. Still, changing the location of the pain was helping. I also had a limp in my leg for a long period of time. The pain generating the limp was starting from my lower back and it made me incapable to walk normally. I was very slow, more dragging the left leg behind me as the right one was alright.
I was in this situation for one looong year.
My limp walk added pressure to my right leg and I got varicose veins that got worse over time. After aprox ten years (a few years ago) I decided to have them removed by surgery. Two years later, my veins were looking normal, as the problem has not come back.
While I was going through the worst part of my life, still visiting hospitals regularly, a doctor from the hospital were I began my investigations decided to add me to a national scheme for a biological medicine that will give me back a normal live.
Before this has been decided, I was under tratament with Salazopyrin, Methotrexate and probably one more that I don't remember, but none of them had any effect on me.
During my worst painful moments I was prescribed a powerful injection with a steroid to kill my pain. I don't remember the exact name of this medicine but the thing is that I had it injected many times, in my leg muscles with a long needle. It was taking the pain away for a few days I think. The problem was that I was not allowed to do more than a number of injections during a certain period of time, but sometimes I was exceeding this number because it was making me feel good and it was easier for me to go to university, study and be able to focus on other things. I was at risk of having more injections than I was allowed. I knew that, but the pain without them was too strong. One evening, after having the injection at a very short time from the previous one, not respecting prescribed interval, I started to feel unusual. It was before going to sleep, and once I was in bed I was afraid that I might jump out of the window during sleep. My mind was going weird. My apartment was on the 3rd floor at the time and I felt that I was not in control of my feelings. It was the result of the last injection.
I was young and couldn't believe that my life will end so soon in such a painful way. I hoped and waited for my chance to be normal again and it came. I was going to make use of it to the maximum.
All this big pain was gone a few months later after being added to this national scheme for Enbrel.
My experience with Enbrel (Etanercept) and how the pain disappeared
I got my first injections with the new medicine Enbrel - 50ml (Etanercept as main substance) at the hospital under the doctor's supervision in case they were any bad reactions. Everything was fine and a few weeks later I was doing them myself without problems and I felt a lot better.
My recovery was happening fast and I was very much willing to feel better as fast as possible. If before I felt like I met my death, now I was not afraid of anything anymore. I felt the power in my body again as never before, I had courage to fight with my problem. I became a very positive person even if at some points in my life I lost hope many times. I got my flexibility back by doing gymnastics and once I felt stronger I started to lift dumbbells.
I always had the feeling that the exercises you can do at the gym represent the best and safest ways to recover from a physical problem. Why? Because the movements are well calculated, nothing is rushing you to do them faster. Because you can adapt the weight you lift and you have the flexibility of training every single muscle from your body. And one hand was able to help the other. In most of other sports there are a lot of risks that you can't avoid such as: if you like skiing, you can fall due to many reasons (speed, ice, loss of control); if you like cycling (speed, other vehicles, bad weather) and you are mostly training your leg muscles...you get the idea. Gym work is like nothing else.
I was a lot better only because a doctor didn't ignore my pain and included me in this national scheme. I felt many times that Medicine itself has a lot more things to discover and some medications can bring a lot of health risks.
What made me eligible for the national scheme with Enbrel
Unfortunately, getting into a nation scheme like I did was not something easy.
I was lucky.
There were many criteria for accessing such a medicine and I had a few advantages (from what I was told) compared with other patients from the waiting list.
The reasons I was accepted for treatment with Enbrel (Etanercept), from what I remember now, after so many years, are:
- I was young
- I was a student
- the other treatments I received before didn't work for me.
- I was not smoking
- I was not drinking alcohol
My origin is from Eastern Europe but I got work as a web developer in London in 2014. Once I moved to the United Kingdom, I knew I had another challenge to overcome. I had to find ways to transport my medicine from my country to the UK. This was a difficult decision because Enbrel (Etanercept) is something that has to be stored at a temperature between 2 and 8 degrees.
I found out later on that I was able to get Enbrel from the UK, which was under the name of Benepaly. I didn't want to risk giving up the medicine from where I was getting it because I felt that if i will ever return to my country in a few years time, I will not be able to get into the same scheme again very easily. This may be because my country has a lower budget for treatments like that compared to the UK and there might be more people affected by this illness now than before.
The risks of taking Enbrel (Etanercept) treatment
Since I started my medication with Enbrel (Etanercept), I had to go once every 6 months to repeat the required blood tests including the C-reactive protein, which was showing the level of inflammation in my body and reflected if I was responding well to the medication.
My liver and kidneys were also checked and proved to be without problems as this biological medicine can affect the autoimmune system and I am at high risk of getting certain infections. I am regularly tested for tuberculosis and hepatitis.
So far, after taking Enbrel (Etanercept) for so many years, I am fine. I never had complications. I always did my injections on time even if sometimes I was 1 or 2 days late, which I have been told that it is fine.
I know that there is a risk that Enbrel may stop working is if I do not inject on time and the previous injection to lose it's effect, but I remember that many years ago there was a problem with my medicine not being available at the pharmacy and my injection was delayed by more than 2 weeks but I was still fine.
Enbrel (Etanercept), treatment transportation
During this time I became an expert in transporting my medicine, Enbrel (Etanercept) in cold boxes. On coaches or on the plane, with temperature loggers testing the journey in warm weather initially, to check if the temperature will stay in the 2-8 degrees Celsius range for more than 1 day, the duration of a coach journey from my country to UK.
With a bit of research and many insulated boxes tested I managed to do it.
I remember that the most expensive box I got at the beginning was something from Germany, at around 120 Euros. It was made to keep the temperature I needed for 48 hours. And it did, but it was good only for coaches, when my mother was sending it as a parcel, because it was quite big. It has the volume of a small plane luggage (50/40/30 cm).
Therefore I had to get a different box for traveling by plane. A smaller one that can be used for maximum 8 hours. I got a small insulated bag from Decathlon (around 30 GB) powered by gel batteries and it worked very well. I also got a cold box (around 60 GB) with gel packs and it worked even better for 8-10 hours.
I always had a wired thermometer to show the inside temperature without opening the box. It was very important to not alter the inside temperature if it was getting too high. I was only opening the boxes when is was going below 2 degrees Celsius to allow some of the warm air to get inside, or the cold to go out then I was closing the lid back.
Enbrel (Etanercept) plane rules
I never had any problems with airport security while transporting my medicine. Aerial companies allow the transportation of medical treatments. I only had problems with the gel packs when I was travelling to my country with the empty box. Basically, having no treatment to carry, but having gel packs, is not allowed. My gel packs were once confiscated at the airport because they were used without transporting medicine. This is when I learned that next time I will add at least one injection into the box, or I will send the box by coach before my plane journey, and get the box from my parents when I arrive home, to be able to get my medicine back to the UK when I will return to work.
Enbrel (Etanercept) Maintenance
According to the policies of my country, I need to have blood tests every 6 months when a new 6 months supply of Enbrel medicine is approved for me. In order to be approved, the doctors and medical commission need to see how my body is responding to this treatment and if I got any infections or not. My immune system is affected because of this medicine.
An extra safety step is taken by checking for tuberculosis, hepatitis C or hepatitis B and in case any of these are positive, the treatment will be stopped.
This is quite scary for any patient and I hope I will never need to be in the situation of stopping to take Enbrel (Etanercept) and getting back to how I was.
I had to adapt my occupation
Because of my health problems I was never able to do physical work anywhere for more than it made me feel okay.
After I turned 18 my father encouraged me to be a truck driver like him and in a few months I got pretty much all the categories on my driving licence, excepting the D one, for busses. I always liked trucks because of my father and because I also drove a few I can say that the sensation is amazing! I like cars, trucks and driving in general therefore in my free time I write articles about things I meet on the streets or things that I share for drivers that want to learn from my experience, from what I think is best to do or act when you drive.
I am not talking from the experience of a truck driver because I am not. I changed my work activity a year after getting my University degree in accounting. I learned HTML, CSS, PHP and other languages and technology, things that helped me get job after job as a web developer. Now, I would never change my job after 10 years of experience in IT.